Leaker Roll Call

[Concerned Gal]

Hi,

Thought it might be a good idea to have an official roll call (brief summary of our situations) as a reference point. We have created such a community here but with memory issues being a leak symptom, I know I struggle to remember everyone's situation and thought this would assist. Let me know if you want me to edit this post to add other categories to the template. I strongly encourage everyone (especially lurkers!) to add their details.

Come back from time to time and update your details.



Age:
Gender:
Type of Leak:
First Sign of Leak:
First Diagnosed:
Brief Summary of Tests to date:
Brief Summary of Treatment to date:
Current Symptoms:
Current Status:
Other info:

[Concerned Gal]

Age: 25
Gender: Female
Type of Leak: Spinal - most likely cervical/thoracic (maybe T8)
First Sign of Leak: January 2006, pain at base of head, more intense with straining
First Diagnosed: May 2006
Brief Summary of Tests to date: CT Scan, MRI Scans, MRIs with contrast, CSF Flow Study, CT Myelogram
Brief Summary of Treatment to date: 2 x lumbar blood patch (May 06 and July 06), 1 x thoracic blood patch at T7-8 (Sep 06), Theophylline
Current Symptoms: neck stiffness, tightness across throat, hearing goes for a few mins once a day (like have ear muffs on and low thud,thud,thud noise), pain with eye movements (couple of times a day), occasional pain in middle upper back
Current Status: Thankful to have been upright all day since October 2006, working full-time

[Edward]

Age: 45
Gender: Male
Type of Leak: Cranial (suspected)
First Sign of Leak: October, 2006
First Diagnosed: (not diagnosed yet)
Brief Summary of Tests to date: MRI, CT Scans, Cisternogram Soon
Brief Summary of Treatment to date: Nothing Special (just avoiding strenuous activities).
Current Symptoms: My apparent leak is into my ears following skull fractures sustained in October, 2006. Symptoms include ear fullness, stuffiness, wetness, itchiness, sound of fluid in my ears, and dripping down the back of my throat, occassional dripping from my nose.
Current Status: I believe I have multiple small cranial leaks that partially healed at first but seem to have stopped improving now. I am scheduled for a cisternogram fairly soon and will update my story after that is complete. I am very concerned that because my leaks are apparently small that they will be difficult to find.
Other Info.: I have also had some type of undiagnosed autoimmune disorder for several years. It resembles some type of connective tissue disease like lupus. I suffer from heart irregularities, raynaud's, and several other problems.

[Tamaretta]

Filling in for my daughter, Taylor

AGE: 16
GENDER: female
Type of Leak: spinal (C-3 to L-5)
First sign of leak: Aug 2003 - two days following an intestinal resectioning involving mega toxic colon (5+ lbs of mass removed) developed retching and head pain upon sitting
First diagnosed: Found 1 spinal tear/leak on anterior wall of dura (pool of fluid covered three vertebrae) in Dec 2003, then in Jan/Feb 2004 MRI looked fine so she was "healed"--actual diagnosis of multiple, spontaneous CSF leaks Aug 2005
Brief summary of tests to date: CT Scan, MRI Scans, MRIs with contrast, CSF Flow Study, CT Myelogram, Cisternogram, Genetic Testing for Marfans and Ehler-Danlos (both negative)
Brief summary of treatments: IV caffeine, salt tablets, abdominal binder, numerous (10+) blood patches at both the thoracic and lumbar regions, infusion of Elliot B solution, extraventricular drain (to manipulate intracranial pressure), intrathecal device to infuse saline and/or pain meds, pain and nausea management, many tries at medicinally increasing ICP (Entocort, Inderal, etc.), steroids

Current symptoms: Unrelenting head pain and nausea; "Pops" inside her head leads to retching/vomiting; peripheral neuropathy (mainly in feet) due to "open" and inflamed nerve roots in the lower lumbar region
Current Status Living her life staring at the ceiling (completely flat)
Other info:Taylor also suffers from an undefined connection tissue disorder and a type of colitis called collagenous colitis (which is an auto-immune disease). She also tested positive for Lyme disease and was treated for 3 mos on IV Rocephin. Starting to see a pattern here???

[LauraL840]

Filling this out for my husband

Age: 49
Gender: male
Type of Leak: Lumbar
First Sign of Leak: September 3, 2006
First Diagnosed: April 2007
Brief Summary of Tests to date:CT, MRI with contrast, Lumbar puncture (2 or 3 dry taps before wet tap opening pressure of 15 mm water)
Brief Summary of Treatment to date: OTC meds (tylenol, ibuprofen, aleve) RX pain management meds (Percoset, Tramadol, Indomethacin, Lyrica) RX 'headache preventative' (Imipramine), EBP #1 (9/22/06), EPB #2 4/07, EPB #3 5/15/07
Current Symptoms: Constant headache described as a burning feeling, like there are gas logs burning inside head. Sometimes it's 'low' and sometimes it's like someone cranks it up on high, orthostatic in nature, although not 100% of time and the pain doesn't ever go away.
Current Status: tired, in pain from EBP #3, low ... feels useless :-(
Other Info: This is his 2nd leak episode with a 3 year leak-free period. First leak was in July 2003 following an LP for viral meningitis (which he had). We didn't know he had a leak, didn't know anything about PDPH (post dural puncture headache), so we never sought treatment and thought that his healing time was just prolonged due to severity of meningitis/encephalitis. It took 4+/- months for headache to resolve (dura to seal). In September of 2006 he experienced the same meningitis headache (it's one of a kind) with both fever and stiff neck so we're back in ER for LP. This LP was different. He says it felt like it popped when the needle went in. Turns out he had meningitis again, this time bacterial from Rocky Mountain Spotted Fever. Initial thought 3 weeks post LP was PDPH so he had EBP #1 and no one followed up, so we assumed that since it brought no lasting relief that he didn't have a leak and was going to take forever to heal just like last time....

[ErinSF]

Age: 28
Gender: Female
Type of Leak: Toracic/Cervical who knows??
First Sign of Leak: November 2004
First Diagnosed: February 2005
Brief Summary of Tests to date: Multiple MRI with and without contrast, CT, Myelogram
Brief Summary of Treatment to date: I was training to become a Pilates instructor when ot of the blue the headaches began. When I would sit up my head would throb behind my eyes feeling like my brain was about to explode, when I would lie down it would stop. it took about 2 months to actually diagnose, after which I have had about 5 or so blood patches 4 lumbar 1 thoracic
Current Symptoms: Lumbar EBP alleviated my symptoms for a week os so and then the headaches were back. Most recently (Jan 07) I had the CT Myelogram and the Thoracic EBP which has lasted the longest but I am not fully recovered.
Current Status: So frusterated :mad: :confused: it seems no one can understand what this is like unless they experience it. The dr.'s know there is a tear but they can't locate it I really believe it is in the top of my neck because I have had pain there since I was diagnosed.

[cookie_dr]

Age: 47
Gender: female
Type of Leak: no idea
First Sign of Leak: pain between shoulder blades, later the headaches,
arms, etc.
First Diagnosed: April, 2007
Brief Summary of Tests to date: MRI & 2 spinal taps
Brief Summary of Treatment to date: meds for headaches
Current Symptoms: dull headaches and some back pain, my neck hurts when I cough
Current Status: feeling much better
Other info: trying to decide now whether to let doctor run dye to locate leak or leave well enough alone......this web site has helped me soooooo much.....thank you all!!!!!!!!

[jimc]

Age: 44
Gender: Male
Type of Leak: It appears to be spinal now; I had a definite cranial leak for many months.
First Sign of Leak: Nasal discharge
First Diagnosed: Nov 2005
Brief Summary of Tests to date: CT myelogram
Brief Summary of Treatment to date: Diamox, Lumbar drain, craniotomy to patch cranial leak, LP shunt inserted, LP shunt widened, 2nd craniotomy to patch cranial leak, LP shunt removed.
Current Symptoms: Orthostatic headache, poor hearing on left, fuzzy vision on left, sensitivity to loud/percussive sounds.
Current Status: On my way to see Dr. Schievink
Other info: 1/3 of my days are spent completely horizontal due to head pain, 1/3 of my days I can be upright for an hour or so at a time for a total of 3-4 hours, 1/3 of my days I can upright for several hours at a time.

[guineapig]

Age: 33 when spinal trauma and diagnosis

Gender: male

Type of Leak: traumatic spinal

First Sign of Leak: firecracker headaches, tinnitus, blurry vision

First Diagnosed: 9/05

Brief Summary Tests and Diagnosis: useless, false-negative mri myelogram w/out contrast; diagnosed by LP zero pressure and complete spinal ct-myelogram positive 4 leaks left side lumbar; after 3 ebps an LP 7.x pressure, complete spinal ct-myelogram positive only for LP contrast trail, still symptomatic; 24 + hours spinal catheterization showing low pressure over time

Brief Summary of Treatment to date: single ebp to lumbar, w/in 2 weeks double patch to thoracic and lumbar, 2 ½ months another double patch, 4 months another double patch, 4 months another double patch, 7 months single small patch to spinal catheter hole. each patch was followed by 2 days bed rest except 5th patch which didn’t work as well as others.

Symptoms: constant headache intensity varies; anxiety; inability to handle stress; slightly blurry vision; constant varying tinnitus, varying ear pain, occasional popping sound in either ear, hypersensitivity to high pitched, isolated noises; occasional neuropathies: tingling feet/lower legs; emotional and physical weariness.

Other Symptoms: facial pain, facial numbness which didn’t appear for almost 2 years first symptom, eyes pain, slight diplopia

Current Status: improvement since diagnosis and ebp treatments, continuous pain though.

Physicians: myself; wouter schievink neurosurgeon for diagnosis and treatment recommendations at cedars-sinai; charles louy anesthesiologist for epidural blood patches at cedars-sinai; many other useless ones very good at cashing checks.

Dealing With Pain: oxycodone upto 10mg as needed; ice packs on head upto 10 a day; walking streets all hours of night; a good wack on top the head; anything that distracts: tv, radio, cds, conversation..

Disabilities Benefits: with no difficulty got california state disability for months; 1 year fighting ss: initial app rejected, now waiting 6 months to even have the case assigned a date before a ss judge, just retained ss lawyer...

Comments: headache has never been strictly orthostatic; often felt worse after laying down even after 1 or 2 hours down (this even prior to any treatment); is orthostatic in nature when consider 24 hours, laying down a long time. what was God thinking?

[Concerned Gal]

Just bumping this up, so that the newbies have a bit of background on each of us.

[lostermiller]

Age: 48
Gender: female
Type of Leak:spontaneous CSF leak
First Sign of Leak: severe headache only relieved by lying down
First Diagnosed:4/26/07
Brief Summary of Tests to date: lumbar puncture to determine CSF pressure, CT scan, MRI's (entire spine now), CT myelograms, venous studies, blood work,
Brief Summary of Treatment to date: 3 lumbar blood patches (failed), one directed blood patch at T8 (successful) done in June.
Current Symptoms: no headache unless I bend over and it doesn't last.
Current Status: I consider myself "cured".
Other info: I am willing to share any information I have.

[new patient]

Age: 38
Gender: Female
Type of Leak: spontaneous
First Sign of Leak: 6/20/07
First Diagnosed: 7/3/07
Brief Summary of Tests to date: two CT scans on 6/22, LP on 6/22; two MRIs (with contrast) one venous
Brief Summary of Treatment to date: EBP to lumbar region on 7/19, no success
Current Symptoms: still having severe postural pain to head and back of neck, one day post EBP
Current Status: hopeful that it will resolve itself without further treatment and with complete bedrest.
Other info: Seeking experienced doctor in the northeast

[leidalsn]

Age: 44

Gender: female

Geographical Location: PA

Type of Leak: spontaneous + spinal tap induced

First Sign of Leak: 6/7/07 terrible headache, relieved when horizontal

First Diagnosed: 6/10/07 by ER doc upon SLOW spinal tap

Brief Summary Tests and Diagnosis: spinal tap (no pressure reading taken), MRI, CT scan head & spine (normal), radioisotope cisternagram with pledgets in sinuses (showed suspect leak in lumbar - site of my spinal tap - no sign of leak anywhere else).

Brief Summary of Treatment to date: single ebp to lumbar on 7/12. Felt different but pretty bad for 7 days afterwards.

Symptoms: mostly headache, head fullness, lack of visual focus on standing, feeling of liquid in rt. ear just before headaches, fullness in rt. sinus and ear, neck stiffness particularly on rt. side, lower back pain. Headache gets worse in late afternoon/evening.

Other Symptoms: pain sometimes temporarily relieved if I squeeze above the bridge of my nose, pain exacerbated if I press on the right side of my neck when it is hurting.

Current Status: going on 2nd consecutive fairly good day (now 9 days post EBP). Hoping it continues to improve.

Physicians: Neurologist: Dr. Seth Haplea - (great guy & physician) who is first to admit not much experience with spontaeous CSF leaks.

Dealing With Pain: I try to listen to my body and find a position that minimizes pain. Caffeine, lots of water, trying to not overdo it. Try to minimize position changes so CSF pressure doesn't have to keep trying to adjust.

Work Status: Trying to work a few hours/day a few days/week but the commute aggravates my headaches. Filing for short term disability.

Comments: Trying a Manganese supplement (Ligoplex II) that is supposed to help strengthen connective tissues - according to my "natural" pharmacist. Trying to improve my diet by eating healthy.

[CSFChallenged]

Age: 43
Gender: Female
Type of Leak: Spontaneous, spinal suspected 12 sites, thoracic,and lumbar

First Sign of Leak: April 2002, Hearing loss, tinnitis after prolonged sinus infection. Progressed to dull orthostatic HA at back of head which completely resolved when lying down and severe cranial nerve palsies

First Diagnosed: May 21, 2002

Brief Summary of Tests to date: CT scan, MRIs,10+ all but one enhanced, MRVs (developed sinus venous thrombosis and resolved), CT myelogramX3 w/12 dilated nerve roots,leaks, per Mokri. CisternogramX3- Leak midthoracic, LPs-dry,dry, low,low, dry, BL low. Cerebral angiogram MRI/MRV pending this week
Brief Summary of Treatment to date: IV caffeine, bedrest, steroids, 5 EBP's(1st two worked X a day, few hours, 3rd nothing, worse after 4 &5) 1 saline patch, theophylline, Vitamin A, IV hydration.

Current Symptoms: Constant severe 24/7 HA and pressure at back of head, engulfs head when upright >15-20 minutes, w/nausea, vomiting, hearing loss. Cranial nerve palsies worsen with up time, fullness in ears like underwater, severe swallowing probs, facial numbness, hoarseness, dizziness, ataxia pain /weakness in arms and hands(new). Valsalva, bending, lifting >5# BAD!

Current Status: Disabled (SSD)on bedrest since May 2002, up 30 min. to 2and 1/2 hrs. at a time.(thanks to pain meds). Down 4-6 hrs to recoup, sometimes 4-6 days if over do it. Use wheelchair to go out unless short trip. Leave house 1-2X perweek.

Geographical Data: Midwest, Ohio

Oddities experienced which may or may not be leak related: Chiari, not sure which came 1st...??? leak or chiari

Other ?: Took Quinolone Antibiotic for 2 mo. before diagnosed. Quinolones have history of irreversible Connective tissue damage in dogs and spontaneous Achilles tendon rupture in humans, Ct damage exacerbated by concommittant steroid use and Vit. A deficiency...Hmmm?

[okleaker]

Age: 33

Gender: female

Geographical Location: OK

Type of Leak: spontaneous

First Sign of Leak: 7/06 experienced head pain of short duration after bending over

First Diagnosed: 7/12/07

Brief Summary Tests and Diagnosis: First went to primary care doc and was treated for sinus headache. After no relief he sent me for MRI. He then referred me to a neurologist. She sent me for MRA, EEG and carotid mapping. Found no problems so she decided it was a form of migraine and tried various drugs. Developed angle closure glaucoma in both eyes from drug Topamax. Had laser eye surgery to relieve pressure. She then sent me for a CT scan still found nothing wrong. After trying several other drugs I called my primary care doc for a new referral. Went to 2nd neurologist and within 5 minutes he said I think you have a slow csf leak. Went to hospital for nuclear cysternogram in June of 07. Dye went subdural so I had to do it all over again in July of 07. Finally received definite diagnosis of CSF leak at base of skull with no known cause. Now awaiting yet another MRI with high field magnet to determine how to repair leak.

Brief Summary of Treatment to date: No treatment for leak as of yet. Had meningitis vaccine in July of 07.

Symptoms: head pain after I bend over and raise back up. Pain is throbbing and lasts less than one minute. If I bend over a lot in a day pain increases and I have to lie down to relieve it. Occasional nasal drip.

Other Symptoms: when I look down and back up I have lots of floaters in my vision. Not sure if that is csf leak related or glaucoma related.

Current Status: Awaiting yet another MRI and then consultation with neurosurgeon.

Dealing With Pain: Try not to bend over much.

Work Status: Still working.

[rimo240]

Age: 47
Gender: male
Type of Leak: spontaneous cranial
First Sign of Leak: August 2003
First Diagnosed: September 2003
Brief Summary of Tests to date: multiple CT scans, Multiple MRIs with & w/o contrast, cisternograms with nasal stints, and so many lumbar punctures that I no longer require to be numbed prior to the procedure.
Brief Summary of Treatment to date: multiple trans-sphenoidal procedures, on three occasions lumbar drains to relieve inter-cranial pressure (a catheter is inserted into the spinal cord threaded about 14 inches till it rest between the shoulder blades and the excess CSF is drained at a rate of 10 cc's every 6 hrs).
Current Symptoms: wake up every morning with a headache (a 6 on the 10 scale) and hope it doesn't become a 9, occasional double vision, ataxia, numbness in left leg and arm. Exertion exacerbates these symptoms and increase discharge from right nostril.
Current Status: unhappy that others have to experience this thing but at the same time happy to have found others who understand. The old walk in my shoes thing.

[LauraL840]

I'm going to try to update this (blue) within a quote from my original post ... hope it works!

Filling this out for my husband

Age: 49
Gender: male
Type of Leak: Lumbar
First Sign of Leak: September 3, 2006
First Diagnosed: April 2007
Brief Summary of Tests to date:CT, MRI with contrast, Lumbar puncture (2 or 3 dry taps before wet tap opening pressure of 15 mm water) Repeat MRI of brain w&w/o contrast, MRI of lumbar spine w&w/o cont, CT Maxillofacial w&w/o contrast, Radionuclide Cisternogram, CT Cervical and Lumbar Spine Post Myelogram
Brief Summary of Treatment to date: OTC meds (tylenol, ibuprofen, aleve) RX pain management meds (Percoset, Tramadol, Indomethacin, Lyrica,Oxycodone, Ativan, Amitriptyline, Haldol, Toradol) RX 'headache preventative' (Imipramine,Carbamazepine), Hospitalized for 8 days to run a course of DHE-45 (dihydroergotamine) to 'break' the pain (didn't do shquat), and a trial of Solu-Medrol (IV steroids)EBP #1 (9/22/06), EPB #2 4/07, EPB #3 5/15/07 (<----hit the dura), EBP #4 6/29/07 30 seconds after injection, headache is completely gone :D .... lasted only 4 days :mad:
Current Symptoms: Constant headache described as a burning feeling, like there are gas logs burning inside head. Sometimes it's 'low' and sometimes it's like someone cranks it up on high, orthostatic in nature, although not 100% of time and the pain doesn't ever go away.
Current Status: tired, in pain from EBP #3, low ... feels useless :( updated status ... still has headache, no real resolution or improvement after the 4th patch slipped. Trying to educate and convince anesthesiologist to try fibrin/blood patch or just fibrin. Have been 'feeding' them info via email and waiting their response.
Other Info: This is his 2nd leak episode with a 3 year leak-free period. First leak was in July 2003 following an LP for viral meningitis (which he had). We didn't know he had a leak, didn't know anything about PDPH (post dural puncture headache), so we never sought treatment and thought that his healing time was just prolonged due to severity of meningitis/encephalitis. It took 4+/- months for headache to resolve (dura to seal). In September of 2006 he experienced the same meningitis headache (it's one of a kind) with both fever and stiff neck so we're back in ER for LP. This LP was different. He says it felt like it popped when the needle went in. Turns out he had meningitis again, this time bacterial from Rocky Mountain Spotted Fever. Initial thought 3 weeks post LP was PDPH so he had EBP #1 and no one followed up, so we assumed that since it brought no lasting relief that he didn't have a leak and was going to take forever to heal just like last time....

[sphenoidleaker]

Age: 41

Gender: Female

Type of Leak: cranial - two leaks detected during transsphenoidal surgery. Third leak showed about two weeks after 2nd surgery.

First Sign of Leak: leak detected during each surgery June 06 and Oct. 06. Third leak showed up about two weeks after 2nd surgery.

First Diagnosed: June 06

Brief Summary of Tests to date: Seems that leak has returned after removal of LP shunt that was put in in Oct. 06

Brief Summary of Treatment to date: After both transsphenoidal surgeries a fat graph was placed and an open lumbar drain for 4 days. In Oct. 06 an LP shunt was put in to try and give the tear a chance to heal.

Current Symptoms: Headaches that get worse the longer I'm up. Laying down in my trusty recliner gives relief. Bending over is torture - I don't do it because it feels like my head is going to explode. Popping and fullness in ears but mostly R ear. Stiff neck. Intermittent dripping from nose. Feeling of fluid "rolling" around in my sinus cavity behind my nose.

Current Status: Going to see new ENT 8/28

Other info: Transsphenoidal surgeries were performed to remove a tumor from the pituitary that was causing cushings disease.

[jmilphoto]

Age: 26

Gender: female

Type of Leak: spontaneous (location unknown)

First Sign of Leak: late 2003 (intermittant headaches) becoming progressively worse over time. I now have headaches daily getting relief only when laying completely flat.

First Diagnosed: 2006 - intracranial hypotension (MRI enhancement)

Brief Summary of Tests to date: 2 Brain MRIs (both w&w/o contrast), spine MRI, radionucleotide cisternogram, and way too many spinal taps (almost all dry).

Brief Summary of Treatment to date: Handfulls of OTC (tylenol, ibuprophen, aleve...), indomethicin (very BAD), toradal oral and injections, neck & back massage, heating pads, ice packs, migradone, imitrex, zonagram, pamalor, prozac, cymbalta..NONE WORKED...Except prednisone (steroids) which works great but they won't give to me anymore because its bad for you..go figure - jerks! (oh, and I gained almost 10 lbs in water in 3 wks. - but it was Sooo worth it!!!)

Also, 3 EBPs. 1st one (July '06) worked for 3-4 mons, headaches slowly returned over the next 3 mons. - injected 7-10 ml of blood - was on steroids during the patch which may be why I didn't experience any adverse side effects following.

2nd EBP (Apr. '07) - 20 ml injected - had headache when laying down turned into a trip to the ER with nasea, chills, uncontrollable vomiting (thought I had meningitis!) and another spinal tap.

3rd EBP (Aug. '07) - 9 ml used - had slight headache while laying down, almost no headache on 3rd day, then headaches returned to normal on 4th day.

Current Symptoms: Daily positional headaches (dull burning sensation), started having neck pain 2 yrs ago when the headaches became a dailly issue.

Current Status: Tempted to jump off a bridge, but hopefull I won't have to.

Other info: This site ROCKS!!! :D

[Leaker2]

Age: 51

Gender: Female

Type of Leak: Spinal

First Sign of Leak: April 2002

First Diagnosed: November 2005

Brief Summary of Tests to date: Multiple MRIs. MRA. Cisternogram. 2 CT myelograms. 2 spinal taps.

Brief Summary of Treatment to date: Numerous migraine meds. 4 unsuccessful blood patches. Acupuncture (that doesn't seem to be working). Massage that gives temporary relief. Best combo of meds for me is Toradol and one Excedrine Tension taken together.

Current Symptoms: Almost daily pain, ranging from dull to bad. Occasionally severe. Constant ear popping. Pulsatile tinnitus. Pain with bending over, coughing and valsalva. Every now and then will string a few pain-free days together.

Current Status: Able to work full-time, but have pain at least part of the day on most days. Sometimes headache is 24-7. Currently considering a trip to Dr. Schievink.

Other info: Was born with aortic stenosis (narrowing of the aortic valve). Had valve repaired when 14 and replaced at 42. With the discovery in 2006 of an aortic aneurysm and 40 perineural cysts along my spine, it was determined that my heart problems and the spinal leak are all due to a connective tissue disorder that bears some similarity to Marfan's, but isn't Marfan's. Currently, the aneurysm is being followed and I take beta blockers to slow its growth. Also have a borderline bleeding disorder, probably also caused by the connective tissue disorder.

[Tamaretta]

So sorry to see all the new members, thought the roll call might help.

