CSF otorrhea and possible Pseudotumor cerebri

[vheadley]

I am new here and even though I am a nurse I am clueless about most of this. I had an epidural injection at my C6/C7 level and sustained a spinal fluid leak on April 1, 2007. That was 10 days of pure horror that began 10 months of more pain and fear than I could ever imagine. On Jan. 12 of this year I woke up with fluid pouring out of my right ear, this lasted for 4 days. I finally got to see an ER doc who dismissed me as "crazy" when I told him I thought it was spinal fluid (even though I showed him the fluid on my pillow with the distinct hallow rings on it). He said I had an outer ear infection and gave me some antibiotics and sent me on my way. Oh yea and my ear drum wasnt perforated either, WRONG!!!!!!! When I went to the neurosurgeon he said that he dosent believe the fluid leaking from my ear is connected to the other leak ( I do ) but that dosent mean I dont have 2 seperate leaks. He ordered a Cisternogram, Meyelogram, MRI of my brain and spine. the MRI of my brain showed possible pseudotumor cerebri. I have read a little about that but not so sure how it fits in here. MRI also showed possible CSF otorrhea, big suprise!! I am having the cisternogram on tuesday and the meyelogram on the 19th. The hospital told me they couldnt be done on the same day because the dyes are not compatable. This means 2 seperate punctures to my spine which scares me to death since the first one worked out so well. I really need to know what to expect on tuesday. The hospital says I will go home that day and I can have breakfast. From everything I have read none of that sounds right. I know I am anxious and they are going to have to sedate me so I am not eating anythig because I want anesthesia!!!!! LOL. Also the neuro doc sent me to a ENT and he feels I have an inner ear fistula that is possibly completly through the temporal bone. basically every one involved is saying Craniotomy!!!!!!!! So any information anyone can give me will be greatly appreciated. Thanks, Im desperate.:o

[LauraL840]

Imaging ...
Cisternogram is imaging of the cisterns of the brain. It can be in the form of Radionuclide, MR, or CT imaging. MR and CT imaging contrasts may not be compatible, I do not know.

Myelogram is imaging of the spine. It can also be done in the form of Radionuclide, MR or CT imaging. I DO know that Radionuclide contrast (radioisotope) and CT contrasts are compatible so that one poke can inject both types of contrast for study. I'm pretty sure I've read that Radionuclide and MR contrasts are also compatible.

You didn't say why you had a C6/7 injection .... it may be relevant.

If you have pseudotumor cerebri, then you have a 'false tumor' that causes your brain to over-produce csf (I believe this is also called normal-pressure hydrocephalus). But this means that you run risk of developing a leak (or leaks) if an area of the dura becomes weakened for any reason. Therefore PC can cause multiple leaks. I believe the fluid coming from your ear WAS csf... nothing else HALO's like csf and since your a nurse, you know what that is.

You've got a lot of 'board' reading to do! Try the 'useful links' and try also to do an advanced search on this board by whatever 'key' words you like! DO NOT rely on your doctors to know what's going on! Many of them are flat out uneducated about csf leaks. You need a good neurosurgeon and likely a good second or third opinion. You also need to have copies of all your records, notes, images, etc. Get a 3-ring binder (a big one, doctors have a way of using lots of paper when things get printed off! LOL).

Sorry you're having such a time! Things will get better, even if it does mean craniotomy! One step at a time!

[Tamaretta]

One other thing.....if you want sedation, I would talk to your neurosurgeon's office TOMORROW! Express your concerns and anxiety. Also (like Laura) I would ask again if one poke and one dye could be used. Ask the neurosurgeon, ask the radiology dept, etc. and you may have to do a bit of reading to give them some ideas. AND I do know that different hospitals (maybe states) have different guidelines for the dyes used. For instance, the type of/weight of dye used in Houston for Taylor's initial myelogram was not available in California.

PS - The last myelogram for my daughter no sedation was scheduled (she is 16 and has always had sedation) and it took over 4 hours for them to set it up AND several people came in and told her how it was not a big deal, they really needed to go ahead and start because they needed the room for the next patient and lots of people have it without anesthesia!! She batted her long eyelashes and sweetly asked every one of them if they had ever had it done--they all said no--she then said "Don't tell me it's not a big deal--you have no idea what I have been thru for 8 years and I want a few hours of NO PAIN. If you need this room, then wheel me into the hall" (I was there as reinforcement only ;)

[guineapig]

give us more info. that you had a leak from your "epidural" (that would seem went subdural) is believeable. your pure horror and its proximity to the cervical puncture is conclusive, presume you had the "somebody please kill me" headache. did you have any diagnostics done, saying neuroimaging? what treatment was done to fix the leak? caffeine, bed rest, epidural blood patch lumbar or cervical...?

your er experience is typical chronic leaker treatment and initiation. in fact it is the second most common symptom of a chronic leaker, doctor abuse.

it would not seem, at least face value, that there is no causal relationship between a spinal leak and cranial. if anything a spinal leaker, either traumatic or spontaneous, would have less chance of becoming a cranial leaker do to the fact that the spinal leak would reduce volume and thereby decrease intracranial pressure which in turn would reduce chances of a spontaneous cranial leak.

LauraL840 has good words for you. it would seem from your story that you are in it for the long hall. begin by being your own doctor. take responsibility for yourself, which it appears you have begun with your estimate of your er doctor. like Laura said, you've got a lot a reading to do. keeping track of your records in the manner she suggested is important too, not only for that part of your own learning, but also as presentation to physicians it conveys that seriousness that you take for your own care, that the doctor is an adjunct to you in the professional care of your being.

importantly. consider your experience of the cervical puncture. if your cervical meninges did not seal post haste the puncture, without significant necessary consideration, what makes you think your lumbar meninges which contain significantly greater csf pressure will after the LP? not to say it will not, just that the risk for it not to is greater.

w/out knowing your treatment for the CP leak, i would not definitively advise. but would suggest otherwise that an LP puts you in particular w/ your history at greater risk for developing another spinal leak. since i am a spinal leaker better versed in spinal leaking and treatment, i know little of cranial leak methodology. localizing cranial leaks is more important than spinal for conservative treatment, say epidural blood patch, as that can be administered to the spine w/ good effect w/out knowing where the spinal leak is.

