CSF rhinnorhea (nose) leak

[nancydrewbr]

Anyone had a sinus graft for a csf leak(rhinnorhea) with fibrin glue/gel foam?

I just had my second leak repaired with a graft via the nose. I had lots of csf leak symptoms prior to surgery and am 5 weeks post surgery and nothing has changed regarding the symptoms. :confused:

Just wondering if anyone has any knowledge regarding healing time and change in symptoms post surgery? And did your doctor have you on any special meds post-op or could you suggest anything to try and further the healing along.

Am trying to rest and not exert myself too much. Am worried while I still had the packing in my nose, that I fell on the ice and might have done something to dislodge the graft. :eek:

Any thoughts, or ideas?

Thanks,
Nancy Drew:)

[Edward]

Hello NancyD,

Just wanted to thank you for getting back to me on that other thread. I do not have access to a computer on the weekend so I am just responding now. I appreciate hearing from you about your situation. Since it took you 6years or so to get diagnosed, I suddenly do not feel so bad since I have only been at it for 15 months or so!

I sure hope this surgery of yours works. Please keep us posted. And once it does heal, please stick around the message board because we need people like you here to share your history!

Have a good day....Ed.
:)

[nancydrewbr]

Dear Ed,
Yes, 6.5 years to get a csf (rhinnorhea) leak diagnosed is a looooooong time. Symptoms really are debilitating.....and am hoping they start to vanish soon.

I will for sure keep you and the board posted and share whatever I can to help others get diagnosed and to recognize the symptoms.

Thank you,
Nancy D. :-)

[nancydrewbr]

Dear Cranial Nose Leakers,
Just tossing out some thoughts here, but before I was diagnosed with CSF rhinnorhea (nose) leak, the doctors diagnosed me with the following:

1. Mild Asthma (meds interestingly did not work), so I decided to do more testing and had a methaline sp.? challenge test. That came back negative, but the intial pulmonary tests showed mild asthma. Am now wondering if the leak, with this fluid constantly draining via my sinuses affected my breathing?

2. Acid reflux (Clearly the csf fluid could be irritating my throat,(barium swallow test confirmed this) with a low volume leak, and most of it going down the back of my throat, how can it not irritate it?) Meds didn't seem to work for this problem and the left side of my throat felt irritated all the time.

3. Low Sodium, when this first started almost 7 years ago, the first thing they did was a blood test. With this csf fluid having high sodium content and I was obviously leaking, I wondered if this blood test was a key factor and therefore was the reason" low sodium" showed up?

Just wondering if any of the cranial leakers had simliar results with tests? I think for sure my csf leaks affected my breathing, my throat, giving it the appearance of acid reflux and the sodium level in my intial blood test. Then I started to drink tons of water, I was always thirsty.Those interestingly enough were the only problems the 40+ doctors could ever come up with, and nobody ever mentioned a csf leak.

Any thoughts or ideas?

Thanks,
Nancy D.

[dagaz]

Hiy'all Some of you know me .... I have been a part of this site since it started... I can't remember how long ago that was. My leak started February '93... so it will be 15 years with CSF Leaks... I have had 15 Neurosurgeries... 9 were a attempt to repair the leaks... the others were for shunt revision(s), the first shunt was to try to divert the leaks... I have hydrocephally because my body became dependent on a shunt. I am a Rhinnorhea Leaker... I am through with the surgeries to try to repair the leaks...because it's just not working... My shunt well if it fails I will need more surgery... I'm keeping my finger's crossed that it doesn't fail again.

After any attempted repair try to stay laying flat, no exertion ( including bathroom duties) Don't bend over... if you have to have someone tie your shoes. Don't pick up any thing.. including your children! This doesn't take weeks... You have to give your repair a chance too heal which may take months...

Good Luck...

dagaz

[a real drip]

Hi Nancy Drew-

I was diagnosed with allergies and sinusitus before getting to the heart of the matter. Actually, I've been the one suggesting CSF leak to my doctors since last April, which was when I first started getting the symptoms (which initially led to pneumonia and 5 days in the hospital). But they kept insisting it couldn't be CSF leak b/c it mostly results from trauma or as a co-morbidity to surgery.

A few people have asked me why I would even consider CSF leak, rather than the other diagnoses. I ruled out allergies immediately b/c I don't have allergies, never have, and besides I was just dripping out of one nostril! Also, I used to be a health care editor. One of our clients was a neuroscience nursing org., and I worked on their journals and some of their clinical practice guidelines. I guess some of the info. stuck in my head (no pun intended). In fact, the other day I was researching lumbar drains online and came across a practice guideline on lumbar drains published by the organization I used to work for. As soon as I started to read it and look at the pictures, I realized I had EDITED the booklet! Pretty scary, considering that I remember thinking to myself when working on it, Oh, how awful. That looks really uncomfortable. Little did I know...

So how are you feeling, Nancy? Any relief yet? It's going on 6 or 7 weeks now since the surgery, right? If not, what's the next step for you?


Dear Cranial Nose Leakers,
Just tossing out some thoughts here, but before I was diagnosed with CSF rhinnorhea (nose) leak, the doctors diagnosed me with the following:

1. Mild Asthma (meds interestingly did not work), so I decided to do more testing and had a methaline sp.? challenge test. That came back negative, but the intial pulmonary tests showed mild asthma. Am now wondering if the leak, with this fluid constantly draining via my sinuses affected my breathing?

2. Acid reflux (Clearly the csf fluid could be irritating my throat,(barium swallow test confirmed this) with a low volume leak, and most of it going down the back of my throat, how can it not irritate it?) Meds didn't seem to work for this problem and the left side of my throat felt irritated all the time.

3. Low Sodium, when this first started almost 7 years ago, the first thing they did was a blood test. With this csf fluid having high sodium content and I was obviously leaking, I wondered if this blood test was a key factor and therefore was the reason" low sodium" showed up?

Just wondering if any of the cranial leakers had simliar results with tests? I think for sure my csf leaks affected my breathing, my throat, giving it the appearance of acid reflux and the sodium level in my intial blood test. Then I started to drink tons of water, I was always thirsty.Those interestingly enough were the only problems the 40+ doctors could ever come up with, and nobody ever mentioned a csf leak.

Any thoughts or ideas?

Thanks,
Nancy D.

[nancydrewbr]

Thanks for the posts!
It's 8 weeks post op and the symptoms haven't changed and am still leaking on the left side only. I have a gut feeling my fall on the ice ( and I wanted to be a ballerina!) shifted the graft/patch. An engineer friend explained to be that is entirely possible. Hit my knees with lots of force and then flipped over to my back, but luckily did not hit my head.

I guess it's time to call the doc and see what he thinks. He really wanted me to wait till it was totally healed ( 3 months, which is March 5th). If he could see my low volume leak when they tipped me down during surgery, I am sure he could identify this leak site with an endoscope in the office. He now knows exactly where to look.

Shall keep u posted, but with no changes, it's time to contact the surgeon and see what is next.

[momma g]

Hi Nancy Drew-
I want to first say that I am new to this forum. I only found it recently and before I read all of these posts - I felt so alone in this struggle. A csf leak is such a bizarre thing and something a lot of people don't understand. After reading and becoming a member, I have a new support system other than my encouraging family members. I have a new sense of hope.

Here's a shorter version of my story - I had a pituitary tumor removed on dec. 4, 2007 at St. Mary's hospital in Rochester (Mayo). You can probably guess that I had a csf leak shortly after. I went back into the hospital in my home town for a week with a lumbar drain, which I was told "almost always fixes the problem". Well, it didn't fix mine. One day after I got home from my second hospital stay, I had some more drips (right nostril) and it dripped every 5-10 minutes when I was upright.

With this big of a problem, my neurosurgeon wanted to do a transsphenoidal patch surgery within 2 days. He was really awesome about the whole thing - even gave me his home phone number if I had any other problems. When he was in doing my surgery, he did not see any leaks/tears. He commented that my dura was just "weeping" or appeared like it was "crying". He told me it was very unusual. Anyways, he packed it tight - stomach fat, fibrin glue, bone from my nose followed by some more stomach fat.