[Helga]

Age:42
Gender:female
Type of Leak:spinal, T10/11, possibly multi-level
First Sign of Leak:"strange" headache, weakness, when skiing in march 07
First Diagnosed:march 07
Brief Summary of Tests to date:lp, ct, mri, radio-cisternography, myelographies
Brief Summary of Treatment to date:one directed blood- patch and lumbar drain in april 07,
two high-volume blood-patches in july and august this year
Current Symptoms:weakness, pressure in my head, headaches, nausea when being in an upright position too long or walking too much
Current Status:better but not really good
Other info:thinking of more treatment (another patch or fibrin glue)

Helga__________________

[eirama]

Age: 55 now, diagnosed at 52
Gender: F
Type of Leak: Ethmoid Sinus - Spontaneous -Defect in Cribriform plate
First Sign of Leak: Chronic cough, rhinorrhea & bad taste
First Diagnosed: Fall 2004
Brief Summary of Tests to date: MRI, Beta 2 Transferrin of fluid & Cisternogram
Brief Summary of Treatment to date: Trans nasal repair of leak, VP Shunt
Current Symptoms: occasional leak, get tired easly
Current Status: Work full time, doing well
Other info::)

[drippi]

Age: 37

Gender: F

Type of Leak: Spontaneous Cranial into maxillary sinus

First Sign of Leak: nasal csf drip

First Diagnosed: march 1996

Brief Summary of Tests to date: 1996 1 mri, 3 ct cisternograms, 1 camera through my gums into my sinuses. 2007 1 ct cisternogram, 1mri. -never found the leak through any xrays.

Brief Summary of Treatment to date: craniotomy 1996, lifted up brain and took some fascia from my thigh and made a makeshift patch which didn't work.

Current Symptoms: no headaches amazingly. extreme pressure behind nose and eyes. full ear feeling. extreme anxiety. eye focus issues. very weird stuff i can't even explain in a professional way. i lived 10 years with only a small leak as a symptom, past year and a half it's progressed to something a b it more sinister and scary.

Current Status: going for another ct cisternogram this coming week, not very hopeful that they will find the leak. at wits end and can't take the stress anymore.

Other info: when i first got on the internet 8 years ago i could not find ANYTHING about csf leaks! it's so wonderful to actually see a forum with people who have leaks as well. (not wonderful to see that you actually have it don't get me wrong!)

[LauraL840]

With so many recent posts from new posters I thought it would be helpful to bump this up and encourage all you guys to either ADD your information and/or update!

Also, if you're OK with adding your location, that might help some folks in finding doctors!

I'm going to add DH's latest update in this (blue) from my original post ... hope it makes sense!

Filling this out for my husband

Age: 49

Gender: male

Location: NC

Treating Facility: University of North Carolina Medical Center, Chapel Hill - Neurology and Spine / Pain Management Clinic

Type of Leak: Lumbar

First Sign of Leak: September 3, 2006

First Diagnosed: April 2007

Brief Summary of Tests to date:
CT,
MRI with contrast,
Lumbar puncture (2 or 3 dry taps before wet tap opening pressure of 15 mm water)
Repeat MRI of brain w&w/o contrast,
MRI of lumbar spine w&w/o contrast,
CT Maxillofacial w&w/o contrast (landmark sinus CT),
Radionuclide Cisternogram (head) and Scintogram (spine),
CT Cervical and Lumbar Spine Post Myelogram

Brief Summary of Treatment to date:
OTC meds (tylenol, ibuprofen, aleve)
RX pain meds (Percoset, Tramadol, Indomethacin, Lyrica, Oxycodone, Ativan, Amitriptyline, Haldol, Toradol)
RX 'headache preventative' (Imipramine,Carbamazepine),
Hospitalized for 8 days to run a course of DHE-45 (dihydroergotamine) to 'break' the pain (didn't do shquat),
and a trial of Solu-Medrol (IV steroids)
EBP #1 9/22/06, no real lasting improvement
EPB #2 4/07, some improvement
EBP #3 5/15/07, total disaster symptoms worsen
EBP #4 6/29/07, 30 sec after, headache is completely gone ... lasted only 4 days :(
Epidural FIBRIN (tiseel) Glue Patch #1 9/14/2007, 4 mL's injected at L2-3 ... reduced HA pain initially but no lasting relief ... Leak site is at L4-5 but doctor didn't want to 'go' there as that's where EBP #3 was done and IT was a disaster!
Epidural FIBRIN Patch #2 11/9/07, 4 mL's injected at L4-5 (FINALLY) with considerable difficulty! :( However he's had the greatest and longest lasting improvement since 9/2006

Current Symptoms: Intermittent headache with orthostatic features when standing or upright; he finally gets some relief when laying down. However, when he's laying down he gets a different headache (at base of skull) with accompanying neck ache / should pain / tension. It's been 11 days since the patch and he's still having a great deal of lower back pain.

Current Status: So very hopeful that this last patch will provide continuing healing and relief! Not 100% convinced that it's going to 'work', but it's provided the most significant positive results so far!

Other Info: This is his 2nd leak episode with a 3 year leak-free period. First leak was in July 2003 following an LP for viral meningitis (which he had). We didn't know he had a leak, didn't know anything about PDPH (post dural puncture headache), so we never sought treatment and thought that his healing time was just prolonged due to severity of meningitis/encephalitis. It took 4+/- months for headache to resolve (dura to seal). In September of 2006 he experienced the same meningitis headache (it's one of a kind) with both fever and stiff neck so we're back in ER for LP. This LP was different. He says it felt like it popped when the needle went in. Turns out he had meningitis again, this time bacterial from Rocky Mountain Spotted Fever. Initial thought 3 weeks post LP was PDPH so he had EBP #1 and no one followed up, so we assumed that since it brought no lasting relief that he didn't have a leak and was going to take forever to heal just like last time....

[Achilles1]

[B][B]Age:46
Gender:M
Type of Leak:CSF
First Sign of Leak:April 06
First Diagnosed:July 06
Brief Summary of Tests to date:CT's, MRI's with and w/o contrast, myelogram, cisternogram, blood patch, angiogram, spinal tap
Brief Summary of Treatment to date: bi-lateral subdural hematomas led to surgery in July 06.
Current Symptoms:headaches daily shifts with position, extreme fatigue, pain in middle of back
Current Status:MRI Friday
Other info:I find it very discouraging that some on this board have had similar situations for years and years. I just want the pain to go away and feel useful again.

[a real drip]

Age: 44

Gender: F

Type of Leak: I believe it's spontaneous cranial; hope to find out for sure soon

First Sign of Leak: April 2007. I had had a headache for a couple of weeks (4 on a 10-scale). I was on my way home from work; stopped at a Walgreens. All of a sudden this clear nasal discharge began dripping from my right nostril. Went to see primary care physician (PCP) after a week or two of drippy headachey symptoms; she didn't do much. I wound up in the hospital with pneumonia shortly thereafter. Symptoms went away with pneumonia until Sept. 2007. I now have a new PCP.

First Diagnosed: I hope to have a diagnosis by next Wednesday.

Brief Summary of Tests to date: Fancy 3-D CT scan at ENT's office, who diagnosed me with sphenoid sinus infection--was put on 3rd round of antibiotics, steroids, and Nasonex. Guess what? Didn't help. Had an MRI w/ contrast Monday; report didn't show anything out of ordinary, but my wonderful doctor then consulted with a neuro colleague who suggested I get a CT cisternogram, which is scheduled for Monday morning. I see my endocrinologist tomorrow morning (I have a small pituitary tumor).

Brief Summary of Treatment to date: Nothing specific to nondiagnosed CSF leak yet. Was told that depending on diagnostic Monday, I may next be scheduled for transphenoidal surgery to repair leak.

Current Symptoms: 24/7 drip from right nostril, persistent headache (4-6 on 10-point scale), and I'm tired all the time. I have my own business and this week I have not been very productive. Haven't set up a single appointment. Taking my dog for a walk 3x day feels like a huge chore.

Current Status: I pray for speedy diagnosis and successful treatment--and relief from my symptoms.

Other info: Just grateful that this message board is here and that you are so forthcoming with what you know and have experienced.

[Tamaretta]

Bumping this thread again - anolan, juleni, Tru3 L3gend - wanna add your info?

[PatM]

Age: 37

Gender: Male

Location: Manchester, England

Treating Facility: Salford Royal (Hope Hospital)

Type of Leak: Head (I guess?)

First Sign of Leak: March 2002 after a head trauma. I didn't leak
until after I left hospital and my GP put it
down as a damaged tear duct.

First Diagnosed: June 2007

Brief Summary of Tests to date:
CT scan
MR scan

Brief Summary of Treatment to date:
Nothing.

Current Symptoms: None, I'm happy to say. I did leak for five years but it stopped without treatment a few months ago. Would you believe I stopped leaking about a week before I saw the consultant (he didn't, it never happens apparently). I never suffered neck/back pain or headaches which is probably why I was not diagnosed for 5 years (I never had reason to complain). Testing has shown I have a bony defect with a width of about 8mm in the posterior part of my anterior cranial fossa. This has recently been 'plugged' by an encephalocele prolapsing into the defect, this has stopped the drip. In less technical terms my brain has fallen into the hole.

Current Status: The doctors want to repair the hole due too concerns of contracting meningitis. The technical terms being used are endoscopically via a transnasal and transpenoidal route (up my nose I guess). Is this the blood patch being talked about or am I different?

Other Info: I have had one episode of neck pain and it coincided with my leak stopping. As this was before my drip was diagnosed and it was put down to a conventional bad back. With hindsight it is possible that I caught mild meningitis and this caused the prolapse that stopped the leak.

[cacoelho]

Age:36
Gender:F
Type of Leak:Spontaneous, don't know where
First Sign of Leak:stood up one morning and just about passed out from the pain lied down and felt fine again. Was so befuddled that I did it a few times just to make sure I wasn't imagening it haha (11-08-07)
First Diagnosed:(11-26-07)
Brief Summary of Tests to date:CT scan + MRI of my head. Confirmed IH but couldn't find leak
Brief Summary of Treatment to date: 2 bloodpatches.
Current Symptoms: head ache 24/7 even when lying down
Current Status: it's been 5 days since my second patch and I'm still hopeful that it worked and don't know if "all the time" head ache is a good or a bad thing.
Other info:

[Tamaretta]

Bumping to the top (AGAIN)

[vli1972]

Age: 35
Gender: Female
Geographic Region: Southeast AZ
Clinic/Doctor: Neurologist Dr. Goodman at the Mayo Clinic in Scottsdale, AZ . . . The Mayo Clinic and Dr. Goodman ROCK!!!!
Type of Leak: spontaneous CSF leak (location unknown - never found)
Location of Leak: unknown - never found it - best guess . . . neck??
1st Sign of Leak: ??? headaches began back in early July 2007???
1st Diagnosed: September 5, 2007!!!!
Reason for Leak: Unknown - best guess . . . weight lifting???
Summary of Tests: CT of head (July 2007), 4 MRIs of lumbar, thoracic, neck and head (September 7, 2007), follow up MRIs of neck and head (November 2, 2007).
Summary of Treatment prior to diagnosis: Treated for Sinusitis, then Severe Sinusitis, then Tension Headaches, then anxiety, then TMJ, then depression . . . I didn't agree with their diagnosis, so started looking up symptoms online more where we started getting closer by finding information about "orthostatic intolerance" . . . then I finally got someone to listen 2 1/2 hours away at the Mayo Clinic in Scottsdale, AZ when my husband made an appt. for me there . . . thank GOD!
Summary of Medications prior to diagnosis: Too many to mention . . . but it ranged anywhere from Amoxicillin to Nasacort to Tylenol with Codeine to Butalbital to 600mg tablets of Ibuprofen to Xanax to Steroids to Excedrin Migraine and the list goes on . . . didn't take much of any of them because I found myself shaking with every new medicine I tried.
Summary of Treatment post-diagnosis: BP (September 7, 2007), 2nd BP (September 13, 2007).
Summary of Medication post-diagnosis: 2 Extra Strength Quick Release Gel Tabs of Tylenol (sometimes it works, sometimes it doesn't)
Symptoms prior to Treatment: Shooting pain upon sitting up or standing (didn't matter if it was slow or quick), only got relief from laying down (if you talked to me laying down-you'd never know anything was wrong), feeling of fullness in ears (could hear my heart beat, etc.), Tinnitis (ringing in ears), nauseousness, loss of appetite which lead to weight loss (about 20+ pounds), pain upon lifting anything (even small things), symptoms worsened in the heat (something hard to get away from in AZ! :) ), couldn't stop shaking in the middle of the night sometimes.
Current Status: Always a dull headache . . . even almost 4 months after what I think was a successful 2nd BP. I literally "never" got headaches before the CSF leak, so this is all new to me. I feel pain in my neck, back and top of my head if I do too much, headaches worsen during times of stress, my time of the month, extreme heat or cold weather including heavy winds or change in barometric pressure which in turn makes me have to lay down and rest for relief, although I do still have a dull headache lying down now too. I am on occasion (a few times since last BP) still dealing with waking up a couple of hours after going to sleep with anxiety and shaking that I take a low dose anti-anxiety med for, but I think that is part of working through all of the unknowns of this.
Other Info: I am trying to be optimistic and yet realistic (as someone said "to make the emotional battle easier." I am hoping a year from now I will be back to "normal," if that is at all possible, until then I try to take things day by day and am learning to live with the pain I have, thankful that it isn't as bad as it was and hoping it never returns!
This Website has been a tremendous help because I no longer feel "alone" even if I am surrounded by a supportive family . . . because I have found others that understand! I don't mean to sound so dramatic . . . it has just really helped! Thanks!

[a real drip]

bump *bumpity bump* (message has to be at least 10 characters long) :D

[LauraL840]

I've noticed lots of new posters lately, thought it was time to bump up this thread! Please update if you've already posted and your status has changed! If you've never posted, this is a great place to read leak history / imaging and procedure history and to ADD YOUR OWN! :D :D

[horseaholic]

Age: 49
Gender: Female
Type of Leak: Unknown
First Sign of Leak: 1/2/08
First Diagnosed: Not found yet
Brief Summary of Tests to date: MRI, CT Myelogram, Radionuclide, LB puncture (0 pressure)
Brief Summary of Treatment to date:Bed rest, steroids, caffeine, 3 blood patches
Current Symptoms:Ringing in ears, pressure headache when vertical
Current Status:Go to Mayo 3/10
Other info:
__________________

[dreb]

Age: 38
Gender: Female
Geographic Region: South Florida
Type of Leak: Spontaneous CSF leak
Location of Leak: Thoracic Spine
Reason for Leak: Unknown
Clinic/Doctor: University of Miami/Jackson Memorial Hosp/Alan Levi, MD
First Sign of Leak: Pressure headache and pain in the occiptal area in back of my head in September 2005
First Diagnosed: April 2007
Misdiagnosed in 2005/2006 with: - Migraines (took effexor, topomax, and imitrex X 3 months w/ no relief)
-Subluxation in neck C1-C2
Summary of Tests to Date: - MRI's head, c-spine, t-spine and l-spine
-Cine MRI
- CT Myelogram (4 times)
Summary of Treatment: -Surgery 5/07 to repair leak at T-10/T-11 w/ placement of lumbar drain for 6 days
-Blood Patch directed to T-9 - 5 days post-op 4 ml blood/not tolerated well, was very weak from surgery
-Blood Patch directed to T-9 in 10/07 - 24 ml blood
Symptoms prior to treatment: -Severe occipital pressure headaches when standing, complete relief when lying down (my brain literally felt like it was going to explode)
-pressure in head when bending over, sneezing or coughing
-severe neck pain and intrascapular pain between the shoulder blades
-ringing in the right ear
-weakness/numbness right arm especially at night
-naseau& vomiting/loss of appetite/weight loss
Current symptoms: Milder pressure headaches, neck pain, ringing in right ear with hearing loss, pain between shoulder blades
Current status: Seeing Wouter Schievink, MD end of March for evaluation and probable treatment.
Other info: After surgery was told that I had other leaks above site of surgery. Major improvement after surgery, but still have symptoms and at least 2 leaks in the thoracic spine with many, many cysts on the spinal cord. 2 blood patches have not helped.

[Pinwheel]

Age: 46

Gender: Female

Geographic Region: Chicago, IL

Type of Leak: Cranial - Ear

First Sign of Leak: Oct 2007 - I think I have had it for many years

First Diagnosed: June 2007

Brief Summary of Tests to date: MRI/MRA w/dye of the Brain CT Scans CT Cisternogram -

Brief Summary of Treatment to date: Craniotomy October 2007 Lumbar Drain in for 9 days to try to seal second leak after surgery. Still under the care of my neursurgeon and ear surgeon.

Current Symptoms: Headaches, Stiff Neck, Drainage/Wet Ear, Ringing, Whooshing Sound in my head, Pressure when bending or rising. Sometimes my nose runs or feels damp.

Current Status: Recovering from surgery-:eek:

Other info: Working on trying to find out why this happend, possible intracranial hypertension along with numerous ear infections

[curranmom]

Age: 28

Gender: Female

Geographic Region: Milwaukee, WI

Type of Leak: CSF leak from spinal injection during labor. Confirmed IH but couldn't find leak yet.

First Sign of Leak: Dec 2nd 2007

First Diagnosed: Dec 16th 2007

Brief Summary of Tests to date: MRI without contrast of the Brain and CT Scan

Brief Summary of Treatment to date: Since Dec 16th 2007 to date today (3-2-08) I have been through 5, yes 5 EBP's performed at West Allis Memorial Hospital by Dr.Richard Lennertz (anesthesiologist) Neurosurgeon Dr. Barton. Bed rest(cause that works with three kids), caffeine, percocet, you name it.

Current Symptoms: Headaches, Stiff Neck, Left Ear pain, Ringing, echoing sounds. Pressure when bending or rising. Sometimes I feel ike I am looking through a tunnel.

Current Status: Waiting to see if 5th ebp worked on 2-21, headaches come and go but still horrible when standing. Very sore from procedure this time.

Other info: Struggling tremendously with doctors here, any advice of doctors that will listen and not srug you off and not believe you!? :confused:

[dagaz]

AGE: 39
GENDER: FEMALE
GEOGRAPHIC REGION:Alberta Canada
TYPE OF LEAK: Crainial
FIRST SIGN OF LEAK: After having a bi-frontal crainiotomy and packing was removed I sneezed but tried to suppress it because I was told not to sneeze, Immediately csf fluid poured out of my nose filling a juice cup and a bit with in seconds. I had accidentally riped the entire internal stitching out
FIRST DIAGNOSED:The 25th of February 1993 two days after first surgery
TESTS: Several C.T.'s and M.R.I'S
TREATMENTS TO DATE: 6 bifrontal craniotomies, LP shunt,1st V.P shunt during 3rd bifrontal craniotomy, 8 V.P. shunt revisions along with a programable V.P. shunt: ventricles became dependent on shunts, ended up with Hydrocephalus, 1 Craniofacial Craniotomy, all in attempt to repair leaks. Grand Total... or very close to it... I'm starting to loose count...15 surgeries...

CURRENT SYMPTOMS: Severe low pressure head aches, helped when laying flat, large amount of CSF leaking rhinoreah way, on hydromorph contin and Tylenol 3 for pain.

All surgeries were attempts to repair leaks except 2 which one was to remove brain tumor and the other for hydrocephalus with blocked shunt.

Dagaz

[LauraL840]

Thought I'd bump this up AND include the information that I am collecting for the spreadsheet!

If you haven't yet filled this out, please do! Even if you don't have answers to all the 'fields', fill out as much as you can and you can always edit it later and add information!

You can 'cut and paste' the topics into a reply so that you don't have to type each out and forget any of the fields. If you don't have information for a field, please mark "N/A" or "unknown".

Thanks!

Age:
Gender:
Location:
Treating Facility/Doctor:
Type of Leak (Cranial/Spinal/Both/Unknown):
Spontaneous / Traumatic:
First Sign of Leak:
First Diagnosed:
Brief Summary of Tests to date (may or may not include some of the following):
Lumbar Puncture (s) & Opening Pressure if documented
Beta II Transferrin
Imaging Studies to date (may or may not include some of the following):
MRI W/WO Contrast
CT W/WO Contrast
MRI Myelogram
CT Myelogram / Post Myelogram
Radionuclide Cisternogram / Scintogram
Has Leak Site been ID'd by Imaging:
Did Imaging Show (include any 'results' not listed): Meningeal Enhancement
Tonsillar Herniation
Chiari (acquired or other)
Brief Summary of Treatment to date:
Has Treatment Resolved Leak:
Possible Underlying Conditions Contributing to Leak (AKA - things that make you go "Hmmmmmmm"):
Current Symptoms:
Current Status:
Other Info:

[Desert_hawk]

Age: 34

Gender: Female

Location: Indiana

Treating Facility/Doctor: Indianapolis neurosurgical group Dr Aaron Chone

Type of Leak (Cranial/Spinal/Both/Unknown): Spinal

Spontaneous / Traumatic: Spontaneous

First Sign of Leak: Feb 07

First Diagnosed: 9/07 S

Brief Summary of Tests to date (may or may not include some of the following):

Lumbar Puncture (s) & Opening Pressure if documented. Yes, do not know the pressure

Beta II Transferrin N/A

Imaging Studies to date (may or may not include some of the following):

MRI W/WO Contrast Yes 10/07

CT W/WO Contrast Yes 10/07

MRI Myelogram Yes, 3 to date

CT Myelogram / Post Myelogram N/A

Radionuclide Cisternogram / Scintogram N/A

Has Leak Site been ID'd by Imaging: Yes

Did Imaging Show (include any 'results' not listed): 1 large leak at T8 spinal cysts throughout.

Meningeal Enhancement N/A

Tonsillar Herniation N/A

Chiari (acquired or other) N/A

Brief Summary of Treatment to date: 1 leak site at present, 6 blood patches at T8 site. Surgery 12/07

Has Treatment Resolved Leak: Unknown at this time

Possible Underlying Conditions Contributing to Leak (AKA - things that make you go "Hmmmmmmm"): I have no clue


Current Symptoms: Mild headache starting back up, Body shakes a lot, pain when coughing or laughing, stiff neck.

Current Status: With all 6 of my BP I felt better for a few day then the pain would return slowly, after the surgery I felt really good but still just not quite right, I feel that old familar pain returning and It's just a matter of time before it come on full force.

Other Info: I hate living life laying down. I am very happy I found this board and hope to gain more insite on this condition.

[leakylady2]

Age: 59

Gender: Female

Type of Leak: Spontaneous Never Identified where altho I have multiple cysts on spinal cord
First Sign of Leak: Episode of Vertigo with PPP (pee,poop,puke) Head pressure, changing vision taken to hospital 2x's and 2'xs at home. Drs seemed to think I was so low at that time is why I had the episodes.

First Diagnosis: Nov 2004

Brief Summary of Tests: LP with no opening pressure taken but they had to stand me up to get any. (A real GEM of a Dr) :(

Brief Summary of Imaging: MRI with&WO contrast , CT W/WO contrast, MRI Myelogram, CT myelogram for 3 days, radionuclide cisternogram

Treatment: EPB

Current Symtoms/Status: Wake up good, get out of bed and downhill it goes. About 10 to 15 min the pressure is there and there is some pain, By an hour the pain has escalated and I HAVE to lie down.Of course sometimes its sooner, sometime later but havent been upright for any real length of time since this started. Have the ringing of the ears intermittently, nausea if I try to push staying up. Have some hearing loss. Vision can change on me also.
Have to plan the shower, washing hair etc.

Other Info: I tried taking some pain pills but all they do is make me feel even more weird. I have hard enough time remembering and making complete sentences without that in me. The only thing that helps is to lie down.Have always had the acid reflux so this laying down thing is a real treat sometimes.Thank goodness have very supportive hubby and family. Have missed so much with the g-kids not to mention my life as a working gal at a job I loved. Was accepted for SS disability within a couple months of application. Am going back to Mayo in May to see if something can end this torturous life.

[Christa]

Age: 37

Gender: Female

Type of Leak: Spontaneous Cerebral Leak,Secondary leak as a result of Lumbar Puncture

First Sign of Leak: Massive headache one day, next morning, intense neck pain/stiffness,
terrible headache, nausea, pressure in head, water sound in left ear.

First Diagnosed: August 2007 in the ER by a very persistant doctor who knew something was not right and did not stop until he figured out what it was after 2 days of testing.

Brief Summary of Tests to date: CT scan, blood tests, Lumbar Puncture, 3 MRI's with and without contrast - first 2 MRI's showed brain sagging low onto nerves

Symptoms: Neck stiffness, decreased hearing in ears, double vision for 2 months, headaches, right arm pain and tingling at times, Parkinsons like shaking in arms and hands at times, dizziness at times, nausea, ringing or popping in ears

Brief Summary of Treatment to date: Bedrest for 2 -3 months up to 21 hours a day, then slowing increasing being vertical over the next month or so. It took 4 months to come off bedrest completely, decreased salt intake, coffee

Current Symptoms: slight beating noise in right ear, neck stiffness and headaches when I am up too much.