should you go ahead w/ the LP, have a precise location of puncture made known; mark it w/ a water proof marker. should you need a glue patch, the exact location will be marked so imaging for a glue patch will be superfluous.

be educated on imaging procedure. like what you should do physically to better increase the odds of leaking during imaging so the contrast will migrate though any hole if it can and the imaging be successful.

and post LP, i would stay down a good 5 hours to minimize your chances of a spinal leak. and hey, ask the doctors why they can't give a glue patch right over the LP w/ the same needle as it is withdrawn from the dura. not that i suggest it, but i wonder... and minimize use of your abdominal muscles for a good month post LP. (i even use my arms to get up from and down to a prone position.) don't blow your nose. dont' lift heavy items. don't strain on the toilet. no aggressive sex ("man on top") for a while.

make sure they note your opening pressure when the LP is performed. and a sample of csf is drawn for analysis. and if you are laying on your gut when the LP is done; nothing under the stomach as this distorts LP pressure. keep your neck and spine straight; head to the side or tilted back will increase csf pressure down spine and distort pressure reading.




I am new here and even though I am a nurse I am clueless about most of this. I had an epidural injection at my C6/C7 level and sustained a spinal fluid leak on April 1, 2007. That was 10 days of pure horror that began 10 months of more pain and fear than I could ever imagine. On Jan. 12 of this year I woke up with fluid pouring out of my right ear, this lasted for 4 days. I finally got to see an ER doc who dismissed me as "crazy" when I told him I thought it was spinal fluid (even though I showed him the fluid on my pillow with the distinct hallow rings on it). He said I had an outer ear infection and gave me some antibiotics and sent me on my way. Oh yea and my ear drum wasnt perforated either, WRONG!!!!!!! When I went to the neurosurgeon he said that he dosent believe the fluid leaking from my ear is connected to the other leak ( I do ) but that dosent mean I dont have 2 seperate leaks. He ordered a Cisternogram, Meyelogram, MRI of my brain and spine. the MRI of my brain showed possible pseudotumor cerebri. I have read a little about that but not so sure how it fits in here. MRI also showed possible CSF otorrhea, big suprise!! I am having the cisternogram on tuesday and the meyelogram on the 19th. The hospital told me they couldnt be done on the same day because the dyes are not compatable. This means 2 seperate punctures to my spine which scares me to death since the first one worked out so well. I really need to know what to expect on tuesday. The hospital says I will go home that day and I can have breakfast. From everything I have read none of that sounds right. I know I am anxious and they are going to have to sedate me so I am not eating anythig because I want anesthesia!!!!! LOL. Also the neuro doc sent me to a ENT and he feels I have an inner ear fistula that is possibly completly through the temporal bone. basically every one involved is saying Craniotomy!!!!!!!! So any information anyone can give me will be greatly appreciated. Thanks, Im desperate.:o

[vheadley]

Thanks for all of your posts!! I did have the LP on Tuesday and thank goodness it went well.. Good news is that when I asked the Interventional Radiologist for sedation I explained to him that I was scheduled for a Meyelogram next week and he was baffled and said that it was ridiculous and they decided to do both procedures that day. So thank GOD above, I only have to have one puncture. I also did learn alot from the reading I have been doing (I read alot before I posted) and I did valsalva after they injected the dye and I think it helped them see something. The reason I say this is that as I said before I have a ruptured ear drum and when I valsalva everyone in the room can hear the air flowing out the hole in my ear (its realy creapy). After the injection there was no air flow. When they were rolling me out of CT everyone in the control room was all a flutter and I could hear them talking saying things like "look at that", "call the radiologist" and such. They didnt tell me anything but I have an appointment with my neuro on the 20th so hopefully I will know something then. To fill in the blanks about the first epidural injection it was done for pain relief from herniated disks. I have been in chronic pain for almost 15 years and got into a 2 more MVA's in 2005 which exacerbated my pain. This doc at my hospital convinced me he could help and he seemed to be helping people all around me, he injected my charge nurse one time (this 6 foot tall man had been literally dragging his leg from pain from a hernatied disk and is still fine from one injection). So I felt like maybe I should let him try and see if he could help me because the pain had reached a level I could no longer ignore. My mystake was I didnt do my research (at the level he injected me you cannot do a blood patch because its to close to the brain stem) the blood patch is too dangerous. I was finally hospitalized after 4 days of agony because he convinced everyone nothing was wrong with me. I finally got a CT that showed a decrease in volume of spinal fluid not consistent with my age (even that was dismissed by the ER doc) but my PMD did not ignore it, and got me admitted. I spent 6 days inpatient on IV hydration, fioricet, topamax, dilaudid and several other meds. I have had constant migraines since and no one has been able to help. The ENT doc is working on getting me into see a Neurotologist, he says that is the only doctor who can perform the surgery I need and my hearing remain intact. I am not sure what is in store for me but I am grateful for this site and any advice. As for keeping a record dont worry, that is already done!!!!! being a nurse did teach me that much, LOL!!!!! I just have no neuro experience, but if you have a GI bleed im your girl!!!!!! Thanks guys. Im forever grateful and I wish you all the luck in the world. Vonnie

[vheadley]

By the way, They didnt use pledgets in either of my studies, I asked the tech, and he acted like I was crazy. He said he has never heard of such a thing. I am in Florida and my test was done at a very good hospital here that is supposed to have some of the top technology available so I am confused. Any thoughts on that???? Also they did give my Demerol for some partial sedation but wanted me awake so I could move around and such to help with getting the dye to move where they wanted it and that helped alot. Although the lidocaine hurt more than I expected, I am really glad I had the Demerol. I dont suggest anyone have this test without some sort of sedation beforehand...... just thought I would add that.. thank all. Vonnie

[vheadley]

You guys are gonna get tired of me, LOL. But as I read I keep coming up with questions. One of the things that my first brain MRI showed the one that Dr. Rippe suggested the pseudotumor cerebri was decreased ventricle size. He suggested an MRI with contrast which they did and it didnt really show much different but he again stated that the decreased ventricle size which he spoke of in detail on the previous scan was stable. I just followed a like posted by NDrew and was reading that that in itself is a sign of a CSF leak. I am confused as to how all this all correlates. I was under the impression that the decreased ventricle was from the pseudotumor cerebri puting pressure on the ventricle causing collapse (again info from a doc that I work with not involved in my case just well meaning trying to help me understand). I am also wondering what caused the pseudotumor cerebri and is it related to the original leak?? I have my work cut out for me here dont I!!!!!