I am going on 5 weeks post surgery. About 10 days ago, I had just a couple drips (only about 4 drops a day) with a real metallic taste in my mouth. I had a feeling it was csf. I called my dr. and he at first wanted me to have the fluid tested for csf. Since it was such a small amount, I knew I would never be able to collect enough of it. He thinks we should just "wait it out". Now - I haven't had any other drips or the metallic taste in my mouth for about a week. I'm really hoping that it has healed on it's own. I started taking some really good vitamins with B12 (natural healing agent). I really can't say that it's helped or not, but I'd like to think so.

I have read (especially on this site) that the healing process is a long time, but if you are still dripping considerably then it appears that you may still have the leak. I would call your dr. I think that sometimes dr.s don't want to believe you may still have a leak because somehow they believe the unrepaired leaks reflect their surgical skills.

We seem to have similar problems with the csf cranial leak - especially if we both had the transsphenoidal surgery approach. Do you have any other symptoms or is it just the dripping? My dr. did imply that I would/could have some rhinorhea from the surgery that might last awhile, but I don't know that it would last 2 months...However, I do still have a runny nose.

If I were you, I would contact your dr. and just see if he still thinks you should continue to wait until March 5th. If he knows you are still dripping and that you fell, he might want to see you.

Let me know what you decide and what they outcomes are - I'll continue to pray for you and the rest of the chronic leakers...

[nancydrewbr]

Hi Momma G,
Welcome and thank you for your note. I called my doc today and they had me email a note, the nurse was great as she will make sure he gets the story straight. I started it with my fall on the ice. Surely he might be suspect that the graft shifted and will get me in prior to March 5th. It's the same slow drip, starts later in the day and leaks when I bend. It's the symptoms that are so disabling. I have chronic inflammation, most likely from the site (post op labs verified this), tinnitus so loud, facial numbness, headache, sore/ neck .All symptoms on left side. It's mainly the burning inflammation that seems off the pain charts. I deteriorate as the day goes on.

I am sorry to hear of your problem, but sounds like you have a wonderful, caring doc and that you are on the mend. Welcome and hope you mend fast too.

Shall keep u posted, and thanks for the prayers, Momma G.
Nancy D.

[nancydrewbr]

Hi All Cranial Rhinnorhea (nose) Leakers,

Guess the doc decided that 9 weeks post op (2nd csf leak site surgery) and still leaking with same symptoms was enough time to evaluate whether or not the graft worked on the csf leak in my cribriform plate.It may have worked, but I also know I might have dislocated it since I fell on the ice and took quite a fall 5 days post op. What bad luck! We also know that this type of surgery has a fix rate of 90% first surgery, 97% second surgery and 100% surgery third surgery via your nose.I know my second smaller site was worse/location, location, location and probably more inflamed because of the almost 7 years it has been leaking.

Got a call on Friday and I am to be scheduled for another CSF leak study in Nuclear Medicine. They mentioned a two day study with the pledglets, but I know from the last lumbar puncture/cisternogram that I was able to detect a funny taste from the Indium in about 4 hours which was done at another hospital. I know some of you have done these tests without pledglets and also used a tilt table and gone home in six hours or so. I guess with a low volume leak, they are thinking that I might need two days to show I am leaking. I think I am leaking more than they realize, because not only can I tip my head late at night and one drip will trickle out of left nostril only, but a lot of the fluid is going down the back of my throat. 2nd leak is in posterior of cribriform plate and therefore I think it sends this csf (salty) fluid down the back of my throat.

It's not the drip that is so bothersome but the horrid symptoms. The burning/inflamed feeling is the worst, it feels chronically inflamed and only on the left side of my throat and refers out to my left ear. This leak is feeding the symptoms, just keeping them going. Interestingly enough, I think I told you all I got diagnosed with acid reflux, but on one side of my throat. Hmmm....I don't have reflux!

Just keeping you all posted, waiting for that call this week to get scheduled for yet another test the following week.

Thanks to you all for ideas and information, I am much better informed since my last lumbar puncture/cisternogram csf diagnosis in July, 2007, when I had to go finding info on my own and oh yes, diagnosing myself. Where are Dr. Oz and Dr. Gupta when you need them most???

Sharing one's experience is a valuable tool!

Onward to the Department of Nuclear Med, and will for sure keep you all posted.

Best wishes,

Nancy Drew :-)

[LauraL840]

Make sure you ask for plenty of warm blankets! I remember when they had my DH at nuc-med .... it was freezing! They say it has to do with keeping the crystals in the imaging equipment from shattering, but I think they like to torture patients ::wink wink::

My Dh was the patient and I was the one who needed warm blankets! :D

[a real drip]

Hey Nancy-

I found an article about CSF rhinnorhea that describes the difference btw. radionuclide cisternogram and CT cisternogram. Here's an excerpt, followed by a link to the article:

CT cisternography with metrizamide introduced intrathecally is more accurate, and its reliability and usefulness in localizing CSF fistulas has been documented in numerous studies. Metrizamide is a nonionic, tri-iodinated, water-soluble compound that was first used in the early seventies as a contrast agent for myelography and ventriculography. Chow et al (1989) studied 13 patients with Metrizamide CT cisternography (MCTC) to localize the site of a CSF leak. Seventeen studies were performed, and 13 identified the site of the leakage. Nine scan results were confirmed surgically and the other four were performed on patients who refused surgery. Fifteen scans were performed in patients with active leaks, and 13 were positive. Visualization of metrizamide passing through a bony defect is irrefutable evidence of a CSF leak. The combination of a bony defect with extracranial metrizamide adjacent to the bony defect can also adequately define the leakage site. Extracranial metrizamide within one sinus or in a focal area at the base of the skull may not precisely delineate the leak site, but does help to localize it. Intra nasal pledgets can also be placed in the nose and examined for the presence of contrast.

http://www.bcm.edu/oto/grand/120398.html

It sounds as if the author prefers CT cisternogram over radionuclide study to actually locate the leak sites. And the CT cisternogram appears to have a higher reliability rate.

Although I am not a health care practitioner, I'm wondering if it couldn't hurt to ask your doctor what the advantage is of radionuclide cisternogram over CT cisternogram? Personally, I would much rather have metrizamide, which is "nonionic and water-soluble," injected into my spinal column than radioisotopes. It doesn't hurt to ask, right?

In any event, please do keep us posted, OK?


Hi All Cranial Rhinnorhea (nose) Leakers,

Guess the doc decided that 9 weeks post op (2nd csf leak site surgery) and still leaking with same symptoms was enough time to evaluate whether or not the graft worked on the csf leak in my cribriform plate.It may have worked, but I also know I might have dislocated it since I fell on the ice and took quite a fall 5 days post op. What bad luck! We also know that this type of surgery has a fix rate of 90% first surgery, 97% second surgery and 100% surgery third surgery via your nose.I know my second smaller site was worse/location, location, location and probably more inflamed because of the almost 7 years it has been leaking.

Got a call on Friday and I am to be scheduled for another CSF leak study in Nuclear Medicine. They mentioned a two day study with the pledglets, but I know from the last lumbar puncture/cisternogram that I was able to detect a funny taste from the Indium in about 4 hours which was done at another hospital. I know some of you have done these tests without pledglets and also used a tilt table and gone home in six hours or so. I guess with a low volume leak, they are thinking that I might need two days to show I am leaking. I think I am leaking more than they realize, because not only can I tip my head late at night and one drip will trickle out of left nostril only, but a lot of the fluid is going down the back of my throat. 2nd leak is in posterior of cribriform plate and therefore I think it sends this csf (salty) fluid down the back of my throat.

It's not the drip that is so bothersome but the horrid symptoms. The burning/inflamed feeling is the worst, it feels chronically inflamed and only on the left side of my throat and refers out to my left ear. This leak is feeding the symptoms, just keeping them going. Interestingly enough, I think I told you all I got diagnosed with acid reflux, but on one side of my throat. Hmmm....I don't have reflux!

Just keeping you all posted, waiting for that call this week to get scheduled for yet another test the following week.