Current Status: I have been off work since this all started but am planning on going back to work just 3 hours a day starting mid March 2008, to see how I tolerate it. I live in Canada and was able to get Employment Insurance for the first 4 months then I was able to get Long Term Disability without any difficulty.

Other info: My neurologist had only seen 2 other people in his life with this condition, so he was little help and my own doctor had never heard of this so she learned just like me. I wish I had found this site alot sooner. I really felt like I was the only person on earth with this condition.

[dkdreamer1]

Age: 47
Gender: female
Location: melbourne Florida
Treating facility: local nuerologist, pain managenet, nuerosurgeon. Local hospital, Michigan nuero center, shands, mayo jacksonville
Type of leak: not sure
Cause: spontaneous
First sign: Aug 2006
First diagnosed: Aug 2006
Tests: low pressure on opening >5
Imaging: multiple MRI's, 2 cisternograms, ct mylegram
Leak identified: not by imaging, possitive cisternogram results
Treatment summary: hospitalized Aug 06 and Oct 07 fluid and pain mgmt. 2 lumbar
patches, 4 cervical patches, pain meds
Treatment resolving leak: patches help for short periods. have periods better then others
Possible underlying conditions: believed by Drs to have connective tissue disorder
Current Symptoms: unrelenting headache at base of skull, naseau and vomiting when up
longer then 2hours, autonomic malfunction including blood pressure
temperature, breathing, etc. Salty fluid dump in mouth
Current Status: hanging in limbo. all doctors say i have leak but can't find. They are
continuing blood patches in hopes it will eventually seal.

[suebear6]

Age: 39
Gender: Female
Location: Lake Worth, FL
Treating Facility/Doctor: Cleveland Clinic Weston, FL Dr. Salgado (neurologist), Dr. Villasuso (ENT)
Type of Leak: spinal leak/tear after lumbar puncture for epidural during childbirth. Two punctures and epidural didn't take effect until AFTER the baby was born
First Sign of Leak: kaleidoscope headache and painful, red, swollen puncture mark on my back when moved from delivery room March 2, 2007
First Diagnosed: March 28, 2007
Brief Summary of Tests to date: MRI and CT Brain W/WO Contrast, Echocardiogram, EEG and BAEP, MRA and MRV Brain WO Contrast, ENG/VNG (balance test), Audiogram, Rotary Chair test, Posturography, VEMP, CT Sinus scans, Spine x-rays
CT Sinus October 5, 2007 small cyst or polyp involving the left maxillary antrum
camera up sinuses January 4, 2008 Sinusitis another 3 weeks of Clarithromycin
CT Sinus January 28, 2007 now have large polyp/mucous retention cyst
Has Leak Site been ID'd by Imaging: NO
Brief Summary of Treatment to date:
Drugs: NONE helped, tons of side effects (Fiorocet, Topomax, Verapamil, Imipramine, HCTZ, Gabapentin), Vestibular therapy, Massage therapy occiptal ridge, sinuses, neck, back, Ultrasound neck, shoulders, back
Has Treatment Resolved Leak: NO
Possible Underlying Conditions Contributing to Leak (AKA - things that make you go "Hmmmmmmm"):
previous neck/spine injury rear ended by a car 11/12/93.
Rear ended again by a delivery truck in 2001
C6 radiculopathy, brachial plexus nerve damage injury (shoulder) from 1st accident
Current Symptoms: headache within minutes of waking up in the morning (they are calling them chronic daily headaches?!? that are combination low pressure, migraine and tension), vertigo and off balance episodes, sharp stabbing right ear pain with certain head movements and also when using eyes. Concentration and memory problems. Can't read for more than a few paragraphs. Exhausted. Need to get head down every few hours to recharge. Nauseaus, 30 pound weight loss. Tingling head, intermittent cold index finger. Neck pain and pressure. A 2 inch section of my spine (where all the punctures went in maybe?) that hurts and won't arch backwards anymore. They say it's just a little arthritis.
Current Status: Told by the ENT that I'm a complicated case and referred back to the neurologist who has yet another useless (but billable) prescription drug. ENT says the ear pain is TMJ related (?!?) and the headaches are a central nervous system problem not an ear problem. PCP has started 4 weeks of chiropractic and ultrasound therapy which greatly increases my right ear pain. Grumpy, miserble and fed up with the medical community after a 370 day "migraine" attack (with no auras and relieved by getting my head down).
Other Info: draining feeling deep inside right ear, wet feeling sometimes. Numerous sinus infections (minimize the headache and replace it with a sinus headache which is easier to take).
Four kids: ages 6, 4, 3, 1

[sadlisa]

Age: 53
Gender: female
Location: San Diego Calif.
Treating Facility/Doctor:
Type of Leak (Cranial/Spinal/Both/Unknown): ? probably cranial, maybe neck
Spontaneous / Traumatic: think traumatic
First Sign of Leak: Meningitis 2/2001
First Diagnosed: ? 2/20/2008 ?
Brief Summary of Tests to date (may or may not include some of the following):
Lumbar Puncture (s) & Opening Pressure if documented LP opening pressure 2004 myelogram 15cm but pillow was placed under stomach
Beta II Transferrin
Imaging Studies to date (may or may not include some of the following):
MRI W/WO Contrast 2002(w&wo),2004(w&wo),2005(w&wo),2008(w&wo) brain-2002, 2004(w&wo)2006(wo) neck-2006(wo) thoracic
CT W/WO Contrast 2006 mastoids (wo), 2007 sinus(wo)
MRI Myelogram
CT Myelogram / Post Myelogram 2004 myelogram no CT-2008 myleogram ct sinus and skull base only
Radionuclide Cisternogram / Scintogram 2005 head-2008 head, lumbar and part neck
Has Leak Site been ID'd by Imaging: no
Did Imaging Show (include any 'results' not listed):disc degeneration
Meningeal Enhancement no
Tonsillar Herniation no
Chiari (acquired or other) no
Brief Summary of Treatment to date: none
Has Treatment Resolved Leak: no treatment
Possible Underlying Conditions Contributing to Leak (AKA - things that make you go "Hmmmmmmm"): Neck/head injury 2001 slamming neck in truck door causing hyperextension (I think right before I got meningitis), Heavy lifting and moving sand day I got meningitis. Hit in ear with golf club at age 5.
Current Symptoms: lightheadedness, chronic headache(daily) neck stiffness radiating to shoulders, right arm weakness, chronic left sinusitis, general weakness. sometimes slight blurring of vision in right eye. All symptoms increased with exertion.
Current Status: High ratio in pledget in left sinus, waiting consult with neurosurgeon
Other Info: disc degeneration at c4c5, c5c6 causing severe neural foraminal narrowing

If I think of anything else or get more information from the neurosurgeon I will let you know. Thanks, Thia

[brain drain]

Age: 47
Gender: female
Location: Southwestern Pennsylvania
Treating Facility/Doctor: West Virginia University Hospitals –Ruby Memorial
Type of Leak: Cranial
Spontaneous / Traumatic: Spontaneous
First Sign of Leak: August 2007
First Diagnosed: January 2008
Brief Summary of Tests to date (may or may not include some of the following):
Fluid tested positive
Lumbar Puncture – low opening pressure
Imaging Studies to date (may or may not include some of the following):

CT W/ & WO Contrast
Radionuclide Cisternogram
MRI W/ Contrast
Did Imaging Show (include any 'results' not listed):
Meningeal Enhancement-no
Tonsillar Herniation-no
Chiari (acquired or other)-no

Has Leak Site been ID'd by Imaging: NO

Brief Summary of Treatment to date: none yet
Has Treatment Resolved Leak: N/A
Possible Underlying Conditions Contributing to Leak : Specialist seems to think migraines are related – diagnosed with those 10 yrs. ago
Current Symptoms: extreme fatigue, headaches, neck & shoulder stiffness/pain, crackling in right ear, loss of hearing in right ear, some numbness in right cheek, continuous fluid leak out of right side of nose and down back of throat- leaks more with activity
Current Status: undergoing exploratory surgery 3/17/08- will have blood patch if leak is found
Other Info: Have taken Nortriptyline for the migraines – may have been camouflaging pain & symptoms related since it is a chronic painkiller. Have experienced the extreme fatigue since April 2007 but didn’t notice leaking until August 2007.

[GingerLox]

Age: 45

Gender: Female

Location: Northeast Kansas

Treating Facility/Doctor: Ku Medical Center/Mayo Clinic Minnesota/UTSW

Type of Leak : Cranial leak, otorrhea which manifests as rhinorrhea

Spontaneous / Traumatic: Possible traumatic or possible Lupus damage

First Sign of Leak: 8+ years

First Diagnosed: 5 years ago

Brief Summary of Tests to date : CT w/contrast, radionuclide cisternogram w/ pledgets by LP, flourescein study by LP, flourescein study of sinuses by LP, CT cisternogram by LP

Positive study results: Positive pledget for Beta Transferrin in left cribiform plate

Possible Underlying Conditions Contributing to Leak: I was diagnosed with Lupus 13 years ago - after the birth of my youngest daughter - leading to multiple organ complications. One of the many complications I have faced is damage to my brainstem, cranial nerve X, which resulted in extreme Autonomic Failure. Many of the bodies automatic functions were affected. One of those functions damaged was the heart rate mechanism, resulting in eventual physical damage to my heart, causing heart block. The heart block forced my irradic heart rate to form 6 additional electrical pathways to my heart. I received a pacemaker which then indicated that my blood pressure had also lost its ability to function. After they implanted my pacemaker, I was unable to be upright or stand up, as my brain center was unable to control my blood pressure to keep it up while I was in a vertical position. During this time I also developed Diabetes Insipidus, which is controlled by the posterior of the pituitary gland. It is possible that the Lupus damaged the arachnoid villa system of my csf system, causing the pressure to cause a leak. Although, I tend to think all of these brain complications, along with the increasing CSF leak were all brought on by a fall I had 15 years ago. I believe I incurred a closed TBI as a result of a fall that left me paralyzed from the neck down for 15 minutes. It is my thought that when my spine was bent at an unnatural 90 degree angle, the csf was forced into the brain with such force that it caused the thin skull bone to break. In my humble opinion, my leak might have been caused by a combination of both of these factors.

Current Symptoms: daily rhinorrhea, and otorrhea that is heard and felt leaking through the middle ear and out through the eustachian tube when I lie on each ear. The left ear leaks much worse than the right ear. I can record this leaking, and the doctor's have been able to hear the fluid dripping through the ear with a stethoscope.

Current Status: I am currently seeking a doctor's opinion in Dallas regarding a possible Perilymphatic Fistula with other Skull Base damage. The doctor's have been trying desperately to locate the leak.

Other Info: Since the otorrhea appears to be the primary source of the leak, I am now seeing doctors who subspecialize in ears damage and disease. The following are audiometric testing which may be beneficial in aiding them in my diagnosis of a csf leak through the ear, otorrhea:
Positive glucose strip
Mild low-frequency hearing loss
Left mastoid slightly less pneumatized that right
2.5 times enlarged endolymph sac
Diagnosis of Menieres (although I have no dizziness - this can be
misdiagnosed - meniere's and an ear fistula often have the same
symptoms)
Brainstem Evoked Response - Bilateral Positive SP/AP ratio slightly elevated
Otorrhea that is audible through digital recording and stethoscope
Diagnosis of Palatal Myoclonus (based on the docs ability to hear those
sounds through the stethoscope)
Absent acoustic reflexes
Hypersensitivity to loud noises
History of Dysautonomia (damage to the brainstem)
History of Diabetes Insipidus (malfunction of the pituitary gland)

[wobbles]

age: 59

gender:female

location: Fresno,CA

Treating Facility/MD: Kaiser Permanente/Don Yoshimura MD(great doc)til 1/1/08
New insurance meant chgs...Dr.Victoria Walton (neuro -
fired me after blood patch failed)waiting for appt in May
new headache spec - Dr.Melvin Helm
Type of Leak: Unsure

Spontaneous/Traumatic: possibly both (complicated head&neck Hx-horses....)

1st Sign of Leak: 10/84 following suspected cranial Fx....resolved on its own
1st diagnosis:
10/06 spontaneous onset of postural headaches and neck
pain (resolved 3/31/07 w/EBP)Dx 3/26/07
05/01/07 slight trauma caused recurrence(bed rest resolved
1/1/08 slight neck trauma - started leaking from rt nostril
and headache 6 hrs later (just like before)Dx 2/21/08
Brief Summary Testing: Beta II Transferin (negative) 1/07

Imaging Studies: MRI 2/22/07 no enhancement, enlarged pituitary w/post
gad enhancement

RC 3/26/07 no leak found, some "hot" pledgelets (but
considered negative due to levels - only in place 3 hrs)

MRI 2/21/08 positive meningeal enhancement (slight)

Has Leak been ID's: NO

Brief Summary of Tx: lots of useless drugs in 2006/7 episode as we sorted out
what was causing headaches:
Tegretol (made headache worse ever at 1 1/2 hrs after)
Fentenyl Patch (helped- but hell to get off of)
Morphine - oral for breakthru pain (currently use when I
need a break from the pain)

3/31/07 EBP w/ 25ml blood at L4/5 worked instantly!
3/3/08 EBP w/ 18ml blood at L1/L2 didn't work - seems to
have created some add'l symptoms like joint aches

Has Tx Resolved Leak: Not Yet

Possible Underlying Conditions: Other than repeated neck trauma - none

Hmmmmmm.......I do have a oddity at T8/T9 that they don't know if it is a sub-arrachnoid cyst that freely communicates (?) or a congenital narrowing w/ extra vascularization....radiologists can't agree....

Current Status: Basically incapacitated as I cannot be up long. Head hurts all
the time but worse when upright. Fluid drips down rt side of
throat and out nose when upright but docs tell me it isn't
CSF based on prev.test. Feeling of irritation inside head
3/3/08 blood patch.(dripping less since EBP but also staying
flat more....so who knows relation to EBP)
Vertigo
Tinnitus right ear mainly
Sometimes neuro symptoms when upright (bi-lat.arm weak)
Rt sided facial numbness, drooping when upright

hope this helps!!!!

[SUZANNEM]

Age: 32
Gender: Female
I Go In For My Second Puncture Tomorrow. I Have Been Dealing With The Ha For 10 Yrs After A Motor Vehicle Accident. It Comes And Goes, But The Neck/sholder Pain Is Contant. I Hope They Find Something As I Have Been Wrongly Diagnosed For Soooo Long! Will It Still Show Low Pressure If I Do Not Have A Ha Now?

[hayburner]

Hi I am new here. I read on the sticky topic w/advice to post here.


Age: 39

Gender: F

Type of Leak: Spontaneous spinal

First Sign of Leak: Early Tues. AM in bed, 2/26/08. Rolled over, felt sharp spasm under right shoulder blade, right arm kept falling asleep after that. TuesAM had slight headache and stiff neck that increased over next day and a half.

First Diagnosed: Thurs 2/28/08, local hospital.

Brief Summary of Tests to date: CT scan, Xray of back (initially upon arriving at ER), MRI of head, neck, thoracic regions, w/contrasting dye, radioactive tracer, three spinal taps, misc. blood tests to rule out things at first.

Brief Summary of Treatment to date: Initially constant bed rest (not that I wanted to do anything else), IV fluids, and given furanol which helped control intensity of headache. Blood patch in thoracic region 3/14/08.

Current Symptoms: Sore back from blood patch. OK in AM, burns by day end. Neck sometimes sore. These seem to improve daily since blood patch performed. Nagging soreness/burning under right shoulder blade (has not left entire time). Occasional right arm falling asleep at night. Headache GONE.

Current Status: No idea. Wait and see, take it easy, resting, not lifting or doing much of ANYTHING, I'm scared, hoping the neurologist took the best steps possible, I liked her a lot and she seemed super smart.

Other info:[/QUOTE]

[Michelle ANNE]

Age:39
Gender:female
Type of Leak:They still haven't found it
First Sign of Leak:severe head and neck pain
First Diagnosed:February 2008
Brief Summary of Tests to date:5 MRI, CT, Spinal tap, cisternogram, mri myelogram
Brief Summary of Treatment to date:vicodin, phenigran, blood patch
Current Symptoms:severe head and neck pain, tinnitus, blurry vision, pins and needles in arms and legs,fullness/pain in ears,extreme pressure behind eyes
Current Status:On bed rest at least until April 15th. Have been unable to work for almost three months now.

[msm]

Age: 35
Gender: Female
Type of Leak: Spontaneous, possibly bi-lateral, T-12
First Sign of Leak: Dizziness, blocked ears, heaviness, and feeling like I had no center of gravity. No headache.
First Diagnosed: 2005, one year after symptoms began.
Brief Summary of Tests to date: Ct Myelos, cisternograms, MRIs -- a half dozen of each.
Brief Summary of Treatment to date: 14 blood patches at various levels; 2 glue patches; 6 months of complete bedrest (in a corset!), just to see if not moving would help any (answer in a word: no). Regular acupuncture for symptoms.
Current Symptoms: Headache, fogginess, neck stiffness, "no center of balance", tinnitus and fullness ears; tightness in face and jaw, nerve syptoms in legs and left arm due to damage from blood patches.
Current Status: The leak is still leaking, but I have been getting incrementally better over last year. Slow but steady progress.
Other info: My last four years have been a roller coaster. I am very grateful to be somewhat more stable in the last while, now that I have decided to stop all tests and procedures. The 16 procedures I had for my leak only made me worse (every last one of them!), and in my case the best stategy has been to live life carefully, slowly, in a way that is respectful of the leak in my spine. It is only since I stopped yo-yo-ing in terms of my exertion, and looking for the magic bullet in a medical system whose technologies and research have not *quite* caught up with this syndrome yet, that I have begun to slowly heal. Many people on this message board have written "one day at a time," and that's pretty much become my way as well.

[TinNickels]

Age: 46
Gender: Male
Type of Leak: Cranial - Following retrosigmoid acoustic neuroma surgery

First Sign of Leak: Nasal drainage immediately following surgery (8/07)

First Diagnosed: Diagnosed in hospital post-surgery, thought it sealed, but 7 months later now they think maybe it didn't.

Brief Summary of Tests to date: MRI w/ Gd contrast

Brief Summary of Treatment to date: Inserted lumbar drain in hospital to reduce pressure for 3 days. Flow running out my nose stopped. They removed the drain and sent me home. Some nasal drainage recurred over the next few days, but seemed to subside on its own. Followed normal post-surgical recovery including rest, steroids, and OTC pain meds.

Current Symptoms: Other post-surgical issues (unilateral deafness, balance problems, facial palsy) have largely resolved, at least to the extent they are going to. I'm stuck with the deafness on one side and will always have some minor balance and facial nerve problems. But the headaches remain 24x7. They vary in intensity, but most days I'm functional with the use of acetaminophen. They are focused on my neck and behind my eyes. Severity is highly positional. Leaning forward is hell. Reclining back is somewhat better. There is some peripheral pain down into my right shoulder, but up until reading here, I hadn't considered that a symptom. I have some nasal discharge and my eye tears excessively on the right (surgical) side.

Current Status: My NS has acknowledged that the headache has lingered too long to be considered post-surgical and now suspects a CSF leak. I've been rationalizing for months that the pain was all post-surgical, but based on his suspicion I've done more research on my own and now I'm pretty convinced I have a leak as well.

Other info: I'm still waiting on the MRI results from yesterday. But from what I'm reading here, while that might indicate a leak, I don't know that it will pinpoint it. However, since my leak site is almost certainly the surgical site, maybe that isn't a big deal. I'm somewhat dreading the prospect of another cranial surgery, but if it stops the pain it would be worth it.

[brain drain]

Age: 47
Gender: female
Location: Southwestern Pennsylvania
Treating Facility/Doctor: West Virginia University Hospitals –Ruby Memorial
Type of Leak: Cranial
Spontaneous / Traumatic: Spontaneous
First Sign of Leak: August 2007
First Diagnosed: January 2008
Brief Summary of Tests to date (may or may not include some of the following):
Fluid tested positive
Lumbar Puncture – low opening pressure
Imaging Studies to date (may or may not include some of the following):

CT W/ & WO Contrast
Radionuclide Cisternogram
MRI W/ Contrast
Did Imaging Show (include any 'results' not listed):
Meningeal Enhancement-no
Tonsillar Herniation-no
Chiari (acquired or other)-no

Has Leak Site been ID'd by Imaging: NO

Brief Summary of Treatment to date: none yet
Has Treatment Resolved Leak: N/A
Possible Underlying Conditions Contributing to Leak : Specialist seems to think migraines are related – diagnosed with those 10 yrs. ago
Current Symptoms: extreme fatigue, headaches, neck & shoulder stiffness/pain, crackling in right ear, loss of hearing in right ear, some numbness in right cheek, continuous fluid leak out of right side of nose and down back of throat- leaks more with activity
Current Status: undergoing exploratory surgery 3/17/08- will have blood patch if leak is found
Other Info: Have taken Nortriptyline for the migraines – may have been camouflaging pain & symptoms related since it is a chronic painkiller. Have experienced the extreme fatigue since April 2007 but didn’t notice leaking until August 2007.
UPDATE: Leak found and repaired during endoscopic exploratory surgery on 3/17/08. Repaired with mucosal tissue graft from left septum, Duragen applied followed by Tisseel; MeroGels were applied as a packing to further bolster the mucosal graft. Surgery performed at West Virginia University’s Ruby Memorial Hospital by Dr. Hassaan Ramadan, MD, MSc, FACS - Morgantown, WV

Am now symptom free (NO LEAKING:)) and returning to work full time on 4/14/08 with limitations on lifting and bending. Am scheduled to see a neurologist to have pressure tests done to see if that is what may have caused the spontaneous leak.

[shirl000]

Age: 37
Gender:F
Type of Leak:from LP
First Sign of Leak:Headache a day after LP
First Diagnosed:few days after LP
Brief Summary of Tests to date:LP
Brief Summary of Treatment to date:soon to be EBP
Current Symptoms:dizzy, nightmares, pain and burning in head, neck and spine
Current Status:sick:(
Other info:LP on 3/26/08

[BOBinFLA]

Name: Bob in FLA

Age: 56

Gender: Male

Type of leak: Spontaneous - Site undetermined

First sign of leak: Oct. 2005

First diagnosed: Apr. 2006 (after initial misdiagnosis)

Brief summary of tests to date: Infectious disease studies, MRI x 15, CT Myleogram x 5, Cisternogram x 1

Brief summary of treatments to date: LP x 2, EBP x 7

Current medications: Prescription; Pain - Oxycodone (10-15mg) every six hours, Ultram(tramadol HCl)100mg (1/day), Celebrex (200 mg) PRN, Lamictal (mood stabilizer) 75mg 1/day, Xanax (.25 @ bedtime), Lunesta 3mg (sleep aid) OTC: Senocot & docusate sodium (for opiod induced constipation.

Current symptoms: Constant frontal headache (level 6-8), chronic fatigue, mild tinnitus (right ear).

Current status: Unchanged/stable

See "CSF leaks" main posting page for brief history.

[curranmom]

Age: 28

Gender: Female

Location: Milw, WI

Treating Facility/Doctor: St. Luke's-NeuroSurgery & Spine/ Dr. Cully White - NS

Type of Leak : Spinal

Spontaneous / Traumatic: Traumatic (occurred when giving birth to my son)

First Sign of Leak: about 8 hrs after labor on Dec 2, 2007

First Diagnosed:About two weeks from Dec 2nd, 07

Brief Summary of Tests to date:

Lumbar Puncture & Opening Pressure = 4

Imaging Studies to date :

MRI W/WO Contrast
CT W/WO Contrast
CT Myelogram
Radionuclide Cisternogram

Has Leak Site been ID'd by Imaging: Yes finally!! they think around L3-4

Brief Summary of Treatment to date: Where do I begin...Bed rest, caffeine, naproxen, vicodin, percocet, IV caffeine drip with hydrating fluids, 6 blood patches........
1st patch = single volume 7cc's
2nd patch = single volume 10cc's
3rd patch = single volume 15cc's
4th patch = single high volume patch 40cc's
5th patch = double high volume 15cc's at L1 and 30cc's at L4
6th patch = broad spectrum from L3-5 high volume 60cc's
Laminectomy/CSF repair March 6th 2008

Has Treatment Resolved Leak: Currently recovering from laminectomy surgery symptoms have gotten better but still battling the ha's though not as bad but still hurt. Not sure if leak has been repaired.

Current Symptoms: New ear whooshing/ringing noises when laying on side, constant milder ha's, no feeling/numbness in left thigh (from surgery), stiff neck, nausea, not sleeping and when I do horrible nightmares, fatigue....when does it end????