[vheadley]

The MRI of my brain also shows an opacified mastoid. Does that help anyone? And I guess it might help you to know that when I was 16 the docs put a tube in my ear that is now ruptured because they said I had so many ear infections over the years that it had created a suction and caused the eardrum to collapse and lay on my bones on my ear and actually dissentegrate parts of the small bones in my ear. At about 18 that tube got blocked and they yanked it out. It was never replaced because the ENT I went to told me It wasnt neccessary. The ENT I am seeing now feels that the fistula he thinks I have is a continuation of that process. I am a very complicated case, I know. If I went into everything wrong in my neck it would take all day. Long story short; hernations, bone spurs, tears, compression, etc., you name it its there. I have this big neon sign over my head that says "HIT ME". At least thats how it feels. People love to run stop signs and plow into me (4 times in 15 years) none of which were my fault or that I could avoid.... and the last one I had a double compound open fracture of my right forearm. That was the last semester of nursing school. BUT I never missed a day, and I graduated *** LAUDE!!!! I get depressed but this thing is not going to beat me. I just need some info to help me fight back, and thank GOD I think I found my lifeline!!! I already love you guys!!!!!!!!!!!:)

[sadlisa]

Vonnie,

So happy for you that they decided to do both procedures together. It does seem crazy to have to do 2 LP's. I look forward to what your diagnosis is. If I were you I'd call the neuro and tell them the study was done and wondered if there was anything found. He/she just may call and give you the news. Waiting for answers is so hard.

Waiting for answers to questions we ask
Hoping the doctor has time for the task
Looking for defects difficult to find
I'll try to be patient these things they take time

At least the study has been done for you. Mine was rescheduled for next Tues. Thia

[GingerLox]

Hello Vheadley.............It's late right now, as I read your post. I just wanted to let you know that I too, suffer from otorrhea. I am scheduled to see a neurotologist in Dallas next week whom specializes in otorrhea/csf leaks. Lately my symptoms have become increasing worse. I have been experiencing lots of fluid buildup in the left side of my head, all around my left ear. It is as if the fluid has increased, and the inner ear area becomes so overfull that it has a hard time dripping out into the middle ear. It has become painful. It is always a relief when the fluid flows out. I have an intact ear drum so my otorrhea manifests as rhinorrhea. Mine is bilateral. Although, the left side is much worse than the right. I have a damaged brainstem, it was either due to a horrific fall I had many years ago, or due to scar tissue damage to the brainstem related to my Lupus. I think the brainstem damage and the csf leak are related. The brainstem damage has affected my entire body, and organ systems. But the newest discovery is that I have no auditory reflexes which is indicative of a midline brainstem lesion. I cannot have a MRI because I have a pacemaker (due to the autonomic damage and the affect it had on the pacing mechanism of my heart). I have had many CT scans though. One of the findings was that I showed little pneumatized space in my left mastoid. It sounds very similar to your finding, just different words. I really hope this doc knows his stuff.
Good luck with all your tests. It sounds like you are getting answers. That is fantastic. Please keep us updated.
I would write more, but I am very tired tonight!
Hang in there!

GingerLox

[Edward]

Hello Vonnie, GingerLox, and Everyone,

I have not posted in a while but I am a 40-something year old male and I also have CSF ottorhea and like GingerLox, mine is bilateral. Also, like GingerLox, mine is constant in my left ear but only intermittent in my right. Officially I do not currently have a diagnosis. I have been to Mayo in Rochester, MN and they said I definitely did have a leak at one time but they cannot find it currently. Nevertheless it is still there. My leakage is due to skull fractures I sustained nearly 1 1/2 years ago now.

Vonnie, I think you mentioned the opacified mastoid. I had this also show up on my scans following my skull fractures. There are probably different reasons why this can happen but it can be a sign that you have a leakage of CSF into the mastoid which is being picked up on the scan. They saw this on my ct-scans and MRI immediately following my skull fractures. As you probably know since you are a nurse, the mastoid is connected to the middle ear which is why leakage into the mastoid can result in CSF ottorhea.

GingerLox, it is good to hear from you. I was afraid maybe you were no longer visiting this site. Although I know your symptoms are much worse than mine, I would very much appreciate it if you would keep me posted on your progress. There are not that many of us ear leakers on this board and the similarities you and I have are quite amazing. We both have bilateral leakage. AND we both have autoimmune conditions.

And Vonnie, please keep us all posted on your progress.

Best Wishes. Take Care....Ed.

[vheadley]

Wow Gingerlox, it sounds like you have really had a hard time. I am so sorry to hear what you have been through. I still havent gotten any news from my tests but I did get a call today from my PMD and the neurotologist I was reffered to by the ENT was denied by my insurance. Seems as though they feel theres insufficient evidence that I need one????? I dont know. I called and she said maybe when I get the results from the cisternogram and meyelogram IF they show something I can resubmit the claim. Also part of the problem is that they have the neurotologist listed as just an ENT doc and they dont understand why the original ENT cant do whatever needs to be done. I HATE insurance companies.. I think they look for the dumbest people they can find and offer them employment. LOLOLOLOL..... anyway thats all thats new here. hope you are all having a good day.

[vheadley]

I have a question, maybe someone has an answer for me. If I realy do have this pseudotumor cerebri, which by the way all the docs seem to be ignoring. Maybe this fistula was my bodys way of shunting itself. I mean I already had a weak spot there and it needed a way to drain if the pressure was to high. The night before I had the fluid drain out of my ear and the eardrum rupture I had gone to the ER for a migraine and gotten Dilaudid IV push and they gave me a bolus of LR 1000cc. maybe it overloaded my body and I needed to drain some fluid. Does this make sense to anybody??? I have been reading more on the pseudotumor and I just started thinking that maybe if the treatment is a shunt maybe my body shunted itself naturally and maybe I shouldnt let them mess with it. Maybe nature knows what its doing??? I am so confused, I dont know. I wish I could find a doc that has some answers. The neuro I am seeing is a very good surgeon but thats exactly what he is a surgeon, and if its not surgical hes clueless (or at least thats my take on him). somebody give me your opinion here please.... Vonnie

[sadlisa]

Wow Vonnie,
Good theory. Only trouble is if you are leaking out of your ear you are open to infection and meningitis. Believe me you don't want to go there. I do think a body does try to repair itself and it could be if your pressure was too high it caused the leak in a weak spot.