Thanks to you all for ideas and information, I am much better informed since my last lumbar puncture/cisternogram csf diagnosis in July, 2007, when I had to go finding info on my own and oh yes, diagnosing myself. Where are Dr. Oz and Dr. Gupta when you need them most???

Sharing one's experience is a valuable tool!

Onward to the Department of Nuclear Med, and will for sure keep you all posted.

Best wishes,

Nancy Drew :-)

[nancydrewbr]

Thank you both for the info...the warm blankets sound like a superior idea! It is still snowing here in the Northeast! And, I will be reading the links you sent "Real Drip".

Always a good idea to go in with questions and try and understand the lingo, since I have found that most docs think that all of us have had at least one year of med school. Does online reading count? Last time I had to take meds for the anxiety pre lumbar puncture, but know better to be horizonatal post procedure and maybe get some caffeine for the possible headache. Nobody gave me any post procedure advice and I ended up in the ER.

A VENTI CAFFE LATTE, or a least a Pepsi packed into my purse should do the trick!!!

Best wishes,
Nancy Drew

[LauraL840]

Thing is, you can have BOTH tests done at the same time, and this really is what you should be pushing your doctors and neuroradiologists to do.

With ONE lumbar puncture you can have both the CT cisternography and Radionuclide cisternography done. It does require planning in the radiology department so you should ask! The advantages of doing both are clear in patients who have slow or intermittent leaks. Radionuclide imaging will MOST likely detect a slow or intermittent leak, but will NOT give precision as to location. CT cisternography or myelography can show you precisely where the leak is so long as the leak site falls into the 'slice' or 'cut' that is imaged, AND SO LONG as you are actively leaking at the precise moment the equipment captures an image! Make sure they are using 1 mm slices, not 3 mm. MANY MANY more pictures made, and way more likely to pick up a leak location.

Radionuclide is like seeing the haystack and recognizing that yes indeedy there's a needle in their somewhere! CT is like finding the exact location of the needle and being able to read the manufacturers name stamped on the side, IF AND ONLY IF, the 'camera' takes a picture where it's located .... otherwise you have great shots of a haystack and still no needle!

Just a PS on technical-medical-ese .... cisternography (regardless of whether it involves CT, MR, or nuclear) refers to images of the basal cisterns or for us 'self-educated' doctors, the head/brain. Myelography (again regardless if CT, MR, or nuke-med) refers to images to the spine! If you aren't sure WHERE your leak is located, you need BOTH a CT myelogram and cisternogram. In nuclear (UNclear) medicine, the images taken of the spine are not called a myelogram, they are called a scintogram.

One would think that radiologists would recognize that CSF leakers can leak anywhere from head to hiney :p (had to borrow that one, it was too damn funny) and therefor image from head to hiney, but they DON'T! When Dh went in for his nuke-med images the technician did all head images, when I asked why they weren't imaging spine she said 'no one leaks from the spine' @@ WHAT :eek: TO HECK they don't! At any rate, when his doc found out that they hadn't done spinal images they sent him right back down to nuke-med for the spinal images .... funny, she didn't have a word to say except to have ANOTHER technician take his spinal images. :rolleyes:

Nancy - since you KNOW you leak from the head and you KNOW you have a leak (confirmed by prior surgeries and imaging), then a NUCLEAR study won't be very informative. Make sure they are using CT imaging (some places will do MR imaging in much the same way as CT). It sound like they are planning only a radionuclide cisternogram, but you'd be better off with the 1mm slice CT, it will give them a much more precise picture of what your fall on the ice did to the patch. If they balk, please go through the many links to articles posted about imaging under the thread :Useful Websites (http://brain.hastypastry.net/forums/showthread.php?t=1665). I can promise you if you 'wade' through articles on imaging you'll find several you can print and give to your doctor. If you have email contact with his office, you can send them the article AND the website address. It would be a waste of both yours and their time and money to ONLY do a radionuclide cisternogram! The fact that they (according to the article Real Drip quoted) can use pledgets to check for the CT contrast agent would also be helpful or useful information to pass on as well!

[a real drip]

All I can say, Laura, is... YOU GO, GIRL!!! :D

[sadlisa]

Laura,

I don't know for sure if I am leaking or not but will have my studies to look on Feb. 12th. I am getting the myelogram and cisternogram done together. Is the dye for the myelogram and CT cisternogram the same? I don't know if the cisternogram they have ordered for me is CT or radionuclide. I am making a list of questions to ask this week. I want to make sure they understand where my concerns are. I am tired of the mistakes they have made in the past and I know they don't do these scans very often. I feel a little better this time around because they have involved the neuroradiolgist. I will ask to see him if things don't seem right. Thank you for sharing your understanding of all this. You are awesome! Thia

[LauraL840]

Thia,

Yes, a single dye is used for the CT myelogram and CT cisternogram. It will be done with an LP. However if you are having a CT myelogram and a Radionuclide cisternogram, they will inject two different materials through your ONE LP. The CT imaging uses a DYE or contrast agent, the Radionuclide imaging uses a TRACER or radioisotope (there are too many technical terms and lay terms and slang terms for all these).

You might just call and ask for the specific TECHNICAL name of what tests you are having done and which imaging department they are being done in. Don't let them say 'well it's just a cisternogram' or give you some jargon mumbo-jumbo, ask them specifically ...
am I having a CT myelogram and a CT cisternogram?
or am I having a CT myelogram and a radionuclide cisternogram?
are they planning on doing a CT post-myelogram as well?
if they are doing a radionuclide cisternogram, are they planning on doing a radionuclide scintogram?

Do you see what I mean by specific? LOL

Find out soon if you can, then you can post and all us goobers can give you opinions, advice, helpful articles, tips, etc.

[okleaker]

(Keeping with the spirit of awards season)
On behalf of the csf leakers of the world, we are pleased to announce that the 2008 Leaker's Advocate Award goes to......LauraL840 for her endless knowledge and tireless research to make all of our lives better!!! (applause, applause, standing ovation)
Seriously, I just wanted to tell you that since the first doctor mentioned csf leak to me in May 07 I've seen 6 different doctors and I've learned more from you about this whole issue than I've learned from the 6 of them combined!!!
So I just want to say thank you from the bottom of my heart for all you do.

[sadlisa]

Laura,

I have left a message to the special procedures dept. I am scheduled to have scans done in the nuclear medicine dept. I don't know yet if it includes a regular CT. I hope it does as they didn't do the post myelogram CT last time and this is the reason I have requested to have it redone. I do know they are trying to schedule to have the pledgets placed in HNS and to have blood drawn. I will be sure ask if the scintogram is to be done as well. Boy I tell you there is a lot of confusion with all there is to schedule. Thanks. I'll post my details when they are given to me. Thia

[LauraL840]

Thanks for the sentiment okleaker! I wish I didn't know so much about leaks, but then again, every time someone 'new' shows up on this board I wish they didn't have a need to be here!

One of the BIGGEST lessons I've learned throughout my husbands' leak is that leakers (spinal and many cranial) hurt all the time and constant pain is a disability in and of itself. My husband hasn't read an entire book in 18 months (unless he had to for work), he hasn't had a really restful nights' sleep, and he's only had four full days without a headache and a few minutes here and there in 18 months! He can't sit here and research, wade through facts (and fiction - you wouldn't believe the medical sites I've read with incorrect information on them), it's all he can do to make it through most days.

I, on the other hand, am a stay-at-home mom who is passionate about my husband. He's the head of our home, my rock, my future, the glue that binds our family together ... Next to God my husband is my everything, and I can't bear to see him go through this without TRYING to help. I have a lot more time on my hands to research and I'm predisposed to being a research nut anyway.

I get diarrhea of the mouth, but I just wanted to say I appreciate your post, I just wish I didn't know you! :D And I want everyone here to know how much their encouragement means (and has meant) to me. This board has been such an awesome place of support, sanity, camaraderie, encouragement, education, etc. If ANYONE in the medical community would take the combined experiences and knowledge based in experience from this board, they could re-write medical history for future leakers! There's a collective of experiential based knowledge that exists on this board that can match no other! I just wish someone like Dr. Schievink or Dr. Mokri had the time to read and make useful all these experiences! Seems like, with all the current technology, that CSF leak information/ diagnosis/ treatment/ imaging should be in the hands of every doctor. Too bad it's available ONLY IF they go looking for it! Not enough doctors (IMNSHO) are willing to learn anything from their patients!