Current Status: recovering from surgery and aching all over

Other Meds:
Lyrica 75mg 4x's daily
Tizanidine 6mg every 6 hours
Ondansetron 4mg 1-2tablets daily

[vheadley]

[B]Date: 5/24/08
[B][B]Username:Vheadley
[B][B]Sex: Female
[B][B]Age: 34
[B][B]Geographic Location: Avon Park, FL
[B][B]Name of Doctor/Treating Facility: I have seen 14 doctors if you count all the trips to the ER as 1 doctor!
Neurosurgeon- Dr. Lu
PMD- Dr. Montero
ENT- Dr. Ruiz
Neurotologist- Dr. Patni
Neurologist- Dr. Cambridge
(these are only the doctors I am still seeing)
Treating Facility- Florida Hospital
[B][B]Date of Symptom onset: 3/30/07
[[B]B]Duration of symptoms: 1.5 years
SX resolution: April 29/2008 (mostly resolved)
[B]Age at onset: 33
[B]Cranial/spinal/both: Unknown, suspect both
[B]Location: known was between C5 and T1
[B]Spontanious/Trauma-Possibly both- hit head hard in MVA in 2005, epidural caused leak in 2007
[B][B]Underlying/contributing disorders: Hypothyroidsm, TMJ, Scoliosis, RLS, HX of ear infections with tube placement in right ear at age 16, several disk herniations with spurring, Spondylolisthesis, migraines
[B]Tests done: CT scan brain, MRI with and without contrast cervical spine, MRI brain with and without contrast, X-ray cervical spine, Audiology testing, LP with CT myelogram and cisternogram, CT angio cervical
[B]Leak ID by imaging: NO
[B]LP opening pressure:DONT KNOW, IDIOTS DIDNT CHECK!!
[B][B]Meningeal enhancement: NO
[B][B]Tonsilar herniation: YES- " low-lying cerebellar tonsils" is all that was noted
[B][B]Treatment:Initial CSF leak in 2007- 4 days inpatient with IV fluids, bed rest, Dilaudid PCA, medications NOW- meds: Morphine sulfate ER 60mg BID PRN, Depakote 500mg, Fioricet, Neurontin 300mg
[B][B]Current status: Feeliing much better since the Depakote

[sweetpeans78]

Age: 29

Gender: Female

Location: Nova Scotia, Canada

Treating Facility/Doctor: unknown

Type of Leak (Cranial/Spinal/Both/Unknown): Unknown

Spontaneous / Traumatic: Spontaneous

First Sign of Leak: unknown

First Diagnosed: May 29, 2008

Brief Summary of Tests to date (may or may not include some of the following): None

Imaging Studies to date (may or may not include some of the following):None
MRI W/WO Contrast
CT W/WO Contrast
MRI Myelogram
CT Myelogram / Post Myelogram
Radionuclide Cisternogram / Scintogram
Has Leak Site been ID'd by Imaging:
Did Imaging Show (include any 'results' not listed):
Meningeal Enhancement
Tonsillar Herniation
Chiari (acquired or other)

Brief Summary of Treatment to date:None

Has Treatment Resolved Leak:N/A

Possible Underlying Conditions Contributing to Leak (AKA - things that make you go "Hmmmmmmm"):

Current Symptoms: cluster headaches, doubled and blurred vision

Current Status: Waiting for appt to see Neurologist or Neurosurgen

Other Info:[/COLOR] I was in to see an Optometrist about my doubled and blurring vision and come to find out nothing is wrong with my eye's but from what I told him he has diagnosed me with SIH. He is reffering me to see a Neuroligist. I've been having my headaches for as long as I can remember, going on about 15 years, and my GP figured it was migrane headaches.

[Concerned Gal]

Age: 26
Gender: F
Location: Australia
Treating Facility/Doctor:
Type of Leak (Cranial/Spinal/Both/Unknown): Known Spinal Leak
Spontaneous / Traumatic: Believe Spontaneous
First Sign of Leak: January 2006
First Diagnosed: May 2006
Brief Summary of Tests to date (may or may not include some of the following):

Lumbar Puncture (s) & Opening Pressure if documented - not recorded
Beta II Transferrin

Imaging Studies to date (may or may not include some of the following):

MRI W/WO Contrast - several, last being in December 2006
CT W/WO Contrast - April 2006
MRI Myelogram - No
CT Myelogram / Post Myelogram - August 2006
Radionuclide Cisternogram / Scintogram - May 2006

Has Leak Site been ID'd by Imaging: A big 'puddle' from T1 to T12, most prominent from T4-T8
Did Imaging Show (include any 'results' not listed):

Meningeal Enhancement - Yes, everytime. The last MRI showed reduced enhancement from first MRI, but still prominent
Tonsillar Herniation - Yes, 7mm
Chiari (acquired or other) - Yes. Unsure if result of leak. Maternal Aunt diagnosed with Chiari previously and decompressed.

Brief Summary of Treatment to date:
Has Treatment Resolved Leak: *sigh* No
Possible Underlying Conditions Contributing to Leak (AKA - things that make you go "Hmmmmmmm"): Ulcerative Colitis, Thyroid went Hypothyroid at one stage, but fixed itself, On Immunosuppressants since 2002 for Colitis, Remembered did have a massage therapist push my head down on my neck in July 2006 but not sure if this did anything.
Current Symptoms: Stiff/Pain Neck (fairly constant), limited neck mobility, if I look down/head down my head feels like it loses pressure and i get pain, when I lie down the motion of going from up to down makes my neck feel like it is going to snap, some vertigo when rolling over in bed
Current Status: Managing. Functioning in a limited capacity.
Other Info: Proud to have managed a successful pregnancy and delivered a beautiful bub via c-section under general anath. in 2008

[LauraL840]

Filling this out for my husband

Age: 50

Gender: male

Location: NC

Original Treating Facility: University of North Carolina Medical Center, Chapel Hill - Neurology and Spine / Pain Management Clinic

Current Treating Facility and Doctor: Dr. Wouter Schievink - Neurosurgeon, Cedars Sinai Medical Center, Los Angeles, CA

Type of Leak: Traumatic Lumbar

First Sign of Leak: September 3, 2006 following diagnostic lumbar puncture between L4-L5 (documented)

First Diagnosed: April 2007

Brief Summary of Tests to date:

Lumbar puncture 1 - (to check opening pressure and re-test CSF for chronic meningitis, 2 or 3 dry taps before wet tap opening pressure of 15 mm water)
Lumbar puncture 2 - (for first CT myelogram, 17 cm water)
Lumbar puncture 3 - (5/28/2008 for CT & MR Myelograms, 12 cm water)

Brief Summary of Imaging to date (in order):

CT Brain
MRI Brain with & without contrast
Repeat MRI of brain w&w/o contrast
MRI of lumbar spine w&w/o contrast
CT Maxillofacial w&w/o contrast (landmark sinus CT)
Radionuclide Cisternogram (head) and Scintogram (spine)
CT Cervical, Thoracic, and Lumbar Spine Post Myelogram
MRI full spine with myelographic sequencing (no lumbar puncture required)
CT Myelogram/Post Myelogram Cervical, Thoracic, and Lumbar Spine
MR Myelogram with intrathecal Gadolinium Cervical, Thoracic, and Lumbar Spine

** Leak has NEVER been documented by diagnostic imaging and he's had every available diagnostic imaging study done!**

Brief Summary of Treatment to date:

OTC meds (tylenol, ibuprofen, aleve)
RX pain meds (Percoset, Tramadol, Indomethacin, Lyrica, Oxycodone, Ativan, Amitriptyline, Haldol, Toradol, Celebrex)
RX 'headache preventative' (Imipramine,Carbamazepine),
Hospitalized for 8 days to run a course of DHE-45 (dihydroergotamine) to 'break' the pain (didn't do shquat),
and a trial of Solu-Medrol (IV steroids)

EBP #1 9/22/06, no real lasting improvement
EPB #2 4/07, some improvement
EBP #3 5/15/07, total disaster symptoms worsen
EBP #4 6/29/07, 30 sec after, headache is completely gone ... lasted only 4 days

Double High Volume EBP (failure) 5/14/2008, 21 cc's low thoracic and only 3 cc's lumbar - headache reduced, no lasting improvement **this was the first (least invasive) treatment done through Cedars Sinai by Dr. Louy via Dr. Schievink

Epidural FIBRIN (tiseel) Glue Patch #1 9/14/2007, 4 mL's injected at L2-3 ... reduced HA pain initially but no lasting relief ... Leak site is at L4-5 but doctor didn't want to 'go' there as that's where EBP #3 was done and IT was a disaster!
Epidural FIBRIN Patch #2 11/9/07, 4 mL's injected at L4-5 (FINALLY) with considerable difficulty! However he's had the greatest and longest lasting improvement since 9/2006
Epidural FIBRIN Patch #3 5/19/2008, CT-guided 6 mL's injected at L4-5 under moderate anesthesia and with some difficulty. One day two he had 1.5 hours of complete headache resolution.

Direct Surgical Repair 5/29/2008. Dr. Schievink decided that DH's best chance for HA resolution was a direct visualization of L4-5 site to repair. Even though the leak was NEVER imaged by imaging studies, DH got complete HA resolution with the CT-guided fibrin patch which 'confirmed' that the leak was at that location. (Fibrin "spread" is very localized to the area that it's applied, and does not run up and down the epidural space like blood does). Surgical visualization showed a 'blister' like defect on his dura left of midline between L4-5. When anesthesiologist 'increased' ICP, the blister 'seeped' CSF. Defect was covered with muscle which was stitched to dura, packed with fibrin and sewed shut.

Current Symptoms: One heck of a backache

Current Status: Headache FREE

Other Info: This is his 2nd leak episode with a 3 year leak-free period. First leak was in July 2003 following an LP for viral meningitis (which he had). We didn't know he had a leak, didn't know anything about PDPH (post dural puncture headache), so we never sought treatment and thought that his healing time was just prolonged due to severity of meningitis/encephalitis. It took 4+/- months for headache to resolve (dura to seal). In September of 2006 he experienced the same meningitis headache (it's one of a kind) with both fever and stiff neck so we're back in ER for LP. This LP was different. He says it felt like it popped when the needle went in. Turns out he had meningitis again, this time bacterial from Rocky Mountain Spotted Fever. Initial thought 3 weeks post LP was PDPH so he had EBP #1 and no one followed up, so we assumed that since it brought no lasting relief that he didn't have a leak and was going to take forever to heal just like last time....

[jacqsmom]

Age: 40

Gender: Female

Location: TX

Original Treating Facility: Scott & White/Pain Management Clinic

Current Treating Facility and Doctor: Scott & White/Pain Management Clinic- Dr. McDavid

Type of Leak: Cervical-traumatic (from cervical epidural steroid injection)

First Sign of Leak: June 6, 2008-headache and tinnitus started 10 minutes after the CESI.

First Diagnosed: Same day

Brief Summary of Tests to date: Cervical MRI without contrast

Brief Summary of Imaging to date (in order): Cervical MRI without contrast
Brief Summary of Treatment to date:
OTC meds: tylenol, ibuprofen, aleve
RX pain meds: darvocet, vicodin (neither one touch it!)
RX (don’t know what they do!): Raglen
EBP #1 lumbar (6-9-08) 20cc. Total pain relief lasted for 6 hours. Came back immediately after I sneezed 3 times. I thought this was crazy until I started doing research!
EBP #2 lumbar (6-16-08) 20cc. Felt a little better with headache relief, but still had a very “full” feeling in my head with tinnitus and blurry vision. Headache came back after 36 hours, and a fight with my step-daughter. Yelling=PDPH return. Not good.

Current Symptoms: Incredible headache that is relieved when lying down. Although the pain behind my eyes and in my temples is still evident when in the prone position. Tinnitus, sore neck and upper back pain.

Current Status: Doc called to tell me that the MRI was “normal” and no evidence of hematoma or anything “serious”. HA! I was told to wait it out and take pain meds. If the headache hasn’t gone in a couple weeks to come back for a cervical EBP. I’m not so sure that I want them sticking another needle in my cervical spine.

Other Info: I had a fall from a 6 foot height when working on a helicopter in the Army in 1993. I’ve been treated for migraines and chronic neck/back pain since. I heard of the “miracle” of CESI about a year ago, and have had successful relief of my upper back pain for 6 weeks at a time following the injections. I’m a little bitter right now, so forgive the sarcasm.

[dreb]

Age: 38
Gender: Female
Geographic Region: South Florida
Type of Leak: Spontaneous CSF leak
Location of Leak: Thoracic Spine
Reason for Leak: Unknown
Clinic/Doctor: University of Miami/Jackson Memorial Hosp/Alan Levi, MD
First Sign of Leak: Pressure headache and pain in the occiptal area in back of my head in September 2005
First Diagnosed: April 2007
Misdiagnosed in 2005/2006 with: - Migraines (took effexor, topomax, and imitrex X 3 months w/ no relief)
-Subluxation in neck C1-C2
Summary of Tests to Date: - MRI's head, c-spine, t-spine and l-spine
-Cine MRI
- CT Myelogram (4 times)
Summary of Treatment: -Surgery 5/07 to repair leak at T-10/T-11 w/ placement of lumbar drain for 6 days
-Blood Patch directed to T-9 - 5 days post-op 4 ml blood/not tolerated well, was very weak from surgery
-Blood Patch directed to T-9 in 10/07 - 24 ml blood
Symptoms prior to treatment: -Severe occipital pressure headaches when standing, complete relief when lying down (my brain literally felt like it was going to explode)
-pressure in head when bending over, sneezing or coughing
-severe neck pain and intrascapular pain between the shoulder blades
-ringing in the right ear
-weakness/numbness right arm especially at night
-naseau& vomiting/loss of appetite/weight loss
Current symptoms: Milder pressure headaches, neck pain, ringing in right ear with hearing loss, pain between shoulder blades
Current status: Seeing Wouter Schievink, MD end of March for evaluation and probable treatment.
Other info: After surgery was told that I had other leaks above site of surgery. Major improvement after surgery, but still have symptoms and at least 2 leaks in the thoracic spine with many, many cysts on the spinal cord. 2 blood patches have not helped.

3/08 - Saw Dr. Schievink at Cedars in LA. (Great doc)
MRI Brain - cerebellar tonsilar descent and enlarged pituitary
CT Myelo - many cysts with multiple leaks in the t-spine
High volume blood patch - 30cc in l-spine & 30cc in t-spine (still had ringing in ear after this procedure indicating that I was still leaking).
CT Myelo #2 - multiple leaks t-spine
Fibrin glue patch to 3 largest areas of leak

Many tests to see if I had a connective tissue disorder which was all negative.

Still having mild pressure headaches & mild neck pain. Tinnitus & hearing loss right ear persists. Still have extreme fatigue. Considering surgery in LA this year.

[vheadley]

jacqsmom- Just noticed that you are on Reglan and dont know what its for. I wanted to help you with that. Reglan is a nausea medication. sometimes doctors prescribe them with pain meds because they cause nausea. They sometimes also can help the pain meds to work a little better. I just thought it was really important for you to know what your taking. Please do yourself a favor and ask the doctors these questions when they are prescribing you meds. I am a nurse and I know how difficult they (doctors) can be, but it is very dangerous to take something and not know what it is for or what its doing to your body. Hope You get relief soon,, HUGS, Vonnie!!!!!

[KLane]

Age: 37
Gender: Female
Geographic Region: Chapel Hill, NC
Type of Leak: lumbar & thoracic? due to car accident or spontaneous?
First sign of leak: June 2006 or March 1994! Depending if you count severe migraines since accident. But completely disabling base of skull headache began June 2006
First diagnosed: June 2007 at Johns Hopkins
Brief? (that's funny) summary of tests: MRIs of brain & entire spine, so many CT myelograms I've lost count, several head CTs
Summary of treatment: fibrin glue injection (Hopkins), numerous (also lost count) CT-guided blood patches (Duke)
Current symptoms: cannot stand for more than 30 minutes, horrible pain at base of skull (MRIs showed brain "sagging".) Had been experiencing some improvement (could be upright 4 hrs./day) after last series of CT-guided blood patches at Duke in May. My leaks must have sprung!
Current Status: Waiting to hear from Wouter Schievink
Other info: I have discoid/cutaneous lupus. ANA titers are negative or very low, so most (I've seen a few) rheumatologists do not think it is systemic. Either way, I am told this would not be reason for my leaks, but I really want to hear what Dr. Schievink has to say about this.
Thank you, Debbie for the very helpful information!

[mindi]

Wow... what an ordeal you and your husband have been through! I can't imagine the stress of it all. I'm SO glad to hear everything has been resolved - finally.

Can I ask you a couple of questions?

I have had a lumbar puncture headache due to a myelogram for 7 weeks now. I've had 2 failed blood patches (the 1st one was done on day 3 and worked immediately, but only lasted for a day, and the 2nd one was done at week 6 and made my symptoms immediately worse).

I have been in touch with 2 neurologists. One suggests a more conservative route of waiting it out, and the other a more aggressive route of doing an LP to test the CSF and locate the leak. I am extremely leary of the more aggressive route, with the possibility of another dural puncture. (I am in the high risk category for spinal headaches - young female with low body mass.) I couldn't imagine starting all of this over again.

I have also had an MRI of the brain with and without contrast, which ruled out any serious complications. It also didn't show serious "sagging brain" or menegial irriation. I have also ruled out a secondary headache with a DHE treatment, etc.

My questions are this:

1. Based on your experience and research, how long would you suggest to wait before doing anything more invasive? Would you suggest trying a 3rd blood patch (possibly flouroscopy-guided)?

2. Do you feel the more invasive tests your husband had done either made his symptoms worse or prolonged his recovery?

3. At what point would you say a surgical repair is necessary?

4. I read that this was his 2nd leak... Did his symptoms from his 1st leak heal very gradually over those 4 months where he was able to be up for longer periods of time? Or was there a significant difference within a few days-week?

This has been quite a difficult experience, as you understand, and I would really appreciate any insight or advice you could share with me. THANK YOU in advance for your time!

Mindi

[mindi]

Ooops! I've never posted one of these before... My questions were in response to Laura's posting of her husband's experience.

[Concerned Gal]

Age: 26
Gender: F
Location: Australia
Treating Facility/Doctor:
Type of Leak (Cranial/Spinal/Both/Unknown): Known Spinal Leak
Spontaneous / Traumatic: Believe Spontaneous
First Sign of Leak: January 2006
First Diagnosed: May 2006
Brief Summary of Tests to date (may or may not include some of the following):

Lumbar Puncture (s) & Opening Pressure if documented - not recorded
Beta II Transferrin

Imaging Studies to date (may or may not include some of the following):

MRI W/WO Contrast - several, last being in July 2008
MRI of spine with myelographic sequencing - July 2008
CT W/WO Contrast - April 2006
MRI Myelogram - No
CT Myelogram / Post Myelogram - August 2006
Radionuclide Cisternogram / Scintogram - May 2006

Has Leak Site been ID'd by Imaging: A big 'puddle' from T1 to T12, most prominent from T4-T8. Multiple cysts in thoracic region.
Did Imaging Show (include any 'results' not listed):

Meningeal Enhancement - Yes, progressively improved with treatment. The last MRI in July 2008 showed no enhancement.
Tonsillar Herniation - Yes, 7mm but as of July 2008 it is "reformed"
Chiari (acquired or other) - Initially Yes but unsure if result of leak. Maternal Aunt diagnosed with Chiari previously and decompressed. MRI in July 2008 indicates Chiari has "resolved" therefore was tonsillar herniation.

Brief Summary of Treatment to date:
Has Treatment Resolved Leak: *sigh* No - still symptomatic
Possible Underlying Conditions Contributing to Leak (AKA - things that make you go "Hmmmmmmm"): Ulcerative Colitis, Thyroid went Hypothyroid at one stage, but fixed itself, On Immunosuppressants since 2002 for Colitis, Remembered did have a massage therapist push my head down on my neck in July 2006 but not sure if this did anything. Multiple cysts viewed through MRI with myelographic sequencing (apparently there in myelogram but not commented on).
Current Symptoms: Stiff/Pain Neck, limited neck mobility, if I look down/head down my head feels like it loses pressure and i get pain, when I lie down the motion of going from up to down makes my neck feel like it is going to snap, some vertigo when rolling over in bed
Current Status: Managing. Functioning in a limited capacity.
Other Info: Proud to have managed a successful pregnancy and delivered a beautiful bub via c-section under general anath. in 2008





Age: 26
Gender: F
Location: Australia
Treating Facility/Doctor:
Type of Leak (Cranial/Spinal/Both/Unknown): Known Spinal Leak
Spontaneous / Traumatic: Believe Spontaneous
First Sign of Leak: January 2006
First Diagnosed: May 2006
Brief Summary of Tests to date (may or may not include some of the following):

Lumbar Puncture (s) & Opening Pressure if documented - not recorded
Beta II Transferrin

Imaging Studies to date (may or may not include some of the following):

MRI W/WO Contrast - several, last being in December 2006
CT W/WO Contrast - April 2006
MRI Myelogram - No
CT Myelogram / Post Myelogram - August 2006
Radionuclide Cisternogram / Scintogram - May 2006

Has Leak Site been ID'd by Imaging: A big 'puddle' from T1 to T12, most prominent from T4-T8
Did Imaging Show (include any 'results' not listed):

Meningeal Enhancement - Yes, everytime. The last MRI showed reduced enhancement from first MRI, but still prominent
Tonsillar Herniation - Yes, 7mm
Chiari (acquired or other) - Yes. Unsure if result of leak. Maternal Aunt diagnosed with Chiari previously and decompressed.

Brief Summary of Treatment to date:
Has Treatment Resolved Leak: *sigh* No
Possible Underlying Conditions Contributing to Leak (AKA - things that make you go "Hmmmmmmm"): Ulcerative Colitis, Thyroid went Hypothyroid at one stage, but fixed itself, On Immunosuppressants since 2002 for Colitis, Remembered did have a massage therapist push my head down on my neck in July 2006 but not sure if this did anything.
Current Symptoms: Stiff/Pain Neck (fairly constant), limited neck mobility, if I look down/head down my head feels like it loses pressure and i get pain, when I lie down the motion of going from up to down makes my neck feel like it is going to snap, some vertigo when rolling over in bed
Current Status: Managing. Functioning in a limited capacity.
Other Info: Proud to have managed a successful pregnancy and delivered a beautiful bub via c-section under general anath. in 2008

[LauraL840]

Filling this out for my husband

Age: 50

Gender: male

Location: NC

Original Treating Facility: University of North Carolina Medical Center, Chapel Hill - Neurology and Spine / Pain Management Clinic

Current Treating Facility and Doctor: Dr. Wouter Schievink - Neurosurgeon, Cedars Sinai Medical Center, Los Angeles, CA

Type of Leak: Traumatic Lumbar

First Sign of Leak: September 3, 2006 following diagnostic lumbar puncture between L4-L5 (documented)

First Diagnosed: April 2007

Brief Summary of Tests to date:

Lumbar puncture 1 - (to check opening pressure and re-test CSF for chronic meningitis, 2 or 3 dry taps before wet tap opening pressure of 15 mm water)
Lumbar puncture 2 - (for first CT myelogram, 17 cm water)
Lumbar puncture 3 - (5/28/2008 for CT & MR Myelograms, 12 cm water)

Brief Summary of Imaging to date (in order):

CT Brain
MRI Brain with & without contrast
Repeat MRI of brain w&w/o contrast
MRI of lumbar spine w&w/o contrast
CT Maxillofacial w&w/o contrast (landmark sinus CT)
Radionuclide Cisternogram (head) and Scintogram (spine)
CT Cervical, Thoracic, and Lumbar Spine Post Myelogram
MRI full spine with myelographic sequencing (no lumbar puncture required)
CT Myelogram/Post Myelogram Cervical, Thoracic, and Lumbar Spine
MR Myelogram with intrathecal Gadolinium Cervical, Thoracic, and Lumbar Spine

** Leak has NEVER been documented by diagnostic imaging and he's had every available diagnostic imaging study done!**

Brief Summary of Treatment to date:

OTC meds (tylenol, ibuprofen, aleve)
RX pain meds (Percoset, Tramadol, Indomethacin, Lyrica, Oxycodone, Ativan, Amitriptyline, Haldol, Toradol, Celebrex)
RX 'headache preventative' (Imipramine,Carbamazepine),
Hospitalized for 8 days to run a course of DHE-45 (dihydroergotamine) to 'break' the pain (didn't do shquat),
and a trial of Solu-Medrol (IV steroids)

EBP #1 9/22/06, no real lasting improvement
EPB #2 4/07, some improvement
EBP #3 5/15/07, total disaster symptoms worsen
EBP #4 6/29/07, 30 sec after, headache is completely gone ... lasted only 4 days

Double High Volume EBP (failure) 5/14/2008, 21 cc's low thoracic and only 3 cc's lumbar - headache reduced, no lasting improvement **this was the first (least invasive) treatment done through Cedars Sinai by Dr. Louy via Dr. Schievink

Epidural FIBRIN (tiseel) Glue Patch #1 9/14/2007, 4 mL's injected at L2-3 ... reduced HA pain initially but no lasting relief ... Leak site is at L4-5 but doctor didn't want to 'go' there as that's where EBP #3 was done and IT was a disaster!
Epidural FIBRIN Patch #2 11/9/07, 4 mL's injected at L4-5 (FINALLY) with considerable difficulty! However he's had the greatest and longest lasting improvement since 9/2006
Epidural FIBRIN Patch #3 5/19/2008, CT-guided 6 mL's injected at L4-5 under moderate anesthesia and with some difficulty. On day two he had 1.5 hours of complete headache resolution.