I also agree with surgeons being clueless about diagnosis. They are more geared for repair once they know what the problem is. That is the opinion I got from my HNS(ent) when I asked if he would stick with me and try to help figure out what the heck is wrong with me. I am anxious to hear your results of your test. Thia

[LauraL840]

If you have pseudotumor cerebri then it's reasonable to assume that if a 'weak' place in the dura is available that the over-pressurization is going to continue to push at that weak place until it ruptures. Liquids ALWAYS ALWAYS ALWAYS follow the path of least resistance.

However I'm not sure that the dilaudid followed by 1000ccs LR would increase your CSF production. While that certainly 'over-hydrates' your body, it doesn't correlate to 'over-hydrating' the brain. Some headaches are simply a result of being dehydrated, so the bolus LR is either used as hydration or pee'd away. You'd have to look DEEP into 'potential' side effects of dilaudid to see if it increases CSF production (there are some medications that do)... next time you're at work grab the PDR and see what you can find out. It's doubtful that you'd find much online unless you have a subscription to the online PDR. There are also medications that decrease CSF production and if you have PC, one of those might be helpful!

However, I do think there's a more likely connection with your 'migraine' and your subsequent leak. I'm not sure how one would differentiate between a true migraine and intracranial hypertension (caused by PC). Other than perhaps by migraine Hx and symptoms (specifically aura's which are migraine specific and not at all PC related).

I think you'd be best seen by someone who specializes in PC!

Here's the thing ... if you have PC and NOW a leak and get the leak fixed, then you STILL have PC and you're GOING to have another leak! Especially since you've established at least ONE weak point in your dura!

[vheadley]

The reason I was wondering about the bolus causing the overload and hence the rupture is because usually after you get such a large bolus you do pee a lot, and I never peed once in the 24 hours following that. Which I know is really strange. I have been having the migraines for almost a year which have followed the original leak that I had in my cervical spine. I actually asked for the bolus because the last time I had gone to the ER and gotten the Dilaudid the doc gave it to me with a 500cc bolus and IV push and it worked so much better than usual. I attributed it to the fact that I was probably dehydrated. I just was wondering if maybe somewhere along the way this pseudotumor had developed and the 1000cc bolus was too much. I dont know, maybe im grasping at straws. I just really feel like the docs havent addressed the findings of possible PC at ALL and that concerns me. Im glad they are finally at least looking for the leak but the PC is very scary to me as well. I dont want them to miss the tree for the forest so to speak. any help you have to offer is always welcome. Thanks Vonnie...

[vheadley]

I had my appt. with my neuro on Wed. and according to him and the Radiologist- NO LEAKS!! I guess thats good news, or so they say. I would feel more comfortable with that diagnosis if I felt my neuro actually looked at the images. I KNOW he didnt. He dosent do the CD images thing and becasue there were so many images they are all on CD, so he told me that he feels that the radiologist over at the hospital are very competent and he knows them personally and he knows he can rely on their readings of the films. I didnt get to go over any of it till after the appointment because he gave it to me when I left. I am reading these reports and I am sure I dont have to tell you how confusing they can be, but get this the fluroscopic Xray showed "mild ventral epidural defects at the level of the cervical spine without obvious CSF leak of X-ray images. Please refer to CT cervical spine post myelogram report for additional comments." Then when you refer to the myelogram report it goes on to say that "Images of the cervical spine demonstrate minimal ventral epidural defect at the C2-C3 and C5-C6 levels. No additional significant epidural defect appreciated. there is no asymmetric nerve root sleve cutoff demonstrated." It also notes that " No x-ray images of the head were obtained for the cisternogram portion of the study due to to contrast dilution at the level of the head (so how accurate was the CT portion of the SCAN???????) and then it says there is no evidence for SIGNIFICANT contrast leak. So what does that mean, what is significant??? does that mean no leak or just that they didnt feel it was enough to matter??? What is an epidural defect, if there is no leak? By the way it also showed that " Congenitally, incomplete posterior ring of C1 incidentially noted." Im thinking that could cause a bit of a problem. My neuro also completly dismisses the psuedotumor theory that the MRI showed he says there is no way!! He dosent know why im having headaches, but believes I am. He wants me to wear a cervical collar for a week and see if it helps he says I have a lot of other problems in my neck (trust me you dont want me to tell you everything they found), basically alot of spuring and a lot of movement and some tears. He thinks I could be having some vessel entrapment causeing blood engorgement in my brain and hence the headaches. The whole time im thinking sounds kinda like some of the theories behind the whole pseudotumor thing that I have read, but I didnt say anything.. He also ordered a CT angio of my neck, and memory testing ( cause I got CRAFT disease! LOL - Cant Remember A Friggin Thing). but he said if thats my problem im gonna need multiple level spinal fusion, a procedure he dosent like to do. Either way I now need a new neuro, cause I have lost confidence in him now. Sorry this post is so long but I wanted to update you all. And just a side note he did agree to take me out of work while im working through all of this, he filled out my short term disability insurance papers, and my FMLA leave papers (so I dont get fired) so I got 12 weeks to get this thing figured out. Wish me luck!!! AND THANK YOU ALL so much for your support, it helps so much to know you are here!!!! Vonnie

[vheadley]

Just wanted you to know I saw the original ENT doc today and he agrees that the radiologists that did the meylogram/cisternogram, the insurance company, and the neuro doc. are pretty much all IDIOTS. His opinion is the same as mine about the report reading "no significant leak", what does that mean?? He said any leak is significant, and that dosent answer anything. Is there a leak or not. He ordered a new battery of tests ( audiogram, ABR, ENG, SOT ) and he said that if any of them are not normal then the insurance company is going to have to deal with him. He still believes very strongly that I have a perilymphatic fistula (whether it goes all the way through the temporal bone or not), and either way I still need to see the neurotologist. The insurance company says they need more proof and he says these tests should give them that proof. These tests are scheduled for March 4 in Altamonte, So wish me luck!!!! Thanks for all your support, and good luck to you all. Vonnie