[nancydrewbr]

Thank you Laura, for all your help, with my head hurting, I can hardly keep this all straight. They haven't called me yet to set it up, so I still have time to try and figure this out.

Last time when I got diagnosed for my low volume leak, I had pledglets placed, lumbar puncture and Indium injected in my spine.Then I was taken to a room for CT cisternography every few hours and did this all in one whole day at the hospital. So I take it I had Radionuclide cisternography (Indium injection in spine) and the CT cisternography(photo shoot with pledglets/Indium) was done at the same time???? Does that sound right?

Then they called me and told me I had leaks the next day. After that to confirm the leak sites they did the 1mm thin CT cuts with NO injection, etc. It was just this 1mm thin cuts CT scan. That pretty much diagnosed the areas and the defect/fractures in the cribriform plate were confirmed.

He also did an MRI with gad. injected in my arm as he wanted to make sure the fracture sites did not herniate into my brain. They hadn't thank goodness.

So does this sound right?

It sounds like I need one test to show if the leak is still active and the graft dislocated and the 1 mm thin CT scan to show if there is still a fracture site. Then they use the two together, like they did before.

The nurse that called me did not go into too much detail except to say I would need pledglets, lumbar puncuture and perhaps a couple days to devote to the study. If they get going early enough, I will start leaking early and won't need these pledglets in overnight, but I had better go along with the two days if that is what he wants...so they see the trickle.

Thank you...I am so tired and my head hurts and am totally bummed that these two surgeries did not change anything, still I think I am at a really good hospital and the doc thinks it's fixable. Chin up...appreciate everyone's advice and help.

All the best to you and your husband,
Nancy D.

[nancydrewbr]

*forgetmenot*forgetmenot*forgetmenot

Thank you Laura,
From all of us New Members!

*sevendwarfs

[a real drip]

Ditto, ditto, ditto! I am very grateful to you and everybody else here.

Hey Nancy! You passed the threshold from newbie to full-fledged Community Member. How do you like them apples?! (my favorite line from Good Will Hunting--remember it?)

*forgetmenot*forgetmenot*forgetmenot

Thank you Laura,
From all of us New Members!

*sevendwarfs

[sadlisa]

So as it goes another potential screw up. Talked to the special procedures and it sounds as if only the radionuclide study was ordered. She said from her understanding they would check the spine with this too. I told her my neurologist wanted both studies to be done at the same time and that I feel I need the CT myelogram done as it is the one that will show the leak site. I asked her if I need to talk to the radiologist in charge of this study to make sure it is done right. I have already had it done wrong before because too many people are involved. She is going to talk to my neurologist to make sure before my tests are run.

You are soooo right Laura about making sure! Nancy, Ask the questions even though you know where the leak sites are! You have two, maybe there's another. Thia

[nancydrewbr]

Thia,
Thanks, yes, I totally agree, I will ask and make sure they are covering all bases here. It's so hard, especially when you are doing this solo and you haven't got much energy and have to be your own advocate, otherwise you continue to suffer.

Sometimes I wonder if I have otorrhea, csf leaking from my eustachian tube, as that whole area seems inflamed and I have a difficult time equalizing pressure. It might just be that this posterior cribriform leak is flowing past my eustachian tube(little tube that connects your middle ear to your throat to help equalize pressure) therefore inflaming the entrance and affecting function and my hearing too.

Still when they placed those pledglets, I think they would have been able to tell. Another thing to ask them! Oh, they are going to be real tired of me with all my questions. But am with you and Laura and the team to make sure they do everything once I get in for these tests.

From stem to stern, will have them check it out! I am sorry you are having such a difficult time, but forge onward. We have lots of good people on the board to help with thoughts and ideas!

Take care,
Nancy D.:-)

[nancydrewbr]

Well batter up! I am deck for Nuclear Med tests on Monday/Tuesday!

Talked to the head tech and they have me down for a radionuclide cisternography, with pleglets for 24 hours. I talked to him about the CT cisternography and this test is best with active leaks, but intermittent or slow leaks may not be identifiable so they are going with the test I had done previously that I had luck with. They have done so many tests prior to my two surgeries to show the leaks, that they know where they are, it's just a matter if this graft shifted/dislocated, shrank or I did something when I fell on the ice. They have lots to compare this test with on hand, so am hoping they can solve my continued leak problem.

After surgery I got my post op notes and they visably saw my slow leak site, when they tipped me down and also invoked some kind of valsalva maneuver. It was very clear to the doctor where my slow leak was coming from. Later he mentioned this smaller leak seemed more problematic and as I mentioned before, my post op tissue labs came back "chronic inflammation" and I feel that way 24/7.

Not looking forward to the lumbar puncture, but thanks to "Real Drip" she mentioned she has a Floroscope to identify the precise insertion point and that was somthing he said they use when I told him my saga of the lumbar puncture :):):)Ahhhhhhhhh, such relief....I think he called it a floroscopy. That was the worst part for me, so a big relief to know and understand that I can hopefully run these bases and slide back to home in one piece. ;)

"Real Drip" thank you for that info!*coffee*coffee*coffee*cookie (I know you need caffeine for that headache!)

I've been leaking for 7 years on Feb. 7th, but this will get solved.It's the low volume leakers that have a very difficult time of convincing the docs what is going on and so they send us off on a wild hunt *rodeo on our own.

Am hoping that all this info sharing will help others get diagnosed too, for that is more than 50% of the problem.

All the best,
Nancy D. and the Mystery of the Leak , Vol.II ;)

[okleaker]

Nancy,
I will have my fingers, toes and anything else I can crossed for you Monday and Tuesday. I'm sure you will look completely adorable with those strings taped to your face. My hubby said I looked like a cat. Good luck and best wishes!
Michelle

[sadlisa]

So happy your doctors are moving this ahead fast. I wish I was as lucky. If this is my problem, my 7 year anniversary will be Feb. 4th. That is when I got meningitis. I believe getting diagnosed is more like 90% of the problem. Once you are diagnosed it may be difficult to fix, but at least you are finally believed and not treated like a hypochondriac. I will be sending my good thoughts your way too. The best always, Thia

[okleaker]

So happy your doctors are moving this ahead fast. I wish I was as lucky. If this is my problem, my 7 year anniversary will be Feb. 4th. That is when I got meningitis. I believe getting diagnosed is more like 90% of the problem. Once you are diagnosed it may be difficult to fix, but at least you are finally believed and not treated like a hypochondriac. I will be sending my good thoughts your way too. The best always, Thia

Oh Thia, I feel your pain and frustration. Unfortunately a positive cisternogram doesn't mean that you won't still be treated like a lunatic as was my case. I had a positive test in July 07 and then when I saw the surgeon who was supposed to fix it he couldn't find the leak with ct scans so therefore he still doesn't believe I have a leak. He then started discrediting the accuracy of cisternograms and sent me on my way with nothing. Then my neuro who diagnosed the leak in the first place left the state and I've had extreme difficulty finding another neuro to take my case. My pcp finally found a neuro who would take me but it's taking 4 months to get in to see him. The truly frustrating thing is that he will probably just refer me to someone else but no ns would see me without a neuro referral. This whole situation just makes you want to scream but we can't do that b/c we would then get a headache.
Just wanted you to know that I can relate.
Best Wishes
Michelle

[a real drip]

Nancy, I've already PMed you, but want to say publically that I am soooooooo happy you are getting the attention you deserve. To live with these symptoms for almost SEVEN YEARS is unfathomable to me--especially in such a significant university teaching hospital town like where you live!!!