Direct Surgical Repair 5/29/2008. Dr. Schievink decided that DH's best chance for HA resolution was a direct visualization of L4-5 site to repair. Even though the leak was NEVER imaged by imaging studies, DH got complete HA resolution with the CT-guided fibrin patch which 'confirmed' that the leak was at that location. (Fibrin "spread" is very localized to the area that it's applied, and does not run up and down the epidural space like blood does). Surgical visualization showed a 'blister' like defect on his dura left of midline between L4-5. When anesthesiologist 'increased' ICP, the blister 'seeped' CSF. Defect was covered with muscle which was stitched to dura, packed with fibrin and sewed shut.

First Sign of Secondary Leak: June 29-30/2008 His headache went from distinctly high pressure to low pressure overnight!

Type of Secondary Leak:** Was completely headache free for 3.5 weeks. Then had a slow onset of atypical headaches, which we now know were the beginnings of a high pressure state! **

By the time he was on Diamox to lower the pressure, the leak had already started! We are certain the location is from the pre-op myelogram because he had PRECISION pin-point 'pressure' at that location with the high pressure headache and when the high pressure HA went away and the low pressure HA returned, the pressure sensation in his back was completely gone. Also, the pressure sensation was ORTHOSTATIC ... worse when standing, GONE when laying down. We 'landmarked' and measured this precise location (not knowing the location of the pre-op myelo) and asked Dr. Schievink / Penny if this could be the same location. They confirmed that the pre-op myelo was done at L3 (not sure if L2-3 or L3-4, but judging the landmarking, it was L2-3).

Current Symptoms: Low to moderate level headache, back pain (NON SURGICAL) one inch to 4 inches above his incision. He no longer has surgical back pain.

Current Status: Leaking again ... bed-rest this weekend ... in contact with Dr. Schievink about what to do next and where ... :eek:

Other Info: This is (now) his 3rd leak episode. First one was in July 2003 following an LP for viral meningitis (which he had). We didn't know he had a leak, didn't know anything about PDPH (post dural puncture headache), so we never sought treatment and thought that his healing time was just prolonged due to severity of meningitis/encephalitis. It took 4+/- months for headache to resolve (dura to seal).
Second leak episode was in September of 2006 when he experienced the same meningitis headache (it's one of a kind) with both fever and stiff neck so we went back in ER for LP. This LP was different. He says it felt like it popped when the needle went in. Turns out he had meningitis again, this time bacterial from Rocky Mountain Spotted Fever. Initial thought 3 weeks post LP was PDPH so he had EBP #1 and no one followed up, so we assumed that since it brought no lasting relief that he didn't have a leak and was going to take forever to heal just like last time....

[FloridaGal]

Hi...I'm new here. I think I posted something prior to my first surgery in March. I had the sphenoid sinus on the left patched and packed with abd. fat which seemed to work. I was not sure it had..sinceI was tasting salty drainage and the back of my nose on the leftwas always wet. The surgeon told me it was from inflammation the first month (april) after surgery, I still have it now in August. I was diagnosed last Friday with a hole in the ethmoid sinus on the left and the surgeon asked if I felt any drainage in my noseon the right..as he saw missing bone there also on the recent CT Scan.
He said this would be an ongoing problem for me as all the bones in my skull base are very thin and wearing through. I'm very discouraged as my job staus is in limbo. I missed 5 1/2 months of work the first time they found a leak....as it was when I was in the hospital with Bacterial Meningitis. The doctor (gp) I went to when I noticed the clear fluid dripping from my nose..laughed when I asked if it was CSF fluid and perscribed me nasal spray for an allergy. Well guessI won't spray anything up my nose again, as one dose of the spray..and I came down with bact. menigitis !!!
Sorry so long but I was wondering if anyone else was told this would be an ongoing problem and the thin bones with genetic. Being an RN working in ICU..I am very worried.
I would like hearingfor others with my problem...Thanks for this site.

[FloridaGal]

Age:54
Gender:Female
Type of Leak: Skull Base
First Sign of Leak: Novemeber 2007
First Diagnosed: November 2007 after Bacterial Meningits
Brief Summary of Tests to date:CT's, MRI's, Pleglet Studies, several scopes up my nose
Brief Summary of Treatment to date:Mega Antibiotics,Sphenoid surgery patch and packing with abd. fat. To have surgery again on new leaks August 8th 2008
Current Symptoms:leaking left nostril and back of throat..salty tasting, worse with bending, excercising, riding in the car
Current Status: Surgery August 8th again
Other info:Surgeon told me it would be an ongoing proble ashe sees several bones in the skull base that are thin

[Torontonian]

Hi, i'm new here. Hope i'm posting this to the leaker roll call.

Age: 47
Gender: Male
Type of Leak: unknown
First Sign of Leak: 5 years ago
First Diagnosed: undiagnosed
Brief Summary of Tests to date: CT, MRI, sleep study
Brief Summary of Treatment to date: nothing; doctors have been clueless
Current Symptoms: Complete opposite of everyone else here! My headaches begin whenever, and only when, I lie down. I believe they’re called “paradoxical postural headaches.” I wake up 3 or 4 times a night with severe back-of-head pressure. Makes it impossible to get a good night’s sleep. I’ve been desperate for two years. In the morning it feels like I’ve been clubbed in the back of the head. Starts to dissipate as soon as I can get my body sitting up. Headaches completely subside after half an hour of being upright and having coffee.
Current Status: My neurologist has been clueless and hasn’t responded since I sent him a couple of insightful papers on CSF leak from Mayo Clinic and Cedars-Sinai. Scheduled to see a neurosurgeon in a couple of weeks.
Other info: I would LOVE to find a doctor like Mokri at Mayo Clinic who is familiar with my paradoxical form of CSF-leak headache. But I live in Toronto and the medical system here is frighteningly conservative.

[Chanson]

Age: 38 (almost 39.....)
Gender: Female
Type of Leak: Unsure, but think lower spine - they didn't find it....
First Sign of Leak: Ringing in my ears & music out of tune, March '07. That went away after a few weeks & then the headaches started.
First Diagnosed: Not really "diagnosed" yet.
Brief Summary of Tests to date: MRI found Chiari & some evidence of "low pressure situation". Had a myelogram, but they missed the thoracic area in the CT - nothing found.
Brief Summary of Treatment to date: Had two blood patches, the first one worked for the 3-4 days it takes to dissipate. Second didn't work. Tried bedrest a few days, and it lessened the symptoms some.
Current Symptoms: Mild headaches on & off during the day, neck stiffness. Caffeine is my lifeline!!!!
Current Status: Still going....
Geographical Data: Now living in Maine. Anybody know of a good Neurologist here on the East coast?
Oddities experienced which may or may not be leak related: Post-nasal drainage!!! What is with that???
_________

[rhondai91]

Age: 38
Gender: Female
Type of Leak: From L4-L5 Surgery
First Sign of Leak: March 2008 when stitches were removed from a herniated disc surgery
Brief Summary of Tests to date: blood work, 4 MRIs, Failed Blood Patch
Brief Summary of Treatment to date: Bed Rest; Surgery to clean our area and to put in a lumbar drain for 6 days in ICU; back in hospital for Aseptic Meningitis from the material they put on my Dura to stop leak after 2nd surgery; multiple medication all of which I had a bad reaction to until the Fentanyl Patch I am currently on.
Current Symptoms: Back pain, stiff neck after being up for a while, pain down the back of my legs, upset stomach, lack of interest in food, not realizing how much pain I am actually in until my hands start shaking.
Current Status: Went to new NS last month who did the work ups again....blood tests, MRI, etc. He said the volume in my CSF Pocket looked like it was decreasing, but he wants to do another MRI this month to make sure. He told me to move around as much as I feel like doing, so I have been, but now the pocket is bigger - so I'm back in bed 90% of the time.
Geographical Data: Bryan, Texas - right between Dallas and Houston
Oddities experienced which may or may not be leak related: Dizziness, Floating Feeling, pain in my L-spine when I sit for to long, I just don't feel right, maybe I'm just getting sick of being in this house so much.
Other ?: Trying not to bring my family down when I'm down. I have 2 kids at home and they are always asking me if I'm OK....I just don't want to unload on them like I do my husband, so I tell them I'm fine. It feels like all I do is complain to my husband, so I've even stopped telling him. It's just to much to download on him all the time.

[mindi]

Age: 32

Gender: Female

Location: Washington state

Treating Facility/Doctor: Local neurologist & anasthesiologist; Sent records to Dr. Schievink, will speak with him next week

Type of Leak (Cranial/Spinal/Both/Unknown): Spinal

Spontaneous / Traumatic: Traumatic

First Sign of Leak: May 19th, 2008 -I had a myelogram done for diagnostic purposes prior to (a scheduled) back surgery, and that night got a sudden thunderclap headache which progressed to severe and debilitating by the next day.

First Diagnosed: May 22nd, 2008 - 3 days after myelogram when I went to have 1st blood patch

Brief Summary of Tests to date: MRI w/wo Contrast

Has Leak Site been ID'd by Imaging: No

Did Imaging Show Meningeal Enhancement/Sagging Brain? - No

Brief Summary of Treatment to date:

1st Blood Patch - at 3 days (worked immediately, headache completely gone for 1 day before coming back with just as much intensity)

2nd Blood Patch - at 6 weeks (failed - actually immediately exhasperated my symptoms, i.e. headache, nausea)

3rd Blood Patch - at 3 months (failed - no change in symptoms)

Also:
-IV fluids for 3 days (at week 6)
-4-day DHE treatment in hospital (at week 7)
-steroid pack (at week 8)
-caffeine
-lots of water/gatorade, healthy foods, protein, vitamins, even trying homeopathic medicine, just in case any of this is going to help heal my dura

Has Treatment Resolved Leak: No

Possible Underlying Conditions Contributing to Leak (AKA - things that make you
go "Hmmmmmmm"): N/A

Current Symptoms: Headache (not as severe as during 1st month), nausea/dizziness/sick feeling, some arm tingling (has come and gone; not as much lately), neck stiffness/ache

Current Status: Have been on bed rest for 3 months, unable to function due to head pain, nausea/dizziness/sick feeling

Other Info: While my headache is orthostatic in nature, my pain (and nausea/sick feeling) never goes away when I lie down. It definitely increases when I'm up and decreases while I'm down, but it never goes away.

[GaGal]

AGE: 49

GENDER: F

GEOGRAPHICAL LOCATION: Georgia

TYPE OF LEAK: Cranial

FIRST SIGN OF LEAK: 04/09/07 after sinus surgery to remove core of bone that had not healed from sinus surgery 03/06. I knew something was different. It is a headach like no other.

FIRST DIAGNOSIS: 04/15/07 when surgeon returned to his office. His partners didn't catch it while he was out.

BRIEF SUMMARY OF TESTS: Numerous LP's testing for menigitis, CTs and four cisternograms

BRIEF SUMMARY OF TREATMENT: Numerous attempts to place graph on dura by original surgeon then once by another which actually took care of the sinus disease but didn't correct the leak. Another attempt was made 02/18/08 in SC

CURRENT SYMPTOMS: Constant throbbin headache, popping in left ear, clear drainage from left nasal, sensitive to high pitched tones, neck pain, top of my head is tender to the touch, head has burning sensation, memory loss, blurry vision

CURRENT STATUS: Waiting on neurosurgeon to schedule craniotomy. It seems the new doctors don't agree. One doesn't see the scientific evidence of a leak while the other one does. I want this "headache from hell" gone. I want my life back. I want to go back to work. I have to stay out of the public as much as possible due to the threat of infection.

OTHER: I'm thankful that my neurosurgeon says the craniotomy is a "sure fix". This website is great! There are so few of us around so I gain comfort in knowing that others are going through this same frustrating ordeal as me. I'm just sorry you have to suffer.

[bsih]

I am a new member.....

Age: 54
Gender: F
Type of Leak: Rhinorrhea from Surgical malpractice
First Sign of Leak: Immediate post surgery
First Diagnosed: 7-05
Brief Summary of Tests to date: CTs, MRIs, Lps, Cisternogram, Myelogram, nasal scopes
Brief Summary of Treatment to date: 4 Craniotomies (one to remove meningioma and 3 to attempt leak repair), VP shunt, various meds
Current Symptoms: Leaking, headache, tinnitus, vertigo, sleep disorder
Current Status: Bifrontal craniotomy pending
Other info:

I am seeking advice to deal with the various symptoms. I leak like clockwork every 2-3 hours. I am having particular problems with the headache (having to lie flat every 3 hours while maintaining a work schedule), sleep disorders (I have tried everything and need ideas) and the tinnitus.

I am in the Orange County, CA area. Any advice you could render would be very appreciated!

Thanks,

Barbara

[spots]

Age: 38

Gender: female

Type of leak: spontaneous spinal

First sign: chronic daily headache started early 2006, didn't realize orthostatic nature of headache for until late 2007. HA starts in back of neck, base of skull then engulfs entire head. Moderate burning pain that gets worse as day goes by. Tired, sore eyes, pain across cheekbones and jaw line, burning in back of neck and between shoulder blades. All but neck pain goes away after lying down, some relief instantly after lying down, HA gone after 10-15 minutes lying down.

First diagnosed: treated for migraines until January 2008, new neurologist suspected dural leak, but did basically nothing about it. 8/13/08 leak site confirmed by Dr Schievink by CT myelogram.

Tests to date: brain MRI w/wo contrast x 2 (normal), skull base ct (normal), cervical spine MRI (normal), lumbar spine MRI (normal), MRI myelogram (small cyst on thoracic spine), CT myelogram (leak at T8-T9).

Treatment to date: Everything you can imagine for migraines! High volume double blood patch by Dr Louy at Cedars Sinai (8/14/08)

Current status: HA is much improved, no neck pain, just mild numb feeling in head when upright. Staying down as much as possible at this point, only up to bathroom. Following post patch guidelines as well as I can, keeping fingers (and toes) crossed!

Other info: If anyone out there has an orthostatic headache and your doctors say it can't be a csf leak without known trauma, surgery, lp etc., keep pushing. I truly think all my doctors thought I was a crazy person, but I know myself. I did sometimes stop and ask myself if I was somehow imagining this, but I knew I wasn't. I am a nurse and the daughter of a doctor, I have always had a huge amount of faith in the medical profession and found it very difficult to second guess my doctors. But because I kept looking and being persistent we found the cause of my pain. Now hopefully we will cure it. But if you are going through anything like this be strong and keep looking, someone out there will help you. I can't say enough nice things about the folks at Cedars Sinai. Dr Schievink and his team are wonderful.

[mamsbtgc]

Hello,

I am a new leaker

Age 46

Type of leak: Tramatic

First sign of leak:: extreme headache (I hate to call it that, as you all know that it is soooo much more than a "headache") nausea and vomiting 4 days post surgery for an interthegal pain pump. pain management doctor continued to tell me I must have the "flu". Then it was a reaction to the morphin in my pump, etc, ect. My primary kept searching for the answer but kept comming back to the timing of the surgery, so we were both convinced that it had to be related. Finaly after 3 months I was diagnosed 8/21/08 after a CT Myelogram.

The catheter from my pump is in my lumbar region, but my leak is in my cervical area. (hummm). Doc can't figure out how that happened. He says. Anyway, I know that I have a large leak, left side, in my neck and it's not the only one, but I haven't gotten a straight answer as to how many and where.

I did have a 10cc blood patch done 8/22/08. What a scary process! Doctor said that he and only done the proceedure in the lumbar before. During the proceedure they kept hitting a nerve which my my arms and legs tingle, burn and jump. I felt like a dissected frog hooked up to a battery. Also, during the procedure, my right nostril started leaking like a faucet. Doctor said we would know within 30 minutes if the proceedure worked. I did feel somewhat better that day, but the next day, all of the symptoms were back with a vengance and now I have the intermittant drip, drip, just from the right nostril. Doctor now wants me to take cold medicine.

Since I live 3 hours from the clinic, I asked if I should plan to stay the night after the blood patch or if there were any restrictions. I was told to go ahead and make the drive home and "take it easy". They never recommended bed rest.

To make a long story short, now my FMLA is gone and I either have to go back to work with headache, vomiting and nausea or loose my job after 9 years.

Doctor won't release my until we get a better idea about the blood patch outcome, and/or consult with the neurosurgen.

Other info: Interthecal pain pump for lower back and leg pain from nerve damage due to tarlov cycsts.

I would especially love to hear from anyone in the SW Wyoming/Salt Lake area.

P.S.
My husband is contacting attorneys as I type.

Thanks
Melanie

[mot]

Age:62
Gender:M
Type of Leak:Spinal?
First Sign of Leak:?
First Diagnosed:July 1-2008
Brief Summary of Tests to date:MRI brain MRI C-spine, MRI Thoracic and Lumbar Spine All w/contrast
Brief Summary of Treatment to date:1 Blood Patch
Current Symptoms:low grade headache, neck pain, loud tinnitus, occasional nausea
Current Status:Waiting for 2nd BP
Other info:
Otherwise healthy 40 year + headache sufferer
My MRI's show decent of the brain and tonsils,
as well as diffuse pachymeningeal gadolinium enhancement.
I have recent studies with contrast of the brain, cervical spine, thoracic and lumbar regions.
Two studies of the lumbar and sporadic spine (MR) at the Mayo show evidence of gadolinium enhancement at T10-T11
I am told, but no fluid..
My symptoms are chronic daily headaches/neck aches, tinnitus, and nausea, as well as trigeminal pain. I have had this particular headache in varying degrees for 4 months. It is really not positional, although if I lie down for a number of hours it appears to lessen.

__________________

[lisalailey]

Thanks to vini for recommending this site, Huge thankyou! im not alone.:o
I live in the South West UK
Age 35
Gender Female
Type of leak Spontaneous
First sign of leak May 2007
First diagnosed sort of Setember 2007 (really their best guess)
Brief summary of tests MRI
Treatment so far 1 blood patch unsuccessful
Current symptoms Wake up every day with headache some days not so bad
but lately struggling with everyday things.
current status. totally hacked off, help from the medical profession is very slow, but reading about everyone else here and their symptoms at least has confirmed to me yes I am a leaker for sure.
Other info. I also have a venous malformation which I was born with had bit of a nasty operation a couple of years ago which im sure has helped get me the way I am now, but this condition to is not common so help for this has been difficult, I am also very cautious who I let near me the last op I had, has left me not only with a knackered back but these lovely headaches too, I have 2 lovely kids one 4 yr old and a 7 yr old, and they desperately just want their mum without this headache all the time. Ive tried acupuncture, healers, crystals and currently I live on 6-8 paracetamol a day so I can at least function. anyone got any other ideas on medication my stomach is now giving me grief after taking this for well over a year. they did try me on betablockers & prozac not on these now thankgoodness.

[vini]

hello Lisa a big welcome *hug please post any questions down on the board your first issue is pain meds I tend lay down but thats not always possible,I am sure the good folks here will be able to help it seems getting to see the right doctor is important Laura *goldstar posted some uk docs based in Plymouth, which is in your neck of the woods many of the members are in the USA so its good to have you here as we can learn and help from each other with the UK medical system, the post for the docs is a couple of pages back entitled for vini and other uk leakers

Vini :confused:

[Robbysmom5]

(posted by Jeanne, Robby's mom, Sep 13)
Age:15
Gender:M
Type of Leak: Traumatic Spinal
First Sign of Leak:July 3, 2008
First Diagnosed:July 4, 2008
Brief Summary of Tests to date: MRI's whole back, CT, MRI & MRA brain
Brief Summary of Treatment to date:1 High-volume EBP (Aug 21, 2008)
Current Symptoms: positional headache, ear pressure, back pain, some hand and feet pain
Current Status: Hoping it is healing, waiting for appt w/ new neurologist
Other conditions(things that make you go "Hmmm"):
asthma, lumbar scheuermanns disease (kyphosis), scoliosis, migraines, motor tics, blood sugar fluctuation, heart murmur, abnormal RBC, toe-walk, spells of cold pain in hands
Other info:
His 5th epidural steroid injection (Ominpaque, DepoMedrol) accidentally tore dura, & most likely went intrathecal; Acute chemical meningitis followed - with 2 LPs performed during the 2-week hospital stay; Headache since; EBP stopped HA for 30 hours

[Izzybee]

I am filling this out for my husband. He has been dealing with chronic headaches and neck/back pain on and off for the past 7 years. We didn’t know that his symptoms could be CSF leak-related until he stumbled upon this forum recently.

Age: 32

Gender: Male

Location: Rock Hill, SC (Charlotte, NC metro area)

Treating Facility/Doctor: Dr. Sandra McMahon (GP), Dr. Mark Abrams (ENT), Dr. Allen Ryder-Cook (Neurologist)

Type of Leak: Unknown

First Sign of Leak:


August 2001: had headaches and neck pain for 6+ months following bout of viral meningitis (had a bad LP at that time)

February 2007: had another LP for meningitis symptoms and had orthostatic headaches in the following weeks (did not test positive for meningitis that time)

October 2007 – January 2008: again suffered from persistent headaches and neck pain along with chronic sinus and ear infections

August 2008 – present: orthostatic headaches and neck/back pain are back and seem worse this time, possibly due to strenuous activity in yard trimming trees


First Diagnosed: Not yet diagnosed. ENT agrees that it may be a CSF leak and scheduled him for MRI this week.

Brief Summary of Tests to date:

Lumbar Puncture, August 2001
Lumbar Puncture, February 2007 (not sure of opening pressure)


Imaging Studies to date:


MRI W/WO Contrast
CT W/WO Contrast


Has Leak Site been ID'd by Imaging: No

Did Imaging Show (include any 'results' not listed): MRI of brain and internal auditory canal (with and without contrast) showed no abnormalities. Does this rule out CSF leak, or does he need more testing?

Brief Summary of Treatment to date: Has not received treatment specific to CSF leak, only treatment for symptoms. He has been on several rounds of antibiotics for sinus and ear infections. He has been on three rounds of Prednisone this year, and has actually felt better while taking it. But he can’t keep taking it b/c it is a steroid. His headaches seem to feel better (though not resolved) with caffeine and ibuprofen. But he had terribly scary heart palpitations while on Prednisone and ibuprofen at the same time.

Has Treatment Resolved Leak: No

Current Symptoms: The past two months have been pretty bad for him. Here are the main symptoms he has experienced recently…


orthostatic headaches (he feels better when lying down), has headaches 90% of days, 50% of the time (caffeine and ibuprofen help), but the past few weeks the headaches have been almost non-stop
neck pain (hurts at base of neck, lots of popping of the neck)
back pain
feeling of fullness in right ear (he usually hears popping in the ear just before headache begins)
tinnitus (not constant, but more than occasional)
occasional watery fluid drips in nose and/or throat (we always thought it was nasal congestion, but perhaps it is a CSF leak??)
eye pain and strain (has had severely dry eyes ever since Lasik)
facial pain (always on left side of face)
occasional numbness/tingling in arms/hands
occasional irregular heartbeat/palpitations (was a lot worse when on prednisone and taking ibuprofen)
several bouts of vertigo recently (most have been after he has been lying down, or when getting up to use the bathroom in the middle of the night)

Current Status: He can usually make it through the work day (sitting behind a computer), but has had to work from home some recently due to the severity of his headaches. Although his work sometimes takes his mind off the pain, he does have difficulty concentrating, and face-to-face meetings are especially difficult for him.

Possible Underlying Conditions Contributing to Leak (AKA - things that make you go "Hmmmmmmm"): Was diagnosed with IBS, chronic sinusitis, allergies to dust/mold, and has chronic ear infections. This year he went on an elimination diet to see if food allergies were causing his chronic sinus and ear infections and/or IBS, and we have eliminated spicy foods (contributed to IBS) and wheat gluten (exacerbated his headaches) from his diet. Perhaps these are all symptoms rather than underlying conditions contributing to leak??