[sadlisa]

Vonnie, That is so awesome to have a doctor that believes this is happening and is willing to do what it takes to find it. I am wishing and hoping for you. Stupid insurance companies! Thia

[vheadley]

Thanks Thia
It does help to have a doctor on my side. I have been looking at the MRI a little more closely and of course now I have more questions. I was researching the finding of "low lying cerebellar tonsils" which my neuro also said isnt necessarily abnormal, HUH?? According to all of my research that points to Chiari Malformation. Now I am really concerned!!! does anyone know anything about that or have any insight??? From what I have read it kinda fits in and makes sense and could actually cause the PC if im understanding it right. I havent discussed this with my ENT yet because I researched it after I saw him, but you know I will. I am so hoping these tests tommorow show something that get me in to see the neurotologist and that he has some experience with these other conditions ( ie, that hes not a total idiot as well, LOL). Thanks for everybodys support. I hope everyone is feeling better. I am having not such a great day, as im having caffiene withdrawal and cant take the fioricet for my headache because they want me off caffiene for 48 hrs. for these tests tomorrow, UGH!!! It better be worth it!!! Wish me luck!!!! Vonnie

[Pinwheel]

Hi
I was reading your posts and has your ent ordered a ct scan of the temporal bones? With all of the issues with your ear, have you considered seeing an otologist/neurotologist? This is a doctor who strictly deals with ears. My ear dr also thinks I may have this pseudotumor cerebri, even after my craniotomy. I did have a leak that did not show up on any of the tests I had, they did not find it until they did the surgery. My drs orginally kept going back and forth on who would fix it-finally they both fixed it at the same time! I hope you find an answer soon.

[sadlisa]

Pinwheel,
Where exactly was your leak? It would be nice to know where a leak can hide from testing. Thanks, Thia

[Pinwheel]

Hi Thia,
My leak was due to a skull defect above my left ear. My dura was sitting on my hearing bones, which made my hearing worse than it already was. The drs still think I have a leak, they are hoping that it will repair itself. They did tell me that my dura was thin, of course I asked what would cause this and they did not have an answer. My fear is meningitis. Luckily this has not happened. I still get headaches and with the headaches, I get a stiff neck. My neursurgeon believes this is from the leak. Nothing much they can do. They wanted me to have another ct cisternogram to confirm, I said why, it didn't show the last one! It's been to soon since my surgery-I need to heal.

Thanks for letting me vent!:)

[LauraL840]

Pinwheel,
Where exactly was your leak? It would be nice to know where a leak can hide from testing. Thanks, Thia

Not to be a smarta$$ (I'm kinda made that way sometimes) but,

ANYWHERE....

literally, you could leak from ANY place in your dura and not be able to image it. Conditions have to be just so with either the leak or the imaging to detect a leak.

I bet if you took just the statistics from the people here in the last year who've had imaging studies done, that 60-70% (probably higher but I'll go conservative) of them were unable to locate their leak with their first imaging study and that they've had multiple studies over multiple dates to discover their leak site (if it's been discovered at all). I'd also be willing to bet that those who fall into the 30-40% of 'first-timers' had a real good idea where they were leaking based on illness or injury or prior surgery locations!

[Pinwheel]

Hi Vonnie,
I would tend to agree with your theory. My ear drained for years, and after fixing it, another leak developed. Natures way of relieving the pressure. Now, except for my ear dr, all the specialists I have seen, said they do not think I have intracranial hypertension. I'm beginning to think that he (ear dr)was right all along! They are considering putting me on diamox to control it. Have you tried seeing a neurologist?

[vheadley]

Thanks for everybodys support. Yes, I am seeing a neurologist. He is an Idiot! My ENT is trying desperatly to get the insurance company to approve the neurotologist that he referred me to, but he is out of network so that is a fight! I had several inner ear tests yesterday (an audiogram, ABR, ENG) and BOY WAS THAT FUN!!! Actually only the last one was tough (the ENG, I think) it made me very dizzy and nauseous!!! but that was the point!!! The ENT ordered those tests to try to prove to the ins. company that I need a neurotologist!!! The only results they were able to tell me yesterday is that I have mild to moderate hearing loss in BOTH ears, which suprised me since my left is almost as bad as the right and the right ear has a ruptured ear drum. GO FIGURE!!!! They are supposed to mail the doc and me the test results when they are ready, they have to be analyzed by the computer and checked by a doctor first. I am also begining to wonder about this Arnold-Chiari syndrome thing though. I was looking at my MRI closer and began to research what the finding of "low lying cerebellar tonsils" mean, from everything I turn up thats what it points to. Of course my neuro told me thats a NORMAL finding!!! I am so disapointed in him I cant even tell you. But from my understanding that can cause the pressure build up, the psuedotumor, and the need for release, hence the perilymphatic fistula- since I already had a weakness there in the first place. The ENT hasnt ordered the CT of the temporal bone, YET. He did say I need it but is hoping to let the neurotologist order it because he feels he may order other tests to go along with it and is hoping to save me some money. He did say If he has to, to get me in to see the other doc he will have it done though. Thanks again for all of your support. I dont know if I could get through this without you guys to vent to!!! I have a question, is there any pain medicine that may help with my headaches? I just cant take them anymore!!! If anyone has any suggestions id appreciate it! Hugs, Vonnie

[LauraL840]

Oxycodone WITHOUT tylenol is the only med that helped my dh. It didn't lessen the pain as much as it made him not care about it as much. I'm sure you know what it is so you know you can't take it and work or drive, and shouldn't take it and drink alcohol, but it was at least 'helpful'. It took him about 8 months to develop rebound to this medication, where other meds took on a few days. :(

[vheadley]

The reason I was asking yesterday what pain med helped is because I had an appt with my PMD. He dosent usually give pain meds but I was desperate and I figured it was worth a try. I sat in his office for 2 hours waiting for my appt so by the time he got to me my pain was at a full force 10. I was lying on the exam table in tears when he walked in. He asked me what I had found out since my last visit, I told him not much. He wanted to know why I was trying to get a new neuro. I explained the neurotologist situation to him and then I told him about how the neuro believes that I have pain but wont treat it. I also told him that I feel that he has ignored all of the MRI findings and that he isnt taking my case seriously. I was sobbing by this point. I told him that I have to get some relief. I need some answers. Long story short he gave me a script for morphine sulfate!!!! You could have knocked me down with a feather! It is helping the pain alot, I am nauseous, I have a call in to the Dr. for something for the nausea. Maybe at least I will finally get a little relief while I search for my answers. I just wanted to update you all. Thanks for your support. Vonnie

[LauraL840]

WOW, I think you're the first person here I can recall with a script for morphine sulfate! At least SOMEONE finally took your pain seriously! For nausea ... till you get a script, get some ginger tea, it might help. Otherwise my personal fav is phenergine. Only side effect is it'll make you sleep, but who cares as long as you aren't throwing up and nauseated by pain!