It's OK to be the squeaky wheel! I encourage you to keep advocating for yourself! With your help and Laura and everybody else's encouragement, I have "secured a berth" with the best CSF leak surgeon in the Midwest! We ALL deserve nothing less. You are so worth having the best of care. I hope you remember that as you continue to navigate your way through these maze-like health care systems. And know that I am here for you in any way I can be--although after next Tuesday, I'll be offline for a while. ;)

I have a good feeling that you are about to have a major breakthrough in your quest for a cure. May God bless and keep you. I'll be thinking of you Monday, picturing you with "cat whiskers." :p

[sadlisa]

Michelle,
I guess you are right about finding a doctor who will deal with difficult cases. They just aren't paid by the insurance companies for extra time. So why would they want to spend their own personal time to work with a difficult case when there are so many who they can help in the time allotted. It is easier to pass us off to someone else. It is a frustrating thing. I guess we need to find the doctor who wants to discover and keep on learning no matter what it takes. Good luck with your next appt. I hope he/she will move things along and you will get fixed! Thia

[nancydrewbr]

*blackcat2

Thank you all for posts/notes and well wishes! The tests on Monday will hopefully confirm what they found out from last summer, that I was in fact leaking csf fluid from my left nostril( two different areas) for 6+ years. I had a slow, low volume leak.

I have had two graft procedures, but the leak is persisting. It almost seems worse. I am only guessing that without that inflamed tissue in the area, almost stopping the leak, that it seems to drip more. It still is a very slow, low volume leak. I am not "gushing" as the docs said.

So we are concerned that perhaps the graft, dislocated, ( I fell on the ice 5 days post op), shifted, shrank....or something else happened. Am also aware that these graft procedures sometimes need to be repeated, but the leak is obviously there and the symptoms persist.

By the way in case you all hear this one, but read that the cotton pledglets they insert prior to the lumbar puncture are sometimes called "cottonoids". I got a chuckle out of that one.

Well, will know more after Tuesday, as this time they are leaving pledglets in overnight for 24 hrs., perhaps a better idea for you slow volume, low level leakers.

Shall be looking like a cat with those strings hanging out, just wish it was Halloween, cause it looks rather strange for February.;)

Thanks for the posts, am sure this is going to confirm things and then on to Plan B. Shall keep you all posted!

Nancy D. *scarycat

[nancydrewbr]

This symptom list, was one of the best lists I have seen for CSF leaks, however, I would add the following:

*Leaking nose (can be either a slow trickle of a drip/low volume leak to much greater) Often misdiagnosed as a sinus problem and not picked up by regular CT scans. I only leak from one nostril.

*Neck stiffness

*Inflamed feeling (face/cheek, ear and head)

*Tired

*Excessive thirst


http://www.nyp.org/health/cerebrospinal-fluid-leaks.html

I found I had most all of these symptoms, (except vision problems) but have heard that a CSF leak can affect people differently, so a combination of these symptoms is quite possible. Interestingly enough, I had experienced the tingling in my arms and legs, but the symptom list was soooooo long, that I never mentioned that to the doctor, as that was nothing compared to the "burning" headache,/pressure, tinnitus, neck pain/stiffness, and referred ear pain/earache. This has all been on one side of my head, and the other side is completely fine.

Hope this link helps!

Best wishes,
Nancy D.

[nancydrewbr]

Just updating my last notes...went through lumbar puncture/pledglet/cisternogram test for 24 hrs on Monday to test in fact if I was still leaking after a confirmed leak last summer and two graft surgeries to fix two different leak sites.

I am happy to report that the test shows I am no longer leaking. This is the best news, however, I am having a difficult time with the symptoms that seemed to persist since my surgery 10 weeks ago. (see above symptoms list, as I have most of them) Nothing has changed, still having the headache, pressure,burning inflammed feeling left side only where the leak was, facial pain, tinnitus and neck pain. I guess they want this to try and heal on it's own, but am wondering if anyone had any experience as to what might work or not in terms of relieving the symptoms.

Is this the point at which a Neurolgist should be stepping in to help those nerve signals to calm down after years of "chronic inflammation"? I understand the surgery plugs the fracture/defect site where the csf fluid was leaking, but what is best with dealing with the inflammation problem here? I have been told they don't want to use steroids which might shrink the graft patch placed and therefore put me at risk for a reoccuring leak.
But, will the healing take place while I am in a chronic state of inflammation? Just feeling like something has to kick this and telling me that it's fixed isn't helping when something is clearly firing this pain signals!!

Any thoughts, suggestions, I need help with this one?

Thanks ever so much,
Nancy D.

[nancydrewbr]

After having csf rhinnorhea leak for 7 years, I am now supposedly healed, according to the test. I am still having left side slow leak despite their telling me I am healed. Go figure!

Just a question, but does any of the rhinnorhea leakers, have eustachian tube dysfunction? I think I have major eustachian tube dysfunction and that could be alot of my remaining problems.It's like the tube is swollen and not functioning well, also lots of crackling and pressure feeling. Cannot use steriods sprays or steriods to get the inflammation down, as they don't want to shrink these graft patches, so am for now doing saline rinses only. After surgery my post op labs came back as "chronic inflammation" but the doc said he removed the inflammation. I don't think so, doc! Actually he most likely created more, and things just aren't calming down on their own.

Any thought or ideas from any fellow leakers? I feel no better post op and this is making me sad. Quite simply I am most likely left with a dysfunctional eustachian tube, because this did not get diagnosed for so long. My right side of my head is just perfect.

Thanks,
Nancy D.

[LauraL840]

If you're still leaking on your left side (which I suspect is true and has been all along since your fall), the leak could be causing this eustachian dysfunction and causing the inflammation response to continue despite what the surgeon said he removed. I understand and agree about the topical steroids but what about doing a 10-day blister pack of prednisone? Is that a possibility?

Not sure what to tell you! If what's leaking doesn't heal on it's own, you're going to be left trying to convince them you're still leaking despite their 'opinion' that you aren't! YOU KNOW YOUR BODY! :D

[nancydrewbr]

Dr. Laura;);)
Yes, agreed, I am sure the csf fluid if still leaking could keep this old e-tube inflamed. In the meantime I am doing the saline rinses and instead of letting it always flow out my nose, I am kind of swallowing to the back of my throat and then spitting it out so it flow pasts the scene of the crime.:eek: It's crackling more, so , but when I see this ENT surgeon, who is soooooooo sure I am not leaking, I will talk to him about trying the steriod pack to get this inflammation down. Also doing stem inhalation, with boiled water, and towel over the bowl, to get my sinuses to drain better. I just feel like my one ear on the side of the leak needs to explode open!:eek: It's so sore feeling.

I am not sure WHY:rolleyes: but why don't these docs get it, that although they "think" your healed that you don't have chronic inflammation after seven years and post op labs showing this. I never have heard of doc "removing inflammation" during surgery as I was told. I am smart enough to know that surgery most likely created more. So far,very disappointed in my post op care. I was given nothing except antibiotics for 7 days. Go heal on your own, is the way I feel.:(

In hindsite, I had wished I had moved more during my pledglet study, because my left side was leaking through the cotton as I exited the hosptial. It was so convincing!!! I thus hit the sofa to rest, as I was worried about the LP headache that put me in the ER the last time. I asked for the two tests, but as I said ,try telling a doc at a large teaching hospital that thinks this test is the gospel truth. Once again, docs really don't know about csf leaks or in denial that they can happen.

I go back March 5th and will talk to him about steriods and see if I can find articles to give him to read that dispute the tests 100% reliability. Ahhh, this is so frustrating. I should have stayed up all night and moved a lot to make sure the grafts weren't leaking. It's because of the slow leak that the Neurosurgeon really proceeded with the tests to get all this diagnosed.

The only other option if this all persists is to treat this as eustachian tube dysfunction and try something for that called the Microwick. It's direct application of antibiotcs and steriod drops via a wick though the ear drum to treat the problems of chronic eustachian tube dsyfunction. A wonderful invention, but not sure if it can be done because of my stapedectomy.

It's funny, but my body is telling me I need this...it sounds so soothing. Oral steriods I am not sure will treat the scene of the crime. I am sure it's a swollen tube and it's mad:mad: because it's been inflamed so long.

Well am trying to move along and will stay on these neuro-pathic pain meds and treat the little old e-tube with my home remedies.

Shall keep you all posted and I thank you for your thoughts. I am committed to getting this fiixed, so I can share helpful advice.