Other Info: He was involved in a car accident in 2000, and received chiropractic treatment for neck/back pain. He was diagnosed with viral meningitis in August of 2001. The resident physician at the ER had never administered a LP before and poked him 4-5 times. The attending physician finally administered the lumbar puncture, but must have hit a nerve. He heard a pop and felt a shooting pain go through his leg and automatically kicked (while he was supposed to lie completely still). He had headaches and neck/back pain for the next 6+ months. At the time we thought it was recurring meningitis symptoms, and weren’t aware of post dural puncture headaches (sounds a little like Laura’s husband’s story!) Following the episode in 2001 he had a couple of mostly good years health-wise, but things have been more bad than good in the past two years. In February of 2007 he felt meningitis-like symptoms again. He had another LP, and this time his white blood cell count was not elevated enough for him to test positive for viral meningitis. They diagnosed him with meningismus (meningitis symptoms without the meningitis infection). He had severe headaches for the next few weeks. He seems to catch every cold and virus that comes around, so we wonder if there is some sort of immune system problem as well. Usually, when the rest of us are recovering from our cold/virus and we assume Mike should be getting better as well, he ends up in bed for several days with headache and neck/back pain. Last year’s flu season was particularly bad for him, it seemed that he was constantly sick, either with cold/virus or with headaches/neck pain. This spring/summer was pretty good for him until about two months ago when the headaches and neck pain started up again. We suspect that this most recent “episode” (as we tend to call it) began after he was working in the yard trimming trees.

[1Lily]

Age:43
Gender:F
Type of Leak: cranial
First Sign of Leak:Shortly after MVD surgery on July 14, 2008
First Diagnosed: September 2008
Brief Summary of Tests to date: CT, no contrast
Brief Summary of Treatment to date:LP to measure fluid pressure (15)
Current Symptoms: some trigeminal pain, pain at leak site from expansion of fluids, bubbling in ear from pinhole leak in ear canal, vertigo, nausea
Current Status: Slated for reparative surgery. No date set.
Other conditions(things that make you go "Hmmm"):Trigeminal Neuralgia, migraines (none since MVD surgery!)
Other info: The MVD surgery was to cure my trigeminal Neuralgia. I suffer both type 1 (lightning bolt pain) , and type 2, (long duration nerve pain). The surgery stopped the type 1 pain completely, still having problems with type 2 pain (was not guaranteed by surgeon to be removed).
Shortly after my first surgery, I began to leak a pinkish fluid through my sutures. This started after I was hospitalized with aseptic meningitis, released, then rehospitalized again for a bout of strong steroids. 2 Neurosurgeons felt that it wasn't CSF, but one now admits it probably was.
I was brought back in for wound revision surgery. They used a different stitch. This one held, I had no fluid leak. A few weeks afterward, CSF began to build up underneath the skin on my skull, at the surgery site, right behind the ear. It has been that way for weeks now. I then developed a pinhole leak in my ear canal, and fliud bubbles out, and air gets in. The doctor dismissed it as an issue, looked at my CT, and said that I had no fluid in my mastoid. He called the next day after radiologists DID confirm fluid in the mastoid, and offered to do a second revision surgery, this one more involved, since this is the second time around. A fat patch will be done, and he will be remiving and replacing the wire mesh over my dura.

[seamatty]

Hi everyone - I'm new here...Had an LP Sept 5th...what a mistake...since then I have had a headache which started out AWFUL and now still is so annoying...It is better in the morning get's worse as the day goes on. The main pain is pressure at the back of my head and neck area. if I move my head it feels like there is no "padding" around it - and it kills...Laying down relieves it - I had a blood patch - didn't work much at all and within a day I was back to square 1...plus had a strange reaction to it - low grade fever and chills which sent me back to the ER and eventually it went away (though I still don't feel quite right a couple weeks later)...But now my Doc says forgo the 2nd blood patch and attempt conservative treatment...what's that - JUst time? I m not doing caffeine as I am not very tolerant of it - meds make me feel sick so I'm just waiting it out...I was wondering if anybody here has any encouraging words as I am going insane! I used to be such a high energy exuberant personality but now I'm up for a few hours and back down...I HATE IT!!! Do these go away? Anyone have any good reports or improvement reports - cause at the moment I want to strangle the RAdiologist who did this :)

Thanks

Matty

[katybug]

Age:50

Gender:female

Type of Leak: Spontaneous, C-6

First Sign of Leak: June 2006

First Diagnosed: April 2007

Brief Summary of Tests to date: Numerous MRIs (Brain & Cervical), Numerous Myelograms, Multiple Lumbar Punctures, Cisternogram, MRA

Brief Summary of Treatment to date: Surgical repair Mayo Clinic, Jacksonville, Florida December 2007, Dr. Robert Wharen

Current Symptoms: Resolved

Current Status: Better than ever!

Other info: I'm glad to help in any way possible.

[djbrickey]

Age:51
Gender:F
Type of Leak: ??
First Sign of Leak:September 2007
First Diagnosed: waiting for confirmation of diagnosis
Brief Summary of Tests to date: 3 MRI, 2 CT Scan, 1 messed up cisternogram
Brief Summary of Treatment to date:all the standards meds with 3 different muscle relaxers and 2 botox treatments.
Current Status: Waiting for repeat of cisternogram
Other conditions(things that make you go "Hmmm"):tingling and burning in arms, nervousnous, vibration from inside out, blurring vision and daily headache.
Other info: doctors here in Jackson, MS do not have a clue. I am going to supposely one of the best neurologist in the city.

[vini]

hi all thought I would post why I came to be here, I am seeking answers for my self and hope to help others on the way,I am still trying to get diagnosed but I am getting there

I am a traumatic crainial leaker

I have had a head injury on the 19th of December last year were I got fractures to my, frontal / temporal / maxilla/ and orbital floor bones on the right side of my head I have no sensation in the right side of bottom eye lid/ nose top lip/ teeth and gum's also double vision in my right eye I came to in the waiting area of a hospital not knowing were I was or what had happen I could not see my phone so asked the receptionist to call my partner she said the police had phoned some three hours earlier and said I was in a bad way but was ok this was 3am my partner came out with my 7 year old when they arrived I was finally seen by a doctor I could not tell my left from right when xrayed I was given a letter to take to another hospital some 30 miles away ( the queen Victoria East Grinstead uk famous for its work WW2 fighter pilots burns victims known as the gini pig club) there I was scanned told the extent of my injury's they said they could not operate until the day after boxing day 7 days away they gave me some anti bots and pain killers and told me not to blow my nose ( No head injury sheet) a couple of days later I got a cough and cold every time I coughed I had clear fluid run out my nose (not mucus) from the cold about an egg cup full a day salty and thin clear liquid I now know was CSF leaking , I returned to the hospital for the op to fit 3 metal plates to the fractured bones I got into bed and told the nurse that I was worried about this stuff coming out my nose, she said can you make it come out so I coughed and it trickled out . she went and got the surgeon who done some neurological tests he said he could not operate and sent me for a brain scan I was to return for the op on new years eve which I did and the op was done the staff at the hospital were all very nice , but I am left with crushing daily head aches, short term memory loss, find it hard to think, low mood, and a salty taste at the back of my throat could this be the CSF leaking I have had to give up work as I could not cope with my job any more, I have an appointment on the 18 September with a neurologist , Can CSF leak internally ? will my symptoms get better if they can fix it ?
ps I was a victim of an unprovoked attack at a railway station but still have no memory of that night
kind regards Vini

[bonniemaggie]

Age: 54
Gender: female
Type of Leak: multiple spinal
First Sign of Leak: ringing ears and occipital headache
First Diagnosed: 3/06

Brief Summary of Tests to date: several MRIs, 3 EBP, Cisternogram, sinus pledgette test, 2 rounds of CT directed fluoroscopy

Brief Summary of Treatment to date:
started this journey at UNC-Chapel Hill, where a very alert MRI tech identified pachymeningeal enhancement as the hallmark of ICH. No one at UNC saw leaks on MRIs or cisternograms, so they sent me over to Linda Gray at Duke who does CT directed fluoroscopy with targeted BP. Dr. Gray found 10 small lumbar/thoracic leaks the first time, and patched them. Two months later, she did 15 more. Neither round of BP solved the problem.

Current Symptoms: on short-term disability. HA when I'm up for more than two hours, incapacitating at four hours. Cannot bend forward or strain. Have stiff neck,tinnitus,horizontal diplopia,nausea, tingling in the arms,fatigue & loss of mental acuity

Current Status:This week: went to Mayo Jacksonville. Neurologist there saw leaks that were missed on UNC films. Will be having another MRI, then seeing Dr. Wharen.

Other info:I've been lurking here for some time. This forum helped me avoid drs in Gainesville (where I live now) and go straight to Mayo. How do you all have the upright time to read this forum? thank you for everything, especially all the article links.

[blonde_recluse]

Hello Everyone!
I don't know where to start. I suffered two back to back head traumas about two years ago and my doctor and I believe the impacts caused my leak(s). I was stumbling around with a serious concussion and it took months to get my normal skills back. I suffered memory loss, confusion, migraines, slurred speech, inability to find words for objects, etc. I recently became sick and I had to go to the ER for a lumbar puncture to check for meningitis. When I went to my doctor to discuss test results (no meningitis) I mentioned my nasal discharge. He then asked the series of questions that follows the suspected diagnoses- How long have you exp. this discharge? Does it only come out of one side? Do you notice HA improvement upon lying down? He then told me he suspected a CSF leak. I was totally freaked out. "So you're telling me my CSF fluid is coming out of my nose?" Yeah. I came home and immediately got online for more information. That's when I found this site. I LOVE IT! I feel a lot less weird now that I know I'm not the only one. So much info for such a confused person!! I'm still waiting on my first lab sample to be sent back. I'm not expecting much out of it. I didn't get much in the cup :) I am hopeful. I'm sick of living in constant pain. Hopefully if i use the advice I won't have to take such a long journey!! thank you all
Age:28
Gender:F
Type of Leak: Rhinorrhea, Otorrhea
First Sign of Leak:two years ago after head trauma
First Diagnosed: one month ago
Brief Summary of Tests to date: nasal discharge sample given two weeks ago, waiting on results. Don't expect much. (The leak was found after I was subjected to my second series of spinal taps to look for meningitis. I though I had post-nasal drip!! boy was I wrong..)
Brief Summary of Treatment to date: my doctor, not knowing much about the situation other than the ability to identify, crammed some pain meds down my throat to no avail
Current Symptoms:headache, neck pain, dizziness, fatigue, etc
Current Status:leaking out of my nose, enormous headache
Other info: I've had all of these symptoms for a little over two long years and I'm glad i'm getting to the root of the problems. I've read lots of stories of all of your long and grueling trips to wellness. keep up the good work! I thought I was the only one.. thank you

[bstone]

Age:28
Gender:Male
Type of Leak:Spontaneous leaking
First Sign of Leak:April 2007
First Diagnosed:Feb 2008
Brief Summary of Tests to date:MRI, MRI w/contrast, CSF flow study, CT Myelogram
Brief Summary of Treatment to date:Approaching 40 total epidural blood patches.
Current Symptoms:Pain in/behind eyes (sharp, stabbing), subjective feeling of vertigo
Current Status:Headed back to Duke for 4th round of EBPs. I feel better after each series of EBPs, but I keep popping new holes.
Other info: Being treated by Dr Gray at Duke Univ Medical Center

[LauraL840]

Filling this out for my husband

Updated/latest information in blue

Age: 50

Gender: male

Location: NC

Original Treating Facility: University of North Carolina Medical Center, Chapel Hill - Neurology and Spine / Pain Management Clinic

Current Treating Facility and Doctor: Dr. Wouter Schievink - Neurosurgeon, Cedars Sinai Medical Center, Los Angeles, CA

Other Treating Facility and Doctor: Dr. Linda Gray-Leith - Neuroradiologist Duke University Medical Center, Durham, NC

Type of Leak: Traumatic Lumbar

First Sign of Leak: September 3, 2006 following diagnostic lumbar puncture between L4-L5 (documented)

First Diagnosed: April 2007

Brief Summary of Tests to date:


Lumbar puncture 1 - (re-test CSF for chronic meningitis, 2 or 3 dry taps before wet tap opening pressure of 15 mm water)
Lumbar puncture 2 - (for first CT myelogram, 17 cm water)
Lumbar puncture 3 - (5/28/2008 for CT & MR Myelograms, 12 cm water)


Brief Summary of Imaging to date (in order):


CT Brain
MRI Brain with & without contrast
Repeat MRI of brain w&w/o contrast
MRI of lumbar spine w&w/o contrast
CT Maxillofacial w&w/o contrast (landmark sinus CT)
Radionuclide Cisternogram (head) and Scintogram (spine)
CT Cervical, Thoracic, and Lumbar Spine Post Myelogram
MRI full spine with myelographic sequencing (no lumbar puncture required)
CT Myelogram/Post Myelogram Cervical, Thoracic, and Lumbar Spine
MR Myelogram with intrathecal Gadolinium Cervical, Thoracic, and Lumbar Spine
MRI lumbar spine with myelographic sequencing (no LP required)


** Leak has NEVER been documented by diagnostic imaging and he's had every available diagnostic imaging study done!**

Brief Summary of Treatment to date:

OTC meds (tylenol, ibuprofen, aleve)
RX pain meds (Percoset, Tramadol, Indomethacin, Lyrica, Oxycodone, Ativan, Amitriptyline, Haldol, Toradol, Celebrex)
RX 'headache preventative' (Imipramine,Carbamazepine),
Hospitalized for 8 days to run a course of DHE-45 (dihydroergotamine) to 'break' the pain (didn't do shquat),
and a trial of Solu-Medrol (IV steroids)


EBP #1 9/22/06, no real lasting improvement
EPB #2 4/07, some improvement
EBP #3 5/15/07, total disaster symptoms worsen
EBP #4 6/29/07, 30 sec after, headache is completely gone ... lasted only 4 days



Double High Volume EBP (failure) 5/14/2008, 21 cc's low thoracic and only 3 cc's lumbar - headache reduced, no lasting improvement **this was the first (least invasive) treatment done through Cedars Sinai by Dr. Louy via Dr. Schievink


Epidural FIBRIN (tiseel) Glue Patch #1 9/14/2007, 4 mL's injected at L2-3 ... reduced HA pain initially but no lasting relief ... Leak site is at L4-5 but doctor didn't want to 'go' there as that's where EBP #3 was done and IT was a disaster!
Epidural FIBRIN Patch #2 11/9/07, 4 mL's injected at L4-5 (FINALLY) with considerable difficulty! However he's had the greatest and longest lasting improvement since 9/2006
Epidural FIBRIN Patch #3 5/19/2008, CT-guided 6 mL's injected at L4-5 under moderate anesthesia and with some difficulty. On day two he had 1.5 hours of complete headache resolution.



Direct Surgical Repair 5/29/2008. Dr. Schievink decided that DH's best chance for HA resolution was a direct visualization of L4-5 site to repair. Even though the leak was NEVER imaged by imaging studies, DH got complete HA resolution with the CT-guided fibrin patch which 'confirmed' that the leak was at that location. (Fibrin "spread" is very localized to the area that it's applied, and does not run up and down the epidural space like blood does). Surgical visualization showed a 'blister' like defect on his dura left of midline between L4-5. When anesthesiologist 'increased' ICP, the blister 'seeped' CSF. Defect was covered with muscle which was stitched to dura, packed with fibrin and sewed shut.


First Sign of Secondary Leak:
** Was completely headache free for 3.5 weeks. Then had a slow onset of atypical headaches, which we now know were the beginnings of a high pressure state! **
June 29-30/2008 His headache went from distinctly high pressure to low pressure overnight!

Type of Secondary Leak:
Traumatic Lumbar

Location of Secondary Leak:
L3. DH is able to pinpoint precisely where his current leak is because of a distinct pressure sensation in his lower spine when his HA is in high pressure. This pressure sensation goes away when the HA transitions to low pressure and is replaced with an achy-pain sensation. This location corresponds to the LP done in May 2008 for his pre-surgical myelogram.

Progression of Symptoms from July 2008 until now (January 2009):
Initially this leak site would close when he stayed down for a while and open when he was standing. Over a 2.5 month time-frame the leak seemed to be healing/staying closed more frequently, however when it was closed DH went immediately from low pressure to high pressure and was unable to adequately control it with Diamox/Lasix. The high pressure would ultimately re-open the site every time! We contacted Dr. Schievink who arranged for DH to be treated by Dr. Linda Gray-Leith (Neuroradiologist) @ Duke. He was treated successfully (details under 'Treatment of Secondary Leak') and placed on Topamax to help better control his high pressure HA. The leak stayed sealed for 7 weeks and reopened when DH picked up some trash and no longer seals up under any conditions (complete bedrest for several days and abdominal binder).

Treatment of Secondary Leak:
Dynamic CT-guided Epidural Blood Patch 10/14/2008 10 cc's applied directly over L3-L4 - Headache transitioned from low pressure to high pressure over next several days and was controlled (to a limited extent) with Topamax. DH did not have the myelogram (requiring another LP) portion of this, but he did have a 'live' CT guided blood patch (also called an empiric blood patch).
Side Note:
The Dynamic CT imaging will likely become the 'cutting edge' tool in finding and repairing SPINAL LEVEL CSF leaks. With a Dynamic CT Myelogram, the patient is 'run through' CT machine with marker tape (feducials) placed to landmark external locations as they relate to internal locations. Then the patient is placed prone (face down) and LP access is gained to check pressure and inject contrast as needed. Then the patient is placed back into the CT and imaging begins AS CONTRAST IS INJECTED. This way the leaks are pinpointed 'live' and can be sealed via blood patch (or fibrin) as they show up on imaging. Also, if a patient is a slow or intermittent leaker, the LP access would allow a bolus of Elliot's B to increase pressure and force a leak (inject contrast, bolus Elliot's B, WHILE imaging to see where contrast exits dura).

Current Symptoms: VERY VERY Orthostatic Headache! Cannot be upright and active for long without nausea and dizziness. Average daily pain level is about 7 ... this last reopening of the leak has produced the most volatile symptoms that he's ever had!

Current Status: Going back to Cedars and Dr. Schievink for surgical repair in February. After 7 weeks of being sealed from the blood patch enough healing SHOULD have taken place to prevent that site from reopening. Clearly a more patent repair is needed for resolution!

Other Info: This is (now) his 3rd leak episode. First one was in July 2003 following an LP for viral meningitis (which he had). We didn't know he had a leak, didn't know anything about PDPH (post dural puncture headache), so we never sought treatment and thought that his healing time was just prolonged due to severity of meningitis/encephalitis. It took 4+/- months for headache to resolve (dura to seal).
Second leak episode was in September of 2006 when he experienced the same meningitis headache (it's one of a kind) with both fever and stiff neck so we went back in ER for LP. This LP was different. He says it felt like it popped when the needle went in. Turns out he had meningitis again, this time bacterial from Rocky Mountain Spotted Fever. Initial thought 3 weeks post LP was PDPH so he had EBP #1 and no one followed up, so we assumed that since it brought no lasting relief that he didn't have a leak and was going to take forever to heal just like last time....

[MrsHareN]

Age: 52

Gender: Female

Type of Leak: Unconfirmed, probable cervical or thoracic. Onset associated with trauma from rear-ended car accident August 2008, and Whiplash injury, causing 2 cervical disc protrusions with anular tearing. Cisternogram negative for cranial leak.

First Sign of Leak: Persistant severe headache, top of head to back of head, every minute of every day for 18 weeks. Only relief was to lay down flat and keep recumbant. Narcotics made headache worse and medication of any kind did nothing, absolutely nothing, to relieve it. Strong caffeine lessoned headache some in intensity. Position changes were excruciating. Had nausea all the time. Slight clear nasal drainage from one nostril, could have been coincidental drainage from sinuses, unsure now, as drainage has subsided with second EBP. Weird body tremor, unbalanced, vertigo, brain fog, slight decreased hearing. Couldn't retain short term memory and vision disturbance. Went to doctor 3 times for vision problem thinking I had something going on.

First Diagnosed: December 2008. Cerebral Hypotension from possible CSF Leak.

Brief Summary of Tests to date: 5 weeks after accident-Cervical MRI without contrast, 4 weeks after that - Brain and Cervical MRI with contrast, Brain/Face/Sinus CT with contrast. Flexible nasal/sinus/throat scope with ENT, Lumbar puncture for fluid pathology and opening pressure reading. Epidural Blood Patch with relief of headache for 3 days. Cisternogram with dye and opening pressure LP reading 17 weeks after accident. Second Epidural Blood Patch done at L3-L4 level (above 1st site of LP).

Brief Summary of Treatment to date: 4 weeks after having second EBP I am pain free. Symptoms have disappeared and my thinking and memory are being restored back to normal again. I owe it all to the Lord and praise His Holy Name for this gift of healing!!

Current Symptoms: My whiplash injury shows itself yet with neck pain, stiffness and limited mobility in one direction. Occiputal/Scalene muscles that attach to the back of head will burn with fatigue. The radicular pain in one arm is gone. I'm not dizzy and my vision has returned to normal (except for bifocal use). Can walk a straight line completely sober now!


Current Status: I am very optimistic that this nightmare is over and seek a pain free future. My prayers have been answered and they go up to Him for your healing. My husband and children love me more now because I'm not bitchy anymore.

Other info: Just a note to all of you. I came across this forum seeking help, knowledge and understanding, when I was at my lowest. I recieved love, support, guidance and hope from you when I wasn't ready to take it all in. Now that I have a chance to live and enjoy the life God has given me again, I feel guilty to say how well I am doing. I will make, "that mess my message," and hope to help others as you have helped me. Blessings, Mary

[burk]

Age: 41
Gender: female
Type of Leak: spontaneous
First Sign of Leak: Aug 2006
First Diagnosed: june 2008
Brief Summary of Tests to date:MRI's, CT's, xrays, cant remeber all. waiting for myelogram
Brief Summary of Treatment to date: meds, meds and more meds, nerve blocks, prolotherapy, teeth extractions (all prior to dx), 3 blood patches (after being diagnosed)
Current Symptoms: ortho h/a's
Current Status: waiting on last bp for effectiveness then off to LA.
Other info: took two years for a diagnoses and to quit being treated like a nut case seeking drugs. Feel I am on the right track after finding this sight!

[forevan]

Another leaker here! So glad to have found this forum. Hoping that I can both get and give information and support. This really is a difficult diagnosis so I feel for everyone who is struggling.

Age: 35

Gender: F

Type of Leak: due to traumatic injury (epidural+spinal anesthesia combo during childbirth---MD not able to get spinal portion but made multiple punctures through the dura--around 5 or 6--while attempting before giving up on spinal portion)

First Sign of Leak: March 2007-within about 24 hrs postpartum was complaining of h/a (the response from my doc was oh, it's probably hormones) and stiff neck (response from nurse was bad hospital bed).

First Diagnosed: as an acute post-puncutre leak April 2007 about 1 week post-partum then delay in correct diagnosis for 6 months (the docs here hadn't seen a "chronic" leaker so when had ongoing headaches they just medicated them and said it was going to take time to heal from irritation of meninges), correctly diagnosed with chronic post-puncture spinal fluid leak by Dr. Schievink November 2007

Brief Summary of Tests to date: Can't remember all and the results but have done most everything---initially had a subarachnoid hemmorhage and hematoma near site of botched spinal punctures seen on MRI and CT plus LP X2 (to rule out meningitis) getting only bloody CSF, 2 CT myelograms not showing a truly clear "leak" but Dr. Schievink seeing an area near attempted spinal anesthesia that sort of bubbles out and doesn't follow along clear margins as it should (an area my doc thinks is weeping/seeping)

Brief Summary of Treatment to date: 2 separate low volume BPs (10-15cc) at local hospital 1 week post partum, 3 high volume BP (about each time 45cc and double sited) with Dr. Louy/Dr. Sheivink at Cedars-Sinai (had some relief with all but not long lasting) last was Nov. 08, fibrin glue to suspicious area on myelogram Nov. 08 with good results for about 3 wks (but 1 wk of that was spent dealing with another acute leak from myelogram which healed on it's own as they normally should).

Current Symptoms: dull, aching daily headache that interferes with my life which worsens throughout the day and the longer I have to stay upright (I have 2 small children at home), somewhat positional as I get relief within about 10-15 min of lying flat (also get a bit of relief from abdominal binder, caffeine, tramadol and Maxalt (a triptan)), tinnitis (which I think is here to stay as it has never gone away even when h/a's did after treatments), light and noise sensitivity (light sensitivity has gotten better over time), very sore neck, fatigue

Current Status: waiting on surgery repair date (end of Jan/early Feb?) with Dr. Schievink. most likely will try and use a muscle patch to try and cover the area visualized

Other info: Dealing with this has been a huge adjustement as I was previously very healthy and active and just hoping to get this issue resolved so I can be the mother (and wife) that I want so badly to be. I do have to say I am definately better than I was say a year ago (maybe some of the procedures have healed part of the injured dura but not all?) but can't imagine living the rest of my life feeling like this so onward with surgery.