[vheadley]

I have been nauseated and throwing up all day today so I called the doc and he called in some phenergan for that and it is helping. Tomorrow should be a better day. It did feel good to have a doctor actually listen, the cool thing is that I didnt ask for morphine. I just told him I couldnt take the pain anymore!!! Thanks again for your support, I hope you are all having a good day! Hugs, Vonnie

[vheadley]

Just wanted to let everyone know that the phenergan is helping with the nausea. The morphine is helping tremendously with the pain but I still have all the other crappy symptoms. But a little better every day!!!n I am off to follow up with my ENT doc right now so Ill try and get on later to upate what he has to say, hugs to all, Vonnie

[vheadley]

I just wanted to let everyone know what the ENT doc said yesterday. He got the results from the inner ear tests. Acoustic reflexes are absent in the right ear, and I had "abnormal smooth pursuit results" on oculomotor findings. The Audiolgists recommendations were: 1. further consultation with neurologist to rule out basilar migraine, 2. Evaluation by a
neuro-otologist to further evaluate vestibular symptoms and to rule out a possible perilymphatic fistula. Can you say Y A Y!!! Maybe that will be enough to get the insurance company to let me see the neurotologist. Keep praying for me that it is. I am feeling better with the pain med but dont want to be like this forever, basically nonfunctional still just now its from meds instead of pain. Granted rather be nonfunctional and not in pain than be in pain, but im goin stir crazy. Im ready to get fixed and get back to work. thanks again for all your prayers and support. Praying for you all. Hugs, Vonnie:cool:

[LauraL840]

GREAT NEWS Vonnie!

If you still are 'running into the wall' with your insurance company after these results, perhaps you can appeal to the doctor to write a letter to your insurance (detailing the risks of living with a leak and the subsequent $$$$$ that treatment will likely cost them if this isn't resolved sooner rather than later), or contact them on your behalf.

Most docs won't have the time for a phone call, but can get an 'underling' to type up a letter to that effect and sign it. Matter of fact, YOU can type the letter and request him to sign it if the insurance is still playing hardball!

GREAT NEWS, I'm thrilled that the findings are consistent with what's likely going on and that this doc is referring you to the specialist you need!

[sadlisa]

That is awesome Vonnie! I am so happy you have a supportive doctor. I look forward to your progress and final diagnosis. Keep us posted. Thia

[GingerLox]

Hey Vonnie........what did they tell you about the absent acoustic reflexes? My ENT doesn't know what to make of that finding. I read on the dizziness website that bilateral absent reflexes indicate a midline brainstem lesion.

How did they test you for the oculomotor finding?

I am going to post the dizziness website in a post by itself. It is very interesting!


Good Luck and Good News!
GingerLox

[GingerLox]

Hey Vonnie........Have they ever done the Brainstem Evoked Response Test on you?

Just curious.

GingerLox

[vheadley]

I believe that one of the tests they did was the brainstem evoked respose test. The ENT doc didnt comment on the absent acoustic reflex finding. I again didnt get to read the results until after the appt., He gave me the results as I was leaving. He just said that the audiologist recommended the same thing he did, seeing a neurotologist. I am not sure exactly what the brainstem evoked response test showed, the results were kinda hard to interpret as to which test told them what. Update on the insurance battle, I spoke to the attorney for the hospital that I work at today and he is going to try to push the insurance company to approve the neurotologist. Maybe he can get some results, they sure arent listening to me. Keep praying for me, I pray for you all daily. Thanks again for your support, Vonnie

[tarlovian]

Hello to all,

I have recently heard about my headaches to be due to Csf Leaks. I have been very surprised.

I am also suffering from Tarlov cysts and till We found a recent articles about the contrary, were told of too much pressure making those dilatations of the dural tube to become symptomatic. But all procedure to reduce spinal fluid pressure has made patients to be worse.

finally a group of neurologists in italy discovered that there are Csf leaks in tarlovcysts membrane (dura-arachnoïd and pia) and that is the cause for the pain Tarlov patients are suffering from. We all have severe headaches, ear and balance problems, eyesight problems nothing is explaining...

We are told as having the whole meninges to be weaker than normally..;so, if Csf leak in the head, why not at the cyst level as those "hernias" are made of meninges.

did you heard of some publication about?

thank you....

tarlovian lost in pain land...



give us more info. that you had a leak from your "epidural" (that would seem went subdural) is believeable. your pure horror and its proximity to the cervical puncture is conclusive, presume you had the "somebody please kill me" headache. did you have any diagnostics done, saying neuroimaging? what treatment was done to fix the leak? caffeine, bed rest, epidural blood patch lumbar or cervical...?

your er experience is typical chronic leaker treatment and initiation. in fact it is the second most common symptom of a chronic leaker, doctor abuse.

it would not seem, at least face value, that there is no causal relationship between a spinal leak and cranial. if anything a spinal leaker, either traumatic or spontaneous, would have less chance of becoming a cranial leaker do to the fact that the spinal leak would reduce volume and thereby decrease intracranial pressure which in turn would reduce chances of a spontaneous cranial leak.