Thank you,
Nancy D. :cool:

[Tamara3]

Hi Nancy (and anyone else who could help!), I am new to the site and have been reading your symptoms and experiences. I am so sorry that you are going through this, because I know what it feels like. I am three weeks out from a second attempt to repair a leak from my spenoid sinus (they think). My doc used a piece of muscle from behind my ear and fibrin glue. First time I ended up with the stomach bug and you can imagine what happens when you throw up post op. . .wasn't pretty. But this second time I've been very careful and ended up leaking the minute he took the packing out. Sorry for the long story, but yours prompted a question . . . Is it possible to still leak after the surgery and then have the leak stop as it heals over time or is leakage an automatic sign that the repair did not work? I've been packed twice this time and was ok for a few days and then started leaking again just this past Thursday (Happy Valentines Day to me!) My doctor was not in Friday or today so I have to wait to speak to him. From reading the discussion threads, I realize that I have had very limited testing (only 3 CT scans) and my doctor, whom I trust, was very honest with me when he told me he wasn't 100% sure that this would fix the problem, as he is not 100% sure that the leak is coming from that area. I am hoping someone could get back to me with any ideas, encouragement, direction, etc. Thank you and I wish everyone the best of luck!

[sadlisa]

Tamara,

You have found the right spot for your questions. Have you been checked for beta 2 transferrin. If you are leaking a lot and can collect some it can be tested. If you have a fracture in your sinus it is not necessarily the point of the leak. A CT myelogram or cisternogram may be a way of finding the true leak point. I have read that sometimes it can take 2-3 times to fix a leak. But maybe someone else on this board has experience and can respond to that question better than me. I wish you luck as well, Thia

[Tamara3]

Hi Thia, Thanks so much for your quick reply. Yes, I've had the beta 2 transferrin test. I am very fortunate to have an ENT who listens to me and took me seriously on my very first visit. He believes me when I tell him I'm leaking again but I'm not comfortable with his "I think it may be here" approach. I would like to find exactly where it's coming from and stop it. We're working on the assumption that it was caused by sinus surgery I had done back in '03 by a different ENT. Thank you for the info on the other tests. I will ask him about them and maybe that will give us a better idea. Thanks again!

[nancydrewbr]

Hi Tamara,
The best tests that the Neurosurgeon diagnosed me with, were what Thia mentioned, betta II transferrin (I could not get enough drops, so was inconclusive), Radiolucide Cisternogram, showed him I was leaking and they had an idea of the areas but weren't sure, so they did the CT 1mm thin cut slices. Normal CT scans did not pick it up. The ENT surgeon also had an MRI done to make sure the fracture defect site did not herniate into my brain, which it hadn't. He also had a CT done so he could use a GE VTI headset on me to really located the leak sites. I had one repair in August, 2007, which was the larger one and one Nov, 2007, which was the smaller one, but the most problematic according to him. I think the location was difficult and it looked worse, both had "chronic inflammation" for post op labs. I should also note that the big clue for me was a CT scan of my sinuses that picked up that I had a "slight thinning of the sella". This notation got me to a Neurosurgeon and was a big key in the diagnosis as this leaking fluid was thinning the sella area. I think that is your skull base!

It is not uncommon for the docs to have to go in and do surgery again. The most common reasons were the patch did not adhere or got dislocated, the actual site was not located, or the patient did not follow post op instuctions. The fix rate is about 90% first time, 97% second and 100% third. If this doc has not really located the spot, I am not sure how he patched it, just by guessing? I got my post op notes and will be happy to share the procedure with you. During surgery, I know they tipped me down to see the leak and also made sure a valsavla maneuver was performed. The doc was able to see the csf leak out, so it was easy for him to locate it and do the patch. I fell on the ice, 5 days post op and so I thought I had dislocated the patch. I just had a repeat radiolucide sp? cisternogram and they said the "leaks are sealed" If that is the case, then I have a sinus infection or eustahian tube infection. I am persisting with symptoms and so have had to see a Neurologist who put me on meds last week for neuro-pathic pain. I think I am having major eustachian tube dysfunction most likely from seven years of docs mis-diagnosing me from UPSTATE NEW YORK down the East coast.

I am not sure if the leak can heal over...I think what can happen is that the area can become inflamed and thus looks like the site is closed and has stopped leaking, but it may not be as it's just the inflammation holding the drops back until you have those postional changes, just like it most likely was prior to surgery. "Dripless in Chicago" might know more about that as her leak was in her sphenoid area also.

Just a question but how does he know that these drips are actual csf fluid and not just rhinnitis? I am still dripping the one side only and it's not csf fluid according to the tests? The nurse said I most likely have rhinnitis...hmmmm, not so sure about that. Why can't these docs tip you down pre-op, have you valsalva and get an endoscope to see if they can view the leak site. If they can do it with you asleep, can't they do it while you are awake???? Just a thought.

Sorry you have had to go through this, I think docs really don't know how miserable one can be. I am from Upstate New York, so I do hope I can help you. I see my surgeon on March 5th and will go over things with him then. In the meantime I am just trying to recover.

Keep and touch and let me know how you are doing.

Still dripping after all these years,
Nancy D. :)




[

[CanadianCath]

Hi Nancy,
I realize when I asked about surgery that this thread was you! Boy...have you ever been through the wringer! I hope you're feeling better soon and that the fall only presented a temporary setback.
Cath

[nancydrewbr]

Hello fellow nose leakers,
I am off to see my ENT surgeon on Wed., March 5th. It's my 3 month post op surgicial review of my grafts! So it will be interesting to hear what he says.

Still having major sinus issues! I just posted on someone's thread that this csf rhinorhea leak of 6.5 years has disturbed the ventilation, and impaired drainage. Areas that are normally aerated have been obstucted by the prolonged inflammation and obstruction, so I do believe that steroids and antibiotics are in order. Once and awhile I still have one lonely drip leak out of one nostril. Is that a leak or rhinnitis??? My post op labs from tissue taken at the time of surgery say "chronic inflammation and abundant rare eosinophils". But, I was told that the "doc removed the inflammation". They have got to be kidding! These eosinophils supposedly increase with infections or asthma. Since this all started after living in Brazil and having some horrible colds, I am betting that I have a nice little infection brewing and it needs help to kick it. I just feel so clogged up and of course am having a very difficult time getting the eustachian tube to function properly. Am hoping forr the best, but if not, I have an infectious disease doc that perhaps can attack this and get me on the right meds. They just love taking samples and culturing things.Moral of story is always have a back up plan, so you are not putting all your eggs in one basket. I cannot tell you the tears and frustration I have had after leaving docs offices time after time and then saying to myself what do I do now??

Shall keep you all posted! Again, thank you all for your kindness and support over the last three months. I am not sure how I kept going after 6.5 years of this undiagnosed leak. I guess you just never know your own strength. My heart goes out to all, as I see total strangers reach across the country and oceans to help.

Thanks again,
Nancy Drew :-)

[nancydrewbr]

Just updating my progress or lack of progress shall we say. Met with the surgeon a little over 3 weeks ago. He said according to the lumbar puncture/cisternogram test that the leaks are sealed. ( I am still not convicned!)He said let's try Biaxin and Predisone.Just finished 21 days of the Biaxin and 6 day dose pack of the Predisone. No improvement.:(I decided to meet with a internal med/infectious disease doc as this sinus stuff is just not ending. I was living in Brazil for a few years prior to the CSF leaks, so am turning over every stone to get to the bottom of this problem.

He was great, wants to do a nasal culture 2 weeks from the stopping of the antibiotics. Also said critically important that since I had 2 leaks sites that I should have the Pneumococcal Polysaccharide Vaccine, so that I don't get meningitis in case a leak starts up again. I thought to myself better to have in case I am still leaking!:confused: How come none of the docs that I have met with mentioned this vaccine??? It's alarming that not even the ENT surgeon mentioned it. :mad:

Well besides all this new news, the doc noted I had an enlarged thryoid and wanted me to return to my primary doc and also get an ultrasound. That's tomorrow, so maybe I will have some news, but this throat/ear pressure/tinnitus can be because of an inflamed thryoid. I am just catching up on this new area now. My primary doc said it's enlarged on the LEFT and that's the only side of my head that hurts.:eek: Wow, has this taken an interesting turn, and perhaps thanks to this new set of eyes. It's almost comical that the ENT surgeon said that an infectious disease doc wouldn't be able to help me.