[ZagsGirl]

Age: 26
Gender: Female
Location: Spokane, WA
Type of Leak: Spinal: Somewhere between T12-L2
First Sign of Leak: July 2008- Slight headaches and I've never had headaches before
First Diagnosed: Confirmed by MRI January 2009
Brief Summary of Tests to date: 11/2008: Head MRI w/o contrast (negative), head MRI w/ contrast (negative), 1/2009: Full spine MRI w/o contrast (positive for leak and brain sag), next is CT Myelogram
Brief Summary of Treatment to date: Lumbar blood patch 12/2008 (felt better for 6 days), Gabapentin: 600mg/day and LOTS of excedrin so I can go to work. For the last 3 months, I've spent (almost) every minute I'm not at work laying flat.
Current Symptoms: Constant head pain when I'm not laying down
Current Status: Hanging in there...

Thank you everyone for your posts!!

[dorame]

Dora-- treated at NorthShore hospital (Evanston, IL), Dr. Taber neurologist correctly diagnosed on day 2 from symptoms and MRI
Age: 42
Gender: F
Type of Leak: spontaneous, cervical or thoracic
First Sign of Leak: 11/08 sudden onset with severe head and neck pain
First Diagnosed: 11/08
Brief Summary of Tests to date: brain CT & MRI, spinal MRI with and w/out contrast, CT angiogram, CT myelogram (showing large leak between C2 and T10)
Brief Summary of Treatment to date: caffeine IV, Excedrin Tension, blood patches (3rd at T1, the rest lumbar; 2nd 30cc, 4th & 5th 30-40cc)
Current Symptoms: mild head and neck pains occasionally, tinnitus, muffled hearing and slight head/neck pressure when upright, weakness from bedrest i.e. so much better
Current Status: last b/p was a week ago. waiting to see if I'll heal completely without further treatment. Still spending more than 1/2 my time lying down. Not using Excedrin every day anymore!
Other info: hard to believe possible cause: 2 weeks prior I did a headstand and fell over. I have Reynaud's. My work space might have high mold/mildew issues. Last two blood patches were supposed to be large volume, but nerve pain prohibited larger injections.

[bsih]

Age: 54
Gender: F
Type of Leak: Rhinorrhea from Surgical malpractice
First Sign of Leak: Immediate post surgery
First Diagnosed: 7-05
Brief Summary of Tests to date: CTs, MRIs, Lps, Cisternogram, Myelogram, nasal scopes
Brief Summary of Treatment to date: 3 Craniotomies, VP shunt installation and removal, OTC pain meds, Norco.
Current Symptoms: Leaking, headache, tinnitus, vertigo, sleep disorder
Current Status: Bifrontal craniotomy pending - would like to not have it!

Other info:

I leak like clockwork every 1-2 hours. I am having particular problems with the orthostatic headache (while trying to maintaining a work schedule as a single parent), sleep disorder, body pain and malaise and tinnitus.

I am in Orange County, CA. Any input/advice you could render would be very appreciated!

Thanks,

Barbara

[ladynred1997]

Age: 40
Gender: female
Type of Leak: csf; tear located in cribiform plate
First Sign of Leak: 2/2008
First Diagnosed: 3/2008
Brief Summary of Tests to date: CT scan with and without contrast, cisternogram
Brief Summary of Treatment to date: surgery 4/18/09; f/u visits show clear
Current Symptoms: some burning on top of head; sense of smell not 100%; tingling on face; nose feels a little numb, but better than it was last year
Current Status: recovered I guess
Other info:

[MissyB]

Hi,

I new here so thought I'd add my details:

Age: 37
Gender: Female
Type of Leak: Rhinnoreah (12mm hole in cribriform plate)
First Sign of Leak: Unsure as I thought for years it was sinus but guess about 14yrs ago
First Diagnosed: Dec 2008
Brief Summary of Tests to date: Beta 2 transferrin test & CT scan confirmed
Brief Summary of Treatment to date: None yet, awaiting surgery due late March 2009
Current Symptoms: constant leak from right nostril, excessive tiredness, tinnitus, cognitive decline in reading & writing and decline in stress coping, constant brain shut down, headaches now and then, constant movement in head, night driving issues
Current Status: Waiting for frontal craniotomy to repair with skin & muscle graft

Thanks
Belinda

[omeronly]

hi there,
I just founf it a week ago that i am having headache in my upper area of head, and gets nose leakage of water when ever i bend. here is my condition, PLease guide me (omeronly@gmail.com) is my email... plz plz plz guide me.

Age:24
Gender: Male
Type of Leak: Might be CSF leak ( not consuled with doctor)
First Sign of Leak: A couple of weeks ago.
First Diagnosed: Not yet
Brief Summary of Tests to date: ( not yet)
Brief Summary of Treatment to date: Dont know any treatment..
Current Symptoms:Having water leakage from my right nosetril whenever i bend and having headaches in my upper head.
Current Status: Facing the issue.
Other info: I never got any surgery, or didnt get any injury in last five to ten year on my head... But still i dont knwo why it happened?

[bsih]

There are spontaneous leaks - not from surgery or injury. Get those Clinistix and see if there is sugar in the nose leakage. That will give you an indication if it is CSF or just drainage.
Keep us posted....
Bsih - Barbara

[ChrisB]

Age: 38
Gender: Male
Type of Leak: 3 Active leaks- C1, T1, T11
First Sign of Leak: January 15, 2006
First Diagnosed: September 15, 2006
Brief Summary of Tests to date: 25+ MRIs, 25+ CTs, 8 Mylos
Brief Summary of Treatment to date: 19 Blood Patches, 4 surgeries- T1 (1), T11 (3)
Current Symptoms: Usual ones
Current Status: 4th surgery failed at T11 site- December 2008
Other info: Waiting to return to Mayo for another evaluation-current leak is assumed to be T11 site which is ventral and difficult to acccess. 4th surgery went straight through my dura, past cord and stitched from inside.

[sis2831]

WIfe[[[of leaker telling story(nightmare)

Leaking= 2 years 3/2/07 due to steroidal spinal epidural for low back pain....dco got a "wet tap" and then did blood patch....then passed out, admitted to hosp thru ER, CAT scan said there was air in brain,,,,due to the leaking of spinal fluid.

Released next day, and the headaches started a day after discharge...then the ringin gin the ears, light sensitive, noise, smells/odors would aggravate headache. Passed out many times...just head would feel real hot and then ban i was out!!!

Took 6 months for anyone to seriously look at me and that was by my wife crying at her appt that someone needed to see me, as i had lost 20 pounds, and looked like i was dying of cancer

The doc orig thought i still had leak, but hosp anesthesiasologist was SURE that i could not still be leaking after 6 months....sigh

the only thing that helped was a regimen of prednisone....in three days i felt like a new man....then about two months later....things started getting bad again. started passing out again, and thru all this i have been VERY fatigued....like i was in the worst street brawl...just whipped of energy

Then the sent me to Neurologist, took 3 months to get in....and then had blood patch, lasted about 3 weeks...then sympthoms came back....and had no sick pay time left....now i am stressed how we will survive.

Long story short....i have another patched scheduled for 3/9/08...will see what happens.

Test that had been done:
MRA MRI TILTTABLE TEST
myelogram, adrenal function test, stress test, ekg, and lots of blood work!

[9427doug]

I am a 36 year old male and I began having a spontaneous leak approximately five years ago. If I lean forward, the leak comes from my right nostril, but if I lean back I feel it go down my throat. Sometimes I swallow it and sometimes it goes down into my lungs and causes me to cough. My leaks spontaneously come and go. They last from as little as one weekend to a month and a half. Most of the time, I don't get strong headaches, but occassionally I do. My greatest symptomology is that I have a feeling of fatigue and "soreness" around my body when I am leaking. I have undergone MRI's and CT Scans, but the doctors have not found the leak yet. I have never developed meneginits. I have gone to an ENT and they tested the liquid from my nose confirming it is CSF. I am currently leaking, but my last leak was October of 2007. So as you can see, my leaks are not as severe as others on this board. While I know I should get it fixed by surgery, I am wary of doctors and getting a lumbar puncture to squirt the dye in my spinal fluid and then maybe they might be able to find the hole. Since my symptoms are managable, I don't take any pain meds at all, I am just going to deal with it.

[girlygirl333]

I keep meaning to do this and can't remember if I did. I apologize if I posted this already but I checked and didn't see anything.

Age: 36

Gender: Female

Type of Leak:Not quite sure, still working on diagnosis. But I'm guessing cranial since fluid leaks profusely from my nose, a little from my ears and I'm beginning to think maybe from my eyes???

First Sign of Leak:I'm not certain on this either. If we are talking actual fluid leaking out...I think that was about a year and a half ago that it became a little difficult to ignore. If we are talking stiff neck/debilitating headaches/photophobia/phonophobia/nausea/vomiting treated as meningitis (spinal tap then given rocephin because they could not r/o early meningitis) my first episode of that was in 97?? I believe.

First Diagnosed:Still waiting.

Brief Summary of Tests to date:Head CT, MRI to check for Chiari Malformation (my symptoms matched to a T, head of Neuro was pretty certain she had solved my "medical mystery" until the test came back "fine"), CSF Flow Study MRI all without contrast. All were "fine". Actually my last test..the CSF flow study I believe...showed mucosal thickening of the paranasal sinuses (I don't have it in front of me, so I might be off a little on the exact terminology) Of course I was told that was nothing. Latest was a Skull Base/Cervical MRI with intravenous contrast. Still waiting on that. I also managed to leak a good 5ml, all at once, in each of two test tubes for them to test for Beta-2 Transferrin so we'll see what happens with that. *wish me luck! Also lots of blood/urine screens (most of them the reg. run of the mill tests over and over). I've had high CRP, low anion gap, low neuts, high lymph, high eos. A couple of borderline low potassium. Negative RH, ANA, HIV, etc. (doctors were certain I had an autoimmune disorder based on the duration and frequency of my symptoms..everything came back negative) Positive Vit D deficiency. (I brought it up by making a conscious effort to expose as much as skin as possible when I was out on sunny days for about 20 min or so).

Brief Summary of Treatment to date: I've been given so many meds I could start my own pharmacy! I have Kaiser and in my experience they have done nothing but throw medication at symptoms. It has been an absolute fight to get them to even try to figure out what is causing it. Antibiotics, pain killers (what a misnomer), muscle relaxers, anti-anxiety/antidepressants..because you know..it's all in my head, migraine meds (Imitrex, Maxalt, etc..had severe allergic reactions including temporary paralysis), anti-nausea, physical therapy and oh so many toradol injections for headaches. Many others..too many to list.

Current Symptoms: I'm not sure if all of my symptoms are "potential leak" related but I will list all of them with an ! next to those that I feel are/may be leak and or neurological and a ? when I'm not sure.

Fluid leaking from my nose: (ears and eyes on occasion too, but not at the same volume as my nose) Looks like water. Drips in uniform drops that are a little smaller than a dime when they splash. (!)

Headaches: Migraines that start with a pulsing vein sticking out of my left temple (not normally visible/palpable). Include extreme phono/photo phobias, nausea, vomiting, visual disturbance and excruciating pain. (!)

Exercise/Activity induced headaches: Pain/stiffness in low back and hip area. Pain/stiffness in shoulders and neck with tremendous pressure at the back of my head! Can include above symptoms. Only way to make it bearable is to lay down perfectly flat/still with a cylindrical pillow under my neck to tilt my head back and ice packs covering my head/neck. Sometimes this helps with headaches above but not always (!)

Heaviness: My head often feels to heavy for my spine, like I need to be in traction to keep it up where it should be. (!)

Fatigue; All over weak/tired feeling most of the time. (?)

Stiff muscles/Pain: Feels like my muscles are loaded down with lactic acid from doing very little activity. If I raise my arms over my head and lower them a few times my muscles feel just like they would if I'd had a very intense workout. Sometimes can not walk all the way up my stairs without stopping for a rest. (sore, burning, weak) (?)

Clear Mucous: Once the leaking starts I inevitably have an overproduction of clear mucous. (and typically these sneezing fits that feel like my head is going to burst before they stop). It will just pour out of my nose. I almost always lay down to stop the dripping and/or running. Then it builds up in my lungs and I get these clear gel casts about the size of a tic tac with air bubbles in them. It will sound like I'm breathing through water logged filters until I cough it all out. (!)

Flu-like symptoms at least once a month: All over achiness, coughing, sneezing, slight fever, etc. (?)

Nausea/Vomiting: I vomit white foam. No rhyme nor reason. Sometimes it is accompanied by nausea, sometimes not. Can happen right after I eat or if I'm hungry. (!)

Intolerance to all kinds of things: I used to drink water like crazy, now plain water (any temp) makes me sick to my stomach, causes severe cramping and can even cause me to throw up. (?) I've become allergic to all kinds of things, including a large number of medications (?)

Visual disturbance: Stars/floaters, worsening of vision, pain, pressure, light sensitivity, etc (!)

Hearing: Sometimes when the pressure builds up, my hearing becomes very muffled...also hear various sloshing/crunching sounds in my ears or behind them.

Mood disturbance: I have these rages that I never used to have. Over the tiniest of things at times. I scream like a psycho (scares my poor kids half to death :^( not to mention me) I get really weak right after it happens too. (!)

Low blood pressure: Everytime I go to the doctor (which is a lot) the person taking my blood pressure says "your blood pressure is pretty low, is it always like that?" When I questioned it I was told it was no big deal. (?)

Dehydrated feeling: I wake up everyday feeling hung over :^( I've been tested to see if I was dehydrated and it came back "fine". For the past several months I have a very distinct dehydrated feeling in my brain. I can feel where my brain is inside my skull..I am incredibly aware of it. It feels like someone has there hand wrapped around it from behind. *picture this: you put your arm up bent at the elbow, then you are holding your hand out like a claw bent down at the wrist with a ball in it ...only it isn't a ball.it is my dehydrated brain :^( (!)

Sicca Syndrome: Basically all of my mucous membranes are severely dry (except when my nose leaks/runs. (!)

Dropping things: I drop things all the time! It's like all of a sudden I don't realize it was in my hand. Not sure how to explain it. I have problems with my feet dropping/dragging occasionally when I walk, especially left. Dr. thinks the dropping is what caused me to trip on some laundry and break my fibula.

There's more but I have to go will try to finish up when I get home.

Current Status:
Other info:

[Alesis]

Age: 31

Gender: Female

Type of Leak: Unknown

First Sign of Leak: Headaches -- April 2005

First Diagnosed: Undiagnosed

Brief Summary of Tests to date: Plain X-rays of entire spine. Bloodwork that came up normal.

Brief Summary of Treatment to date: Physical therapy, which consisted of various exercises and only made the pain worse. Various OTC pain relievers, which barely touch the pain. Three recent spinal adjustments by chiropractor.

Current Symptoms: Mostly left sided headache, which is aggravated by bending over, standing up and sitting for long periods of time. Extreme fatigue, lightheadedness, head-pressure, and inability to concentrate all rolled into one. Feelings of dampness on the left side of my head, as well as the top. Random itchiness in my left ear; when swabbed, it slightly wets the Q-Tip. Left eye throbs. Eyes water when I eat, so does my nose.

My symptoms tend to get worse as the work week goes on, and I have had to leave work early due to my symptoms at least once each week for the past three weeks. I have not felt like going out at night, nor driving more than a few miles due to my symptoms. I am just not myself anymore, and I feel like my body is trying to tell me something.

Current Status: Neurologist appt. on 15 April.

Other info: Back pain, Psoriasis, Asperger's Syndrome, Polycystic Ovary Syndrome (PCOS). Fell on the ice four times in February 2005. Intially had back pain, which went away though physical therapy. Had a 5 cm, benign tumour of the parotid (salivary) gland removed 26 Aug 08. Depression/worry part of the Asperger's has been acting up due to my symptoms.

[sis2831]

Age: 50
Gender: m
Location: huron, Ohio
Treating Facility/Doctor: dr roderick spears, currently-neurologist
Type of Leak (Cranial/Spinal/Both/Unknown):spinal
Spontaneous / Traumatic: traumatic from ESI
First Sign of Leak: 3/2/07
First Diagnosed: 3/2/07 but after BP same day of wet tap, NO ONE believed still leaking till feb 08
Brief Summary of Tests to date (may or may not include some of the following):
tilt table test....as one of sympthoms is passing out
echo cartiogram
lyme disease test
adrenal function test=.endocrinologist

Imaging Studies to date (may or may not include some of the following):
MRI W/WO Contrast
CT W/WO Contrast
MRA brain
MRI Myelogram
CT Myelogram / Post Myelogram

Has Leak Site been ID'd by Imaging:not so far...have another MRI of lumbar 3/20/07

Brief Summary of Treatment to date: bp 3/9/09 had some good days after...not right after, but about 4 days after, LOW BACK PAIN almost unbearable, then the passing out came back, which had been abated by a little over a month, taking fludrocortisone presc. by endocrinologist, to increase blood pressure, after passing out again he doubled the amount for few days, and seems to be better, Blood patch 2/25/08, predisone 8/07- had relief for about 2 months, in 3 days after taking them...felt great...then ha came back and severe fatigue....which is main complaint, along with fear of passing out, sometimes i get where odors..cooking, candles...will make me ill and give me a headache, bending over just kills my head...noise sometimes will bother me, when it does it is bad, and also bright lites are murder
Has Treatment Resolved Leak: right now they do not believe a BP will seal me, think the hole is too large, that is why they are doing the MRI....so still very tired, and tired of going to docs and made to feel like a crazy person.....just fired PCP, cause I passed out and neuro, wanted me to go to ER, locally, and wife went over to talk to PCP to ask for me to be admitted thru ER, or by talking to neuro...told wife for me to stay hydrated...like after 2 years we did not know at least that. Anyway, the medical profession has like someone else said....no problem cashing your check whether they help or not.
Possible Underlying Conditions Contributing to Leak maybe too many steroidal injections, weakening the area l4.l5..given for lumbar stenosis, and disk herniations l4.l5, s1 Current Symptoms: SEVERE fatigue, ha, fainting, light sensitivity, chills to the point of shivering, intolerance to heat (summer) memory loss, brain fog
Current Status: all the above, and waiting for mri to see what they will do to repair the leak
Other Info:This site, wish I would have (wife) found it in 2007....so much info, and just glad we have it now....Being treated at Cleveland Clinic, Ohio...It is so sad though, that the docs egos ??? get in the way, along with just dismissing how BAD you feel....Have lost nearly 2 years of wages, and has created such a financial crisis in our home,...hoping we do not lose it to this ailment, that seems to have taken away everything else we enjoyed....as i spend much of the day in bed, not so much cause of HA pain, but i am just SO TIRED....after i get come out of passing out, it feeels like i have been in the worst street fight of my life.....just drained. I had lost weight, 20 obs, and i am a skinny guy to begin with, and the wt went up and down for fiest two years...now seem to be holding steady.
MISSION) (wife) to do something to make the public MORE aware of this CSF leak, and how underdiagnosed it is, and how it is ruining peoples life! Maybe a segment on Oprah or Dr. Phil....I emailed Oprah....maybe if others do the same she might just do to the interest from alot of people!!!!!!!!! And even for people that are still suffering now, and do not know of this website, just that feeling that you are not nuts, and that there are others that understand and a wealth of information....and just MAYBE some physicians may check it out, and find out alot of stuff!!!

[kb333]

Age: 27
Gender: Female
Type of Leak: Unknown - undiagnosed

First Sign of Leak: Headache, extreme head pressure, ear fullness, sense of imbalance/ disequilibrium -- October 2001

Brief Summary of Tests to date: CT Scan 2001, MRI 2009 (recent results were said to be normal)

Brief Summary of Treatment to date: I have had one severe episode in 2001, went to ER and they had diagnosed me with labrynthis which didnt seem to match my symtpoms, but I went with it cause I didnt know any better. I now believe was a possibly a CFS leak that had resolved on its own. My symptoms were severe(as they are now) I had to take a semester off in college and i was in bed for over a month, and didnt feel back to normal for almost 3 months later. Now 7 years later here I am again with these extreme symptoms, confused and trying to find direction.

Current Symptoms:
-EXTREME head pressure, worse upon standing, and gets worse the longer i'm up and mobile, slightly relieved upon lying down. Feel pressure/pain often behind nose and top of head
- Feel off balance, or a sense of disequilibrium (feel like right side of body is heavier)
- Ear fullness pressure, feel like fluid is in my ears although doctors say they look fine
- Consistent headaches moderating to dull to severe
- Eye disturbances, blurry/sparkly looking spots and floaters ( in right eye)
- Clear fluid running down throat and nose
- naseau
- arm, leg weakness and tingling (right side) leg feels like an ankle weight is on it
- lower back /buttocks pain

Current Status: Have been to an ENT and Neurologist, both have been no help. When I mentioned CSF leaks to Neurologist, he said no you wouldnt be draining from your nose, or in the back of your throat from a CSF leak. I was flabbergasted when he said that as he obviously had a lack of knowledge of the condition. They just keep on throwing me migrane & tension headache medicine, none to which have helped.

I am normally live a very active, social lifestyle, working over 40 hours a week, doing volunteer on the side, and exercising 4-5 times a week. I have now been reduced to just trying to make it into my regular job and not having much luck at that either.

My last straw with my current Neurologist was when he threw a script of anti-depressants at me and said try this and asked if I had anything emotionally going on. I nearly lost it! The only thing emotionally going on I have is doctors like you who are clueless and can't help me! (I wanted to say that but didnt) I resorted to, no I have been blessed with a great life - the only thing effecting me is this illness and no one seeming to help resolve it. I walked out biting my lip so I wouldnt cry.

Its been almost 6 weeks now of continous symptoms, feeling run down and helpless, and trying to figure out my next steps and get a Dr. who is willing to help me.

[Ms. Pain]

Age: 35
Gender: F
Type of Leak: Cranial/Sinus, dripping through left nostril
First Sign of Leak: Feb 15 2009
First Diagnosed: in process
Brief Summary of Tests to date: several endoscopic evaluations of my sinuses, which did not detect a leak. Also had a high-res CT and that showed no leak. Scheduling a pledget study for next week.
Brief Summary of Treatment to date: IV caffeine, Norco, Fioricet (unhelpful)
Current Symptoms: Extreme pain on the top of my head--feels like someone is spitting my head open with an ax. Dizziness, pain intensity stronger when upright, lying down does help a little. Nausea, etc. Dripping of fluid through my left nostril.
Current Status: in hideous pain.
Other info: Other health issues: still recovering from surgery to decompress my brainstem 2 years ago, I've had two sinus surgeries in recent years along with persistent sinus infections (including an 8 month fungal infection), Head/neck fused from skull base to C-6, trigeminal neuralgia, intense pain in left eye and difficulty reading.

[MartinB]

Age:57
Gender:M
Type of Leak: Post LP for myelogram
First Sign of Leak: Feb 2008
First Diagnosed: Mar 2008 - 2009 awaiting confirmation current diagnosis
Brief Summary of Tests to date: 2008 CT + MRI contrast, 2009 MRI + contrast
Brief Summary of Treatment to date: 2008 Treated conservatively with bed rest.
2009 1 x EBP + 2 x caffiene i.v. infusions
Current Symptoms: Postural headache and tinnitus
Current Status: in 2008 Headache impoved gradually over a number of months. Tinnitus persisted. After symptoms signifiantly worsened this year am awaiting diagnosis. Currently unable to stay upright for more than 10 minutues before headache get bad so unable to work
Other info:[/B] Treatment under consulatant Neurologist specialising in headache at Charing Cross. Wondering what I should ask for - another EBP or another scan? If another scan then what?

[LauraL840]

If you are interested in reading DH's leak history prior to his first surgical repair; read post '94' on page 10 of this thread: Leaker Roll Call (http://brain.hastypastry.net/forums/showthread.php?t=14514&page=10). I figured short and simple might be the best for this update, so I am only posting the information regarding his treatment for the last 6+ months.

Updated/latest information in blue

Age: 51
Gender: male
Location: NC

Original Treating Facility: University of North Carolina Medical Center, Chapel Hill - Neurology and Spine / Pain Management Clinic

Current Treating Facility and Doctor: Dr. Wouter Schievink - Neurosurgeon, Cedars Sinai Medical Center, Los Angeles, CA

Other Treating Facility and Doctor: Dr. Linda Gray-Leith - Neuroradiologist Duke University Medical Center, Durham, NC

First Sign of Secondary Leak:
** Was completely headache free for 3.5 weeks after direct surgical repair. Then had a slow onset of atypical headaches, which we now know were the beginnings of high pressure! **
June 29-30/2008 His headache went from distinctly high pressure to low pressure overnight!

Type of Secondary Leak: Lumbar

Location of Secondary Leak: L3

Treatment of Secondary Leak:
10/14/2008 -Dynamic CT-guided Epidural Blood Patch @ Duke with Dr. Gray
10 cc's applied directly over L3-L4 - Headache transitioned from low pressure to high pressure over next several days and was controlled (to a limited extent) with Topamax for 7 weeks.