LauraL840 has good words for you. it would seem from your story that you are in it for the long hall. begin by being your own doctor. take responsibility for yourself, which it appears you have begun with your estimate of your er doctor. like Laura said, you've got a lot a reading to do. keeping track of your records in the manner she suggested is important too, not only for that part of your own learning, but also as presentation to physicians it conveys that seriousness that you take for your own care, that the doctor is an adjunct to you in the professional care of your being.

importantly. consider your experience of the cervical puncture. if your cervical meninges did not seal post haste the puncture, without significant necessary consideration, what makes you think your lumbar meninges which contain significantly greater csf pressure will after the LP? not to say it will not, just that the risk for it not to is greater.

w/out knowing your treatment for the CP leak, i would not definitively advise. but would suggest otherwise that an LP puts you in particular w/ your history at greater risk for developing another spinal leak. since i am a spinal leaker better versed in spinal leaking and treatment, i know little of cranial leak methodology. localizing cranial leaks is more important than spinal for conservative treatment, say epidural blood patch, as that can be administered to the spine w/ good effect w/out knowing where the spinal leak is.

should you go ahead w/ the LP, have a precise location of puncture made known; mark it w/ a water proof marker. should you need a glue patch, the exact location will be marked so imaging for a glue patch will be superfluous.

be educated on imaging procedure. like what you should do physically to better increase the odds of leaking during imaging so the contrast will migrate though any hole if it can and the imaging be successful.

and post LP, i would stay down a good 5 hours to minimize your chances of a spinal leak. and hey, ask the doctors why they can't give a glue patch right over the LP w/ the same needle as it is withdrawn from the dura. not that i suggest it, but i wonder... and minimize use of your abdominal muscles for a good month post LP. (i even use my arms to get up from and down to a prone position.) don't blow your nose. dont' lift heavy items. don't strain on the toilet. no aggressive sex ("man on top") for a while.

make sure they note your opening pressure when the LP is performed. and a sample of csf is drawn for analysis. and if you are laying on your gut when the LP is done; nothing under the stomach as this distorts LP pressure. keep your neck and spine straight; head to the side or tilted back will increase csf pressure down spine and distort pressure reading.

[vheadley]

Sorry its been a while since I have posted. My DH was in the hospital for 5 days, he had to have his gall bladder removed ( ouch ), but hes home and feeling better. I havent felt great lately either, I have this upper respiratory cold going on. Guess what though, I finally heard from the insurance company and it seems there is a neurotologist in my network!! Hows that for wasting a lot of time. The doctors name is Dr. Putni, he is in Orlando. I have an appt for April 9, Finally!!!! Has anyone ever heard of this doctor? Id like to know if anyone knows anything about him. I will let you all know what happens after I see him, promise. The morphine is still helping with the headaches but I am starting to have some break through. Dosent suprise me though, I tend to get very immune to pain meds quickly. I am begining to wonder if theres any hope of ever actually being pain free. Thanks again for your support, I continue to pray for you all and hope you are praying for me. Hugs, Vonnie

[vheadley]

Hey everyone, I just wanted to correct something I said in my last post. The name of the neurotologst is Dr. Patni, not Dr. Putni, as I had originally thought. They gave me their web address when I made the appt. and when I went to check it out I found that the PMD had spelled his name wrong. I wanted to make the correction just in case it made a difference in whether anyone recognized the name and knows anything about them. The website sounds like they have a pretty well established practice, hopefully they are competent, LOL... Another thing that id like to update you on is that the last time I saw the neurosurgeon he suggested that I wean myself off the Topamax and neurontin. He suggested they could actually be making things worse. I was unable to do that before my PMD prescribed the morphine, the headaches were horrible without the Topamax. Since I have been on the morphine I decided to give it another try and have been able to wean myself off the Topamax. The neurontin is another story! I have a lot of neuropathic pain that stems from nerve damage from all of the whiplash injuries over the years. Even with the morphine if I stop the neurontin I still get that feeling in my arms and legs like im plugged in to an electrical outlet. It is HORRIBLE!! So I guess that the Topamax will be the only one that I can cut out. I have read so much on here about the negative effects that Topamax can cause, I am glad to be able to live without it. I am however starting to gain weight already, that is a huge problem for me. The extra weight causes more pain, I guess from the stress of the body having to carry it around when it is all so injured. I am almost considering to restart the Topamax again, just at a much lower dose than 200 mg. Anyone have any advice on that or how to help with the weight gain without the Topamax? I have lost 50 pounds this last year since the doc put me on Topamax, I just cant bear the thought of gaining it back. I have hypothyroidsm so loosing weight is extremly difficult for me. I just feel better overall when im not 240 lbs, no big suprise there, right!!! I also wonder if the reason I have been able to stop the Topamax is because the morphine is masking the underlying problem. What I mean by that is that it is an extremely strong pain killer and thats good but does the Topamax actually help with the cause of the headaches, not just the symptoms???? I am still having the vertigo and all of the other symptoms, just that the pain is 100 times better ( I know thats from the morpine, I also realize the morphine is as I said earlier just a bandaid, if you get what I mean). I am praying I will get some answers on the 9th when I see the neurotologist. Keep praying for me as I will for you all. Sorry this is so long I am having trouble sleeping tonight. I am trying to think of every thing I need to ask this new doctor and write it all down because I know ill forget if I dont. Good night and hugs to you all, Vonnie

[vheadley]

Hey guys, I just wanted to update you all as I promised. I saw the neurotologist on the 9th and it was a complete waste of time. He said that theres no way the fluid leaking from my ears was from a perilymphatic fistula, as there is literally only a few drops of perilymphatic fluid and it NEVER actually leaks to the outside even if the eardrum is ruptured. So he has no idea what is wrong. He suggested I find a plain neurologist that treats migraines. Like I havent been there!!!! So I spent the last 2 days in bed crying and feeling hopeless. I really thought this would be a step in the right direction. I am finally pulling myself up and wrapping up that pitty party ive been having for myself today. I got up this morning and printed out every neurologist shown on my provider network and im in the process of calling each one individually and asking if they treat CSF leaks, intracranial hypertension, or Chiari malformation. Suprisingly a few do but even though they are on my provider list they are not providers for my insurance, GO FIGURE!!! Just pray for me to find the strength to keep this battle going. My leave from work ends on May 5 and the insurance company has denied my short term disability claim. So I am running out of time and money. I continue to pray for you all. Hugs, Vonnie

[vheadley]

Sorry I have MIA the last few days. My insurance requires me to get all my meds by mail so I have been out of morphine for about 5 days now. My headache has been wreaking havoc. The meds got lost at the post office. I could have kissed my mailman when he knocked on my door this morning. My husband took the tracking number to the post office and it turns out he had delivered it to the wrong address, so he went and got it and brought it to me. I told him I could kiss him and he looked scared (I think he thought I was going to, LOL). Any how, the last time I posted I was searching for a neurologist. I did find one and I have an appointment on Friday the 25th with Dr. Cambridge in Winterpark. According to his receptionist he treats CSF leaks, IH, and Chiari. I explained to her I need a doctor who could differentiate and diagnose IF any of these conditions apply to me based on my symptoms and my test results. She was very encouraging and told me to be sure to bring all of my results because he would want to look at everything. I am trying not to get my hopes up to high, but I am running out of time. I have to go back to work on May 5 or I am going to loose my insurance, job, and everything else i own. Please pray for me. I know you all are and I appreciate it so much. I continue to pray for you all daily. HUGS, Vonnie

[vheadley]

I had my appt. with Dr. Cambridge today. Things went well, I think. He lacks bedside manner a bit, but seemed very knowledgeable. He was blindsided I think with the amount of questions I had (30+), I had it all typed out and just handed them to him. He then began to lecture me on being obsessed with every tiny detail and how I would never get better doing that. I explained to him that thats what happens when doctors leave their patients stranded and looking for answers, As the only one I seem to ever get is "I dont Know?" He did however try to aswer as much as he could. Basically he said not to worry about a Chiari Malformation because he saw no evidence to support that. He also said that the only real thing that he saw that concerned him on all of my reports was that possible pseudotomor. He says hes going to try to help me get rid of my headaches, THATS A FIRST IN ITSELF. No other doctor has even offered an attempt. He says I have chronic daily migraine (or so he suspects) and that it can take a while to get them under control. He started me on 500mg daily of Depakote ER and wants to see if it helps. It seems thats about the only one in the migraine arsenald that I havent tried!! If theres not any improvement in a month then he said he would have to do a LP to check pressures (he does feel that should have been done), he also said if they do a LP it will include a blood patch !!!in hopes if there is a leak it will find the right spot and stick (since he cant patch at the level of the original leak, he agrees to close to brain stem). So He seems like hes not real open to pts. educating themselves, I dont like that!!! But hes gonna have to deal with that! At least he seems to know what hes talking about, and hes willing to treat me. So YAY!!!! Maybe theres hope, Keep praying for me. I think maybe I might find some progress with this doctor, only time will tell. He said I can go back to work If Im up to it on the 5th. He gave me a release letter and said it was up to me whether I used it or not. So pray that I can go back to work, I really need that financially... Thanks for all your support, HUGS, Vonnie

[sadlisa]

Vonnie,

I hope the meds work for you and you can get back to a normal life. Many of us can relate to the financial strain this places on us. I too want to work and be back to some normal life. Good luck, Thia

[vheadley]

I have to admit I was very sceptical at first. I have been taking the Depakote for 4 days now and I am feeling SO much better!!!! I cant believe how much of a difference it has made. I am planning to go to my hospitals HR office tomorrow and get the paperwork started on going back to work on May 5. Thats when my leave ends and the doctor wrote that I could return on that day, he wanted me to be on the meds a week or so to make sure I tollerated them and in hopes they helped. I am actually starting to feel alive again. I am so looking forward to going back to work, I cant even tell you. I love my job and have missed it so much. The irony of this whole thing is that my 12 year old daughter has been on Depakote since she was 5, So the medicine I needed all this time has been my house right under my nose and I had no clue!!!!!! Tell you anything about my luck. I always say if Im going to do something you can bet ill take the hardest route. LOL!!!! I am still praying for you all, Keep me updated on how everyone is doing. HUGS!!!!! Vonnie

[LauraL840]

Vonnie, can you be more specific on how the depakote has helped?

Has it helped the HA or the stress associated with HA?

DH is having a REALLY tough run with HA for two weeks now. He's been in bed last few days and has NOTHING that he can take for pain and no way to get any relief! We're trying to call in and get a couple different meds 'scripted' to him so he can cycle through them in hopes to avoid rebound and still function. He can take opiods, but would prefer to avoid them. Doesn't leave us with much, but the last couple of days he's said if he even had morphine he'd take it. Last week he said he wouldn't go near the stuff (too potent)... :rolleyes:

[vheadley]

I am sorry that its been so long since ive been on. I have been working since the 5th. I am just exhausted when I get off. My body is deffinitly letting me know how lazy I got during those 12 weeks I had off. LOL! I am still doing really well on the Depakote. I really dont know HOW it worked I just know that almost from the very first dose that I took I havent had a severe headache. I am still struggling with nausea and vomiting at times, but thats nothing when the headaches are so much better. I cant even tell you how hard and stressful my job is but Im going to try to explain a little so you understand how much better I am. I work in an endoscopy unit, there is only 2 nurses and one tech in out unit. We do on our busy days 25-30 cases, usually in an eight hour period (we usually get them done within an hour or so of time to get off). I actually took a pedometer with me one day and I took in excess of 20,000 steps in one shift. Going back to work for me meant that i had to be able to function at that level without missing a beat. SO FAR I HAVE, AND WITHOUT A HEADACHE!!!!!! I am still taking the morphine with the depakote but only once a day in the morning now. The neurologist said to continue taking it until he gets the Depakote dose just right. I have cut out my nighttime dose on my own. I am really doing well, I feel great compared to what I was. It is like a miracle for me. I dont know if it means that im not leaking and thats why it worked or what, I just know that it helped me. I am still praying for you all and I hope you keep me informed. I would advise that if your struggling with headaches that you talk with your doctor about it. Depakote is a seizure medication thats FDA approved for migraines. I dont know if it will help any of you or not, but it may be worth a try. Its at least worth asking your doctor about. HUGS to you all.... Vonnie

[vheadley]

I know I havent been on in a while so I wanted to update you all. I am still doing very well. I have an appointment with the neurologist that put me on the depakote on Tuesday. I think he will probably have to raise my dose a little but it is still working wonderfully.. I am having very mild breakthrough headaches in the evening after I get off of work, but nothing like they were. I build up tolerance very fast but I really dont think thats the case this time. He told me that my headaches were so out of control it could take up to 2 years to get them totally under control and get the meds just right. I also heard from the short term disability insurance co. today and the letter said that my appeal has been approved. I am so glad about that I cant even tell you. Ill wait to celebrate until I actually get the check, but its good news none the less. I feel like