Am hoping to have more news soon and get to the bottom of this problem.

Best wishes,
Nancy Drew:)

[Edward]

Thanks for the update Nancy. On the issue of meningitis vaccinations, I have read that there are actually three recommended vaccines for people with leaks: 1) The pneumococcal vaccine you mentioned, 2) H-influenzae vaccine, and; 3) Mengiococcal vaccine. I have requested and received all three of these vaccines. Everyones situation is different and nobody should insist on any vaccination or treatment without talking to your doctor(s) first and researching the issue thoroughly. But, thought I'd let you know!

-Ed.
:)

[nancydrewbr]

Thanks Ed for the info, it's good to know for everyone. Just an update, but am still struggling with the pressure/pain on left side only. I was able to get a very small amount of fluid out of left side and we sent it to Mayo. It came back negative. Of course there is a whole long story about how that should be stored/ frozen, etc. It took me a week to collect a small amt. Perhaps it's all going down the back of my throat if I am still leaking. Called the Neurosurgeon that diagnosed me last summer and I told him how these pledgets were half falling out and not put in what I thought was proper. You cannot have them shoved up your nose very easily in a sitting position for them to get back to the posterior area. He agreed that if the test is not adequate then then the results are not going to be accurate. So for now, because this has continued to be an ear problem, he wants me to see a Neuro-otologist and rules things in or out. If needed he said he would repeat the LP cisternogram and possilbe other test in conjuction and go from there. When 35 ENT's said there is nothing wrong and countless other docs, it is good to know that there are docs out there that listen and can put 2+2 together. If this doc had said no way u don't have a leak, and did not follow through with his gut feelings, that there was high probability that I was leaking, I would have never been diagnosed with 2 csf leaks in my sinuses.

My ENT surgeon said it would take a while to calm down. It's 5 months and I am sure by now I would have had some improvement. He also said he was sure I was suffering from the effects of a long term leak and of course he doesn't know what to do now...:-(

So no really good news about feeling super duper yet, but am determined to get to the bottom of this and find out what is going on and hopefully a good Neuro-otologist can, as this seems to have affected my ear and hearing.

Shall keep you posted as to how this journey is going, as I am running out of body parts to check out. :-)

Nancy Drew

p.s. I have had otosclerosis, deviated septum, 2 csf leaks and all on the left side.Right side is fine.

[Army56]

Hello there!

Well I don't know if I have the same thing as you people in this thread but here it is... I have a nasal leak the only occurs when I bend over (maybe lowering my head by as little as 8 or 10 inches) and it is a quite a bit more than a few drops. It is a steady flow - probably about a teaspoon full. I've had no tumors, no bumps, no surgery, not alergic to anything but bee stings (none around this time of year :).

I did however have a cold about 2 months ago but my nasal leak has been here for only a little over a week now. I know the humiliation you talked about as I have to bend over at work to check other workers progress and accuracy (I'm the shop supervisor) only to have my nose leak all over the place. It feels exactly like a nose bleed but it is just like water.

On a lighter note. it ONLY happens when I bend over. I have no problems when I'm lying down or sleeping. Any thoughts you may have would be greatly appreciated.

Thank You.

[LauraL840]

If it happens regularly enough, make and appointment with an ENT and ask him/her to do a beta 2 transferrin test (make sure they know what a csf leak or rhinorrhea is before you go). Get doc to give you a collection bottle and bend over and produce a sample and get it tested.

Sounds leak-ish to me....

[nancydrewbr]

Sounds like a leak to me, after having leaked for 6.5 years.....

One impt. thing to make sure is that this Betta II Transferrin test is done properly. Lots of us have been handed containers for collection without ANY direction. I have had two tests, both were negative BUT not one doctor gave me directions for collection. JLB had a really good post about properly collecting....it has a very short shelf life (4 hrs.)so needs to get in quickly IF you can get enough to collect in that short amount of time. It took me a week to collect enough to send in...too long, test of course would come back negative. I had a negative Betta 2 transferrin test but Neurosurgeon proceeded forward as he was very sure I was a slow, low volume leaker...sure enough he was right.... look below for what JLB posted on another helpful thread. This is a tricky test and not enough docs AND labs know the collection process. If people are getting negative results from this test...I would question the results. Docs are looking at this test as a gold standard and not enough people involved know the correct collection and handling process, as many of them don't know either. Ask before you are just given a container and sent on your way.

Take care,
Nancy D.


------------------------------------------------------------------------------------

CSF specimen collection guidelines with lab links:
CSF fluid is a highly perishable and precious specimen that can be difficult to collect.
Note: The CSF sample absolutely MUST be less than 4 hours old from the time it leaves the body (and should preferably be refrigerated during transport to the collection point) to the time when it is handed in to the processing lab or lab shipment collection point and then the specimen needs to be immediately cooled to lab specified shipping temperature. Summer heat, etc. will shorten viable specimen life. Test vial sealed in zip-lock inside ice-water thermos possible automobile transport method to collection point. Be sure lab attendants at the specimen drop-off point immediately follow testing lab temperature guidelines. (They vary by testing lab.) Failure to provide an extremely fresh sample will cause the high glucose (sugar) in the CSF to facilitate degradation of the Beta-2 protein (through decomposition and/or fermentation) and result in a FALSE NEGATIVE result. Proper collection and subsequent handling is critical.

[wobbles]

I totally agree with NancyD...since docs are using the beta II transferin as the "gold" standard test for cranial leakers...then it is essential that the test be properly performed!!! My "negative" test results last year delayed treatment of any kind for months while my docs went off on various other diagnostic paths....none helpful. Even through me off...even though, in my inner wisdom...I felt that it WAS CSF that was dripping from my rt nostril. When it started up again this year...well I thought that the dripping was some sort of weird side effect to the HA! How naive is that??It wasn't until the EBP for my spinal leak failed in March that questions were asked about the dripping...all because of a false negative beta II transferin test! My new NS is now sure that the main leak is cranial and that any relief received from last year's EBP was incidental (or maybe because there is ALSO a spinal leak...lucky me).

So bottom line...for me at least...is that the beta II transferin test, while useful in large volume leaks where the needed 1cc of fluid can be collected in the 4 hr window...is probably greatly overrated and over relied upon by medical professionals!! We need to get the word out to all involved....a negative test does not mean that there is no leak!

stay strong

m-

[nancydrewbr]

Hi All,
Haven't posted in a bit, but that didn't mean I gave up my search to find out what was going on. If only the docs had listened to me after I told them how this whole ordeal begin. Let me repeat.....HISTORY IS CRITICAL!! Mine if you what the Cliff note report began on a plane descent when I had horrible pain in my ear. It was then two months later that I got the worst advice an ENT could give anyone. You need to valalva 12x a day to move your stapes bone. NOT! It was then that I most likely re-injured the problematic area.

Well just went through lots of ear testing and vestibular (balance) testing to find out what if anything is going on with my ear. I have been diagnosed with a perilymph fistula, which is a tear or ruputure of the oval or round windows in the inner ear. Most likely trauma induced, which is the typical scenario. It thus leaks small amounts of perilymph fluid down the eustachian tube.

Perhaps the sadest part of this journey is that 25 ENT's and 4 Neurotologists did not pick this up or even fail to mention it as a possibility. I kept telling them my ear hurt and when this all happened but they kept insisting that I did not do anything, so u know what u finally start seeking out other routes. Moral of the story is if u know when it happened and I did, as I heard a suction/pop sound then stick with it until u find someone who will listen. This is a very overlooked diagnosis and quite honestly I don't think most ENT's know how diabiliting it is. I have horrible head pressure and tinnitus off the charts, a very lightheaded whoosie feeling and if I am very active or bend my head down below my heart, my nose will leak just a tad.

The two csf leaks are supposedly fixed in my sinuses and now I need to address this new diagnosis of a perilymph fistula.

By the way, the doc that diagnosed me was the 50th doc I saw!

Not mended but hopeful that I am on the right course now! Let me know if I can help anyone.

As always,
Nancy Drew and the show is not over yet!

[nancydrewbr]

Hi All,
Just updating the continuing saga since I got diagnosed with an inner ear problem and most likely a perilymph fistula. I have been on a good course of meds to try and reduce the pressure...Neptazane, Dyazide and Topamax. Sadly, they did not work at all. I have also opted to do further non invasive testing and had a dehydration glycerine test. This test specifically affects inner ear fluids and can help in the diagnosis of inner ear disorders. Well testing proved I have some inner ear problem and so the perilymph fistula remains a probably diagnosis....the next best step is to do exploratory ear surgery and see what is going on.

I have opted for surgery to graft the oval and round windows. It's my best hope at reducing the pressure in my ear and helping with the tinnitus. Just to update people, this all started on a plane descent with ear pain and then an ENT had me excessively forecefully valsalving at which point I head a suction pop sound and I have not been the same since. Docs who embrace perilymph are highly suspect because of my history but there ia a regional difference as to whether or not you will find a doc that embraces PLF and believes in them. I am sure that is why I have not been diagnosed in 8 years. Sadly, it's a very overlooked problem.

Surgery should be in the beginning of Decemeber and hopefully I will have some good news to report.

All the best,
Nancy D.

[vini]

hi Nancy

just been reading your thread a real epic do you get vertigo type symptoms as in Meniere's Disease I took my atenolol at night instead of in the morning all my symptoms got worse even laying down I am only on my second gp this one took me off prozac and is open to the fact I may have a leak now I am on the waiting list with a neurosurgeon I found that some beta blockers reduce CSF production I will talk with the ns about the beta blokers as gp wont know about the link to CSF flows and I don,t want my new gp to close his mind because this affect is still in the research stage wow 50 doctors :eek: I would say your a real persistent leaker hope you find a solution soon

kind regards vini :confused:

[nancydrewbr]

Thanks Vini,
No, I don't have Meniere's symtoms...and no vertigo...just a very lightheaded, whoosie feeling with tons of ear pressure on the suspect side. And oh yeah, loud tinnitus which I mentioned all started after the barotrauma and pain on the plane descent. I do have some conductive hearing loss also...

I am leaking less out of my left sided nostril, but those 2 CSF leaks in my sinuses are supposedly fixed since I had a redo cisternogram..now the itty bit of leakage, I think is coming from this fistula...

Just a note as I had tried everything...when I went for cranial sacral...I remember numerous times my head just falling to the left...on it's own....The practioner would ask me if I was doing that...but no, it just seemed to want to fall to the left while she would do the cranial sacral on my head ....come to find out it might be because I have a perilymph fistula. It's just an interesting point I noticed...my head feels heavy on the left, bad side.

All the best,
Nancy D.

[vini]

hi Nancey

I think the HA with a head leak is a bit different IE I get a HA from low pressure and toxin build up but also pain were the dura is attached to the skull and spine like in my neck it feels like its puling in which makes sense if the dura is deflating so I tend to put my head over to one side to relive the tension on that side if that makes sense cranial sacral therapy I could see how it could work but never having tryed it I reserve judgment my balance is getting worse it is known that CSF leaks damage our bodys hearing loss e.c.t and it seems crazy it is not dealt with as something that needs to be fixed ASAP , even a small leak when you consider we only have half a coffee cup of CSF can cause symptoms

lets hope the good doctors can come up with a better fix soon I have leaned so much from Laura and all

thanks vini :confused:

[AshleyRau]

So here's my story...or some of it anyway. The entire thing would take up most of your day, and probably some of your week :(.

I've had a total of 5 sinus surgeries over the past approximately 16 months. The latest of which being 10.14.08, which was a complete ethmoidectomy and frontal sinus exploration with tissue removal. I have horrendous chronic sinusitis to which I've been on even IV antibiotics for in order to cure for a minimal amount of time at a time.

Since the latest surgery, I've had an intermittent leak of some sort, which is only out of the left nostril. It's a salty substance, extremely watery, completely clear. It is most defintely not mucous. I have terrible headaches with this as well. I was told to collect it as I could, and provided a sample which was given to the ER department per my ENT's order. They sent it off for a Beta Transferrin test. I read what you guys have said about the 4 hour rule, so I'm afraid its going to come back false-negative...as it was definitely over the 4 hours by the time the ER got to it...

The ER did a sinus CT to rule out the option of a fracture, but according to the Dr. that saw me, when she spoke to the technician that read the CT they wrote that there was no evidence of fracture because there was too much inflammation and sinusitis to be able to determine anything at this point. I had a spinal tap completed, to which came back "ok" and the Dr. again said that this just means that if I do in fact have a CSF leak that it is not a severe one.

My ENT used his scope in the office to take a look at what he could, and said he didn't "see" anything active at the time, but I'm still concerned. I know there is something randomly leaking out of my nose that has never been there before.

Ironically, I had an upper endoscopy completed recently as well, which diagnosed me with a lot of inflammation, evidence of reflux, and a bunch of small ulcers in my duodenum as well. I've never EVER had a problem with reflux before (I used to make fun of my husband for this!) until just recently. I had an endoscopy completed a year ago which was perfectly fine compared to this one.

I have a feeling that if my Beta transferrin test comes back just fine that my ENT is going to take the approach that everything is just fine. Everything isn't just fine, and I don't know what to do. I contacted my PCP, and he recommended I go to a neurosurgeon; when I tried to make an appointment, they refused to see me and said I have to go back to my ENT. :mad: (I have an HMO insurance, so I'm at their mercy...) I'm just at a loss....

[nancydrewbr]

My ear surgery has been postponed since one doc is requesting a lumbar puncture opening pressure reading, which might explain why I had two CSF leaks in my sinuses and why I might possibly have a perilymph fistula in the inner ear. Vestibular testing pointed to the fact that there is a high probability of a a fistula, so I am possibly leaking perilymph fluid, even though it's a very small amount.

Anyone who is about to have a lumbar puncture, make sure they take an opening pressure reading. After two cisternograms and three needles neither doc took this pressure reading. So, now I have to have yet another invasive procedure to get diagnosed. Ask questions...I was also told to note location of the needle insertion in case I ended up with a leak later in my spine.

Still trying to get diagnosed....and hopeful that this almost 8 year journey is about to end soon with a proper diagnosis.

Best,
Nancy D.

[belindalnr]

Hi there , I am new here , wish I wasn't here:mad:, but things happen. I have a spontaneous csf leak from my left nostril. I have had an mri with and without contrast . Shows I have a bone missing in my left sphnoid. ENT theory is high blood pressure erroded it away:confused:. I too have been to many docs and ER's. I am 45 yo and was not treated for high BP until about 2 years ago. Then it was only 135/80. The reason I ended up at the doc was because my back had went out and I had to call an ambulance to take me to hosp. they did MRI there. After I could finally stand up a few days later I went to doc for pain and she put me on meds for HBP. Long story short, had to go to ER 2 more times with what I thought was bulging discs and thinking I was going to have to have surgery. Neurosurgeon sent me for MRI says nothing wrong with back. I am a hairdresser and while I was cutting hair and would lean my head over to the left my nose would pour, very embarassing. Went to my GP he said allergies, gave me astelin, didn't help. Finally fed up with it I went to ENT who suggested I have a spinal leak:eek:. WOW... I thought he is crazy!! but then went and had the tests he ordered and found out sure nuff I have a leak. I wake up in the middle of the night wheezing from inhaling this stuff. When I get up in the morning I soak a paper towel with this stuff, but I have no headache, only muscle spasms , bad ones , in my back. I have tried to find out if this is common and the ENT says the back spasms have nothing to do with the nose. But the neurosurgeon says , get your nose fixed and your back will quit hurting. I am so fed up with NO ONE knowing what is going on. I have app for consultation with doc from big hosp next week. No one from my area would touch it. Was just wondering if anyone else had muscle spasms.........thanks
P.S. if this sounds like goobly talk, sorry I am taking muscle relaxers