2/2/2009 - Direct Surgical Repair #2 @ Cedars with Dr. Schievink
Surgical laminectomy between L2 - L5 (L4-5 laminectomy done in May 2008). Original surgical site intact with no visible leaking. 2 dural defects at L2-L3 located and repaired with muscle graft, fibrin, and gel-foam soaked blood patch.

High pressure HA developed on post-op day 2/3 and controlled with Diamox and Topamax initially and then just Topamax for several weeks. Pressure seemed to regulate and Topamax was removed for 3 weeks before he started having high pressure related headaches return. However he's currently not taking any medication as the pressure is 'tolerable', much more so than the artificial low pressure he achieves with use of Topamax.

Current Status 11 weeks POST OP:
LEAK FREE :D!
Has returned to work about 6 hours a day.
Has physical therapy 2xs a week to work on strengthening core abdominal and back muscles.
Has elevated head pressure that fluctuates throughout the day but is tolerable and does not currently need medication to alleviate.

[amycavet]

Amy C.

Age:41
Type of leak: spinal--thoracic
Gender: female
First sign: Mid July 2008
First diagnosis: Sept 2008 ---debated by several docs, suggested by 1. Diagnosed by Dr. Schievink in April 2009
Tests: MRIs of entire spine and brain, CT scans of internal auditory canals, MRA,MRV
Summary of treatment: 2 blood patches by Dr. Schievink, about to get a fibrin glue patch
Current symptoms: Had orthostatic headaches in July/Aug 2008, misdiagnosed by ENT, developed subdural hematomas. Gradually headaches resolved except with exertion. Main symptoms now are tinnitus and a "blocked" eustachian tube which come and go throught the day. Did have facial pain back in summer of 2008 also.
current status: 2 failed blood patches, contemplating fibrin glue--- would like info on successes and complications please!

[healing@last]

Age : 39
Type of leak : lumbar from epidural
Gender : female
First sign : 4 Nov 2004 - birth of son
First correct diagnosis : 21 Nov 2008
Tests : MRI, CT scan, CT Myelogram, CSF Flow study - all normal except flow study but couldn't determine leak site.
Summary of treatment : 2 blood pathes - low volume within the first week of puncture - not successful. Doctors said impossible that puncture wouldn't heal on its own after 3 months when I still has headaches. Climbed on treadmill of neurologist after neurologist who diagnosed migraines, tension headaches etc etc and medicated with every kind of hideous medication - usually made things worse as migraine medication constricts blood vessels = less CSF production - not good for us leakers! Went to US in Dec 2007 came back with possible CSF leak diagnosis and found an anaethetist willing to do a blood patch - patch 3 in Jan 2008 - low volume - unsuccessful. Begged for CSF Flow study and got on in July 2008 - positive. Blood patch in Aug 2008 unsuccessful. Tried again in Sept 2008 - accidental puncture during blood-patch. Went to LA in Nov - imaging and high volume patch at Cedars with Dr Schievink at end of Nov.
Current symptoms: riding post-patch roller coaster. Went into HP straight after patch. Took Diamox for almost 3 months with some but not much success. Still having problems regulating CSF production and have HP symptoms; nausea, dizziness, blurred or strange vision, pain in neck area, pain behind eyes and in nose, forehead and ears. As pressure rises so these symptoms increase. Do have periods of feeling normal now sometimes lasts hours, sometimes I feel better for days. Seem to be improving slowly each month. Still unable to work due to bad periods lasting days and fluctuating nature of symptoms.
Current status : patched and on the road to recovery

[NancyB.]

Age: 59
Gender: F
Type of Leak: Spontaneous CSF leak in base of skull; classic Dandy Maneuver (ENT specialist called in medical student, resident and two nurses to watch my nose drip - almost as much fun as watching paint dry! ):rolleyes:
First Sign of Leak: July, 2008
First Diagnosed: idiopathic intercranial hypertension and chronic paroxysmal hemicrania diagnosed 2005; CSF leak diagnosed August, 2008
Brief Summary of Tests to date: multiple blood tests; spinal taps; CSF sample sent to Mayo Clinic; multiple CT scans, MRIs, cisternogram
Brief Summary of Treatment to date: CSF leak repaired endoscopically 8-30-08. Complications: (1) on last day of 10-day post-surgical antibiotic therapy, developed severe allergic reaction, and (2) shunt catheter migrated from lower abdomen up to between liver and diaphragm, causing intense pain. Have had numerous post-surgical sinus "clean-ups." Headaches (10 year history) continue despite ventriculoperitoneal shunt inserted at time of CSF leak repair.
Current Symptoms: HAs; sensation of a CSF "drip" - not a leak as before surgery; visual disturbances in left eye; intense orbital pain when looking up and to right - which in turn triggers HAs.
Current Status: Am functional and working fulltime but exhausted by end of day; love to garden but have noticed that outdoor activities and exercise promote dripping sensation of right side of nose and am suspicious of a new leak.
Other info: Rarity of conditions makes one feel like a guinea pig. Confidence in medical profession uncomfortably low.

[MsMisunderstood]

Age: 43

Gender: Female

Type of Leak: spontaneous / unexplained hole in left sphenoid

First Sign of Leak: May 2007 from nose dripping uncontrollably

First Diagnosed: August 2007

Brief Summary of Tests to date: CT scans, MRIs

Brief Summary of Treatment to date: passed from doc to doc

Current Symptoms: now dripping from both nose holes and starting to leak from left ear

Current Status: none ~ no insurance and neurosurgeon problem at Univ Hosp

Other info: have referral from health clinic but no one to refer to at this time ~ thinking of going to ER to see if anything happens and am sending emails to specialists around the country.

[katarczyna]

Age: 29
Gender: Female
Type of Leak: Not sure specifically, craniotomy site rear right portion of my skull
First Sign of Leak: felt a pop when I sneezed 2 weeks after brain tumor surgery, continued popping when I strained (coughed, sneezed), and it felt wet under my skin, when I wasn't wet. Heard a faint "whooshing" under the skin.
First Diagnosed: 11/18/08
Brief Summary of Tests to date: CT scan, visible and diagnosed by neurosurgeon
Brief Summary of Treatment to date: Surgery to reposition skull, and reinforced seal
Current Symptoms: None related to the leak. Just emotional - fearful of straining, sneezing, coughing - even 5 months later.
Current Status: Just fine overall
Other info: Still hear slight crackles when I lean my head back or roll over at night

[rjbry]

Age: 30 :D
Gender:Female
Type of Leak: Possible cranial
First Sign of Leak:5-06 after decompression for Chiari malformation
First Diagnosed: NOT
Brief Summary of Tests to date:3-d CT. multiple MRIs. lumbar puncture for infection and diagnostic reasons.(healed csf leak form that) Nerve studys.
Brief Summary of Treatment to date: Decompression and tethered cord surgery.
Current Symptoms: ringing in ears, fullness and muffled in ears, chronic pain, fatigue, headaches, neck and shoulder tightness, stiffness, and pain. clear nasal drip....
Current Status: chronic pain and fatigue.
Other info: still trying to get DRS to listen to me that I may have CSF leak, and to run the test...:confused:

[starbaby78]

Age: 30
Gender: Female
Type of Leak: Cranial
First Sign of Leak: September, 2008
First Diagnosed: May, 2009
Brief Summary of Tests to date: CTs w/Myelogram, MRIs, Lumbar puncture, X Ray
Brief Summary of Treatment to date: PT, Chiro, Rest, Scheduled Endoscopic Fat Graft, Rx meds- Vicodan, Percocet, Lyrica, Tizanadine
Current Symptoms: Persistent headache, pressure, dripping out of nose, facial pressure, neck pain, shoulder pain, back pain, ear ringing, queasy feeling, loss of smell and taste, persistent post nasal drip, pressure behind eyes, ear pain, fatigue, headache worse with bending forward
Current Status: awaiting surgery
Other info: Result of car accident in September, whiplash caused small fracture and 2 "defects" in cribriform plate.

[LeakyLaurainwv]

Age: 29
Gender: Female
Type of Leak: Thoracic at T8 nerve root (spontaneous)
First sign of leak: First began to have positional headaches in April 2003. Was diagnosed with Chiari and underwent a Chiari decompression surgery. (I have since been told by a NS that he suspected that I was initally misdiagnosed with Chiari). My symptoms improved, but did not resolve after the surgery. After about 6 months, I began to develop right scapular and right upper extremity pain and numbness as well as daily exertional headaches that I would describe as a pinch in the base of my skull (suboccipital region). I assumed the problems were post surgical healing and myofascial restrictions from scaring. Therefore, I tried physical therapy, pain management, and orthopedic referrals with no improvement in symptoms. I even went back to my original NS and got a blank, I think your crazy stare.
First diagnosed: In December of 2008, I ran across information on google about SIH. Everything fit. I approached my PCP and we began testing. I was officially diagnosed with a CSF leak by a NS in Pittsburg who specializes in failed Chiari surgeries. Finally, in May 2009 after chasing my tail in the east, I made the trip to LA to see Schievink.
Summary of tests to date: EMG right arm, Cisternogram, MRI of brain, cervical spine, thoracic spine, and lumbar spine with and without contrast, CT myelogram, and MRI myelogram with gadolidium.
Summary of treatments to date: Chiari surgery, physical therapy, pain management, massage therapy, thoracic low volume blood patch x 2, and fibrin glue in LA (May 21, 2009).
Current symptoms: I am only 10 days out from my fibrin proceedure, so currently I am playing teeter tooter with high and low pressure and feeling pretty dizzy and loopy. (Don't know if it worked yet). I just hope the fibrin glue worked and this nightmare of searching for answers is over.
Additional information: Although I had never heard of Chiari or SIH prior to reading it on my own reports, I do have some [B]limited[B] medical background as a physical therapist. If anyone needs help with exercise prescriptions or needs advice on activities, I would love to [B]try[B] to help. Send me a message. I might be able to help. The worst thing I can tell you is I don't know (which is an answer us leakers are used to).

[Mommy2Boys]

Age: 33
Gender: Female
Type of Leak: Still Unknown

First Sign of Leak: In March 2001, I had a terribly botched epidural with the birth of my first son. (3 misses before trying different level) I had a 25 ml blood patch which immediately alleviated all symptoms. Fast Forward to May 2008, I have always been a runner, weight lifter, swimmer, exercise fanatic. I met a local coach of the adult master's swim team who instructed me to change my neck position from looking forward to down at the bottom of the pool when doing freestyle. I came home with the worst headache of my life. The headaches came off and on for months, but were always orthostatic in nature and tended to hit in the afternoons following swimming. I stupidly blamed the headaches on my goggles being too tight, on dehydration, or as being exertional headaches. When I stopped the swimming, it was too late and the headaches became a regular occurrence every afternoon until they became constant once I was out of bed.

First Diagnosed: Local Neurologist October 2008, after 8 other doctors misdiagnosed me with migraines

Summary of Tests: MRA (negative), 2 MRIs with contrast (1- negative, 1- very slight meningeal enhancement), Full Spinal and Neck MRI- Normal, with hemangioma in thoracic area, 2 CT Myelograms (Normal, but zero opening pressure), Few prominent thoracic roots???

Treatment to Date: 3 Blood Patches. Patch #1 (Lumbar 10ml, but tilted whole body, head down on table for 2 minutes, wonderful relief for 3 weeks); Patch #2 (High Volume directed at old LP botch up site, no relief, terrible nausea/ vomiting)
Patch #3 (16 ml L1/T12, put in Trendelberg for 24 hrs, relief of HA, but meningeal irritation, nausea, vomiting, stiff neck, hyperacusis, irritability)

Currently Symptoms: Headache or very uncomfortable pulling sensation downward after standing anywhere from 1 second to 60 minutes, nausea, tinnitus that comes and goes, loss of appetite, fatigue, racing heart when standing, periods of blurry vision, facial numbness/ pulling when standing, lead in the head feeling, sometimes a feeling that my eyes are being sucked into my head when sleeping, dry mouth

Current Status: Appointment with Dr. Schvienk Jul 14th. Appointment with the local neurologist who diagnosed me and nursed me through 2 of my 3 hospitalizations next Tuesday for support that LA is the next step.

[chbrewer]

Age: 37
Gender: Male
Type of Leak: Spinal - multiple
First Sign of Leak: Headache May 2008
First Diagnosed: May 2009
Brief Summary of Tests to date: CTs, MRI, MRV, Allergy test, lumbar puncture, myelogram
Brief Summary of Treatment to date: multiple meds, acupunture, two rounds of blood patches
Current Symptoms: usually dull pressure headache. Headache is always present 24/7 since May 2008.
Current Status: Just had 2nd round of blood patches (5 first time, 7 this time)
Other info: Currently seeing Dr Linda Grey - Duke University Hospital

[slpavlansky]

Age: 32
Gender: Female
Type of Leak: Spinal at multiple sites
First sign of leak: November 2007, (three days after c-section surgery)
First Diagnosed: March 2009 with myelogram and LP pressure check

Tests: MRI which showed subcortial white matter leisions on brain (who knows what that means?) MRI with and without contrast, LP for all common diseases but no pressure check, LP for pressure check and 2 myelograms, 4 blood patch sessions with LP at each patch date

Treatment: Pain meds (did not work), Miagraine meds you name them (did not work), Caffeine (did not work), bed rest, blood patches adding saline. Pain shots in the forehead. Visits to neurologists, endroconologists, rheumotoligist (forgive my spelling), tons of blood work

Symptoms: daily headaches, some days worse than others especially when I am stressed or don't eat well, extreme pressure and pain in and behind the eyes (this is the worst of my symptoms) , pain in the back of the head and neck when I am laying down, some nausea due to pain, hurts to hear people talk, some vision disturbances, some occassional ringing in the ears or runny nose, back pain probably from blood patches, headaches get worse in the evening and at night. Seem to help slightly when I eat. Headaches started right after I had a c-section surgery with spinal block. However leaks are all up and down my spine. Also diagnosed with underactive thyroid at the same time in searching for headache cure.

Status: Dr. Gray at Duke is trying me on Diamox to make sure it is a low pressure headache. Dr. Sheivnik is going to review my films. If it is confirmed low pressure with multiple persistent CSF leaks then I will either do more patches with shunt insertion with Dr. Gray or Fibrin Glue in CA????? May need another MRI just to check on things in the noggin.....Who knows.... headaches... awesome!

[Laurie Dunlop]

Age:36yrs at onset, 10 months ago
Gender:Female
Type of Leak:Blelieved to be spontaneous however I did do some heavy lifting around the time of onset
First Sign of Leak:What I thought to be a migrane that just wouldnt go away (now I know it was a low pressure headache. I also had extreme nausea (like the kind I had when I was pregnant) and dizzyness....the pain was intense!
First Diagnosed:Theorized in February 2009 and confirmed April 2009
Brief Summary of Tests to date:CT head Dec.2008; MRI Head Dec.2008; MRI with GAD of Head Mar.2009; MRI with GAD of Thoracic and Cervical spine Apr.2009
Brief Summary of Treatment to date:At the onset I had 4 different Neurologist prescribe pain killers like Morphine with tales that it would all go away soon....this did NOT take place and I have just undergone my second EBP that didnt work. The first of my lumbar spine (30ccs) and the second in my thoracic ( attempted 50ccs but resorted to 30ccs due to immense pressure.) I am in Canada and they seem to do different procedures first up here in comparison to your cases....I am being told now by one doctor that I need a Cisternagram with isotope and another neurologist is meeting with me next week because he doesnt agree.
Current Symptoms:Constant headache with pressure in temples, top, and occipital region of head. Serious pressure and tension in back of neck. Headache worsens when I am upright for more than an hour.
Current Status:Still with HA
Other info:

[Laurie Dunlop]

are you any better...it has been 10 months for me

[Leaky Christy]

Age: 36

Gender: Female

Location: Phoenix, AZ

Type of Leak: Spontaneous - T1 to T2 possibly in cervical area as well

First Sign of Leak: July 30, 2009 Headache like no other, pressure at base of scull radiates up and to sides.

First Diagnosed: August 3, 2009

Treating Facility/Doctor: Dell Webb Banner Hospital, St. Joe’s Hospital, Barrow’s Neurological Institute, referred to Dr. Wouter Schievink just last Friday

Brief Summary of Tests to date: Lumbar Puncture (positive for low pressure after 20 failed attempts), CT Scan with & without contrast, MRI with & without contrast, CT Myelogram (positive for leak), & MRI Myelogram (positive for leak)

Brief Summary of Treatment to date: 3 x lumbar blood patch (one high volume)

Possible Underlying Conditions Contributing to Leak: none that I am aware of. Went from healthy, busy mom working and running around like everyone else one day to bed ridden the next.

Current Symptoms: severe pressure headaches 24/7 get better when lying down, neck pain & stiffness, fatigue, pressure in ears like under water, nausea, occasional vomiting, popping in neck, very agitated

Off & on: tinnitus, blurry vision, facial numbness, vertigo, seeing stars (bright flashes of light), tingling on scalp primarily in back, stabbing pain in head on right and left sides, jaw stiffness/pain

Other Info: Currently on short term disability from work, lying flat all day every day, taking vicodin for pain

[Berthabutt]

Age: 55
Gender: Female

Type of Leak: CSF leak, crevical-thorasic, traumatic from car accident
First Sign of Leak: 2005 (Had MRIs, CTs. Not important at time also had breast cancer fighting).

First Diagnosed:6/09 2cm (lumbar puncture,low) CSF, Intracranial pressure hypotensive, CSF leak, pseudomengingcele C2-T11, dropped brain, inflammed dura matter, Trigeminal Neuraglia

Brief Summary of Tests to date: MRis, Cts, Myelogram, lumbar puncture

Brief Summary of Treatment to date: Topamax, Nerve blocks, Trileptal, Baclofen. Advil. Vitamins. B 12.

Current Symptoms: Sleep apnea, Orthostatic headaches, Trigeminal neuralgia (facial nerve pain), fatigue, weakness, chiari malformation, voice hoarseness, leg uncoordination. Neck pain. Memory loss.

Current Status: Can't talk at times or eat due to Trigeminal neuralgia. Sometimes can't even drink water.Weakness. Difficulty walking. Headaches under control. Meds are controlling pain.
Other info: Appointment with Dr. S 9/22. He feels all symptoms related to leak. Can be corrected. Worked up until 6 weeks ago now on disability. No longer able to handle pain and not able to sit up for long. No longer able to talk well.
__________________
Not an expert-just a leaker!

[ks0519]

Age: 27
Gender: Female
Type of Leak: 8 leaks at multiple levels (2 leaking cysts, lumbar and thoracic leaks)
First Sign of Leak: headaches in the back of head, neck pain, MAJOR pulsating feeling all over back of head and neck, dizzy and weak. all of this increases in severity as the day progresses...
First Diagnosed: June 2009 (symptoms began November 2008)
Brief Summary of Tests to date: MRIs (brain w and w/o contrast), Cervical MRI, 2 Myelograms before Blood Patch procedures
Brief Summary of Treatment to date: 4 rounds of blood patches by Dr. Gray
Current Symptoms: 5 days after 4th blood patch procedure, still having some of the previous symptoms but not as often. Dealing with the high pressure with Diamox, but have a very hard time telling whether I am having high pressure symtoms or low pressure. Dr. Gray mentioned that I may be one of the few who has spikes in pressure. I havent' gone back to work yet so we will see...
Current Status: Going back to work tomorrow, we'll see how a day of teaching goes..
Other info: Thyroid issues since July, first levels were elevated now they are low. Borderline Anemic, and PFO (hole in the heart), scoliosis and slipped disc at L4 (makes lumbar punctures much more painful)

[sinusgirl]

Age:36
Gender:Female
Type of Leak: Ethmoid Sinus csf leaks
First Sign of Leak: two weeks after basic sinus surgery
First Diagnosed: Feb. 2007
Brief Summary of Tests to date: ct scans, mri's,
Brief Summary of Treatment to date: a failed blood patch, two csf leak repairs
Current Symptoms: spinal pain, base of brain pain
Current Status: unclear if I am leaking again
Other info:

[tinac]

Age:39

Gender:female

Type of Leak:cranial

First Sign of Leak:9 months ago left sided nasal drainage (clear)

First Diagnosed: Sept.09, Methodist Hosp. San Antonio Texas

Brief Summary of Tests to date: Sinus CT with/without contrast, Cisternogram (found exact location of leak)

Brief Summary of Treatment to date: bed rest, increase fluid intake mostly caffiene, Several attempts to control HA with Over the counter pain meds, prophalactic antibiotics for 6 months since my CT scans showed sinus problems

Current Symptoms: Chronic headaches 24-7, fatigue (by the time I am finished getting dressed in the morning I am done for the day), blurred vision, neck pain, facial pressure, hand and feet numbing (attempted to get out of bed and went straight to the floor this morning), dizziness...Just want to get back to myself again, can't keep up with my 4 & 6 year old boys anymore, but they are the reason I'm hanging in there.

Current Status: Looking foward to having surgical repair sometime next week.
Unable to work due to the dizzy spells, can't seem to concentrate. Lay flat most of the day, can't be upright for more than a couple hours.

Other info:Am applying for short term disability. I am a nurse in direct patient care so I really don't think it's safe for me to work with patient right now.


All of you affected by this hang in there::confused::confused::confused:

[fuzzy101]

Age:23

Gender:Male

Type of Leak:Spontanious / unidentified

First Sign of Leak:1.5 Years ago. April 2008. Sudden onset of neck/head pressure with balance problems and tremor along with fizzing sound in neck/back of head. Also pulling sensation on back of eyes.

First Diagnosed: August 2009

Brief Summary of Tests to date: CT - Brain/Cervical, MRI Brain/Cervical/Whole Spine with/without contrast - All came back with nothing however these were only cleared by the radiologist not neurologist.

Brief Summary of Treatment to date: 1 EPB done September with 22ml/cc blood. Symptoms gone for 3 days following 2 week period after BP. Symptoms have returned. For the period where i was feeling good i even got tired eyes!! I havnt got tired eyes without pressure for about 1.5 years it was the best feeling ever!Going for CT Myelogram 23rd October.

Current Symptoms: Base of skull pressure, can radiate up into head, shockwaves through head - feels like electrical sensations almost a stunned feeling, slight balance problems feels like i am walking on eneven surface, Fizzing sound still comes from neck occasionally - possible leak site. Pulling sensation on back of head/neck eye muscles, vertigo (rocking sensation rather than spinning), when i take a deep breath of air in through feels like head will explode very uncomfortable. All symptoms ease when lying flat.

Current Status: CT Myelgram 23rd October hopefully reveals something.

Other info:Still going to work everyday, because i was told it was anxiety for a year have lived life as normal, gym work and marathon running wouldnt have helped the situation.

Perseverance will pay off. If you are not getting anywhere with your current Doctors go elsewhere, there are alot of money grabbers out there. Hang in there people you will get answers.

[Gill]

Age:41
Gender:Female
Type of Leak: Spontaneous/unidentified
First Sign of Leak: Chronic headaches Jan 2009
First Diagnosed: July 2009 from symptoms
Brief Summary of Tests to date: CT scans one of sinuses and one of the brain
Brief Summary of Treatment to date: no treatment received, Neurologist reckons I should heal in 6-12 months!! Currently on Amitriptyline 40mg to control pain
Current Symptoms: Chronic pain across forehead, neck sore, head feels to heavy for neck, pain behind eyes, shooting pains in ears, tinitus, ocasional dizzy spells, exhaustion.
Current Status: Out of a week I have 2 very bad days, 1 not so bad and 4 okish days. Trying to work but struggle after 3 whole day and end up in bed.
Other info: Going to see neurologist in 2 weeks, hoping to persaude her to do more to help me. I was diagnosed from my symptoms of postural headache. When I wake up I have no headache it is only when I am up and moving about.

Here is hoping I will get some treatment soon, I am also in the UK they don't seem to offer treatment so much here as they do in America. Was told I am to late for a blood patch.

Fed up with the pain
Regards Gill
__________________

[ebcet]

Age: 38
Gender: Male
Type of Leak: spontaneous/location unknown
First Sign of Leak: April 2009
First Diagnosed: April 2009, severe headaches when upright, unable to stand up, vomiting, tinitus, stayed in bed for several weeks
Brief Summary of Tests to date: Head CT, MRI/MRA Head,Neck & Spine w/&w/out contrast (diffuse enhancement of meninges), LP, 2 cisternograms (First test complete failure-3 needles dye injected improperly only determined 24 hours later, Seond test done with fluoro xray successful but leak not detected)
Brief Summary of Treatment to date: bedrest initially, 10 mL epidural blood patche (May 2009) felt much better, HA came back July 2009 got 2nd 10 mL EBP, taking topomax (50 mg 2x/day)
Current Symptoms: pulling on brain/neck, dull headaches 1-3 times/week on a bad week take excedrin to manage pain, on a good week only a slightly sore neck and don't take any excedrin
Current Status: trying to get appointment with Dr. Schievink in LA in December

Each day that I am upright is a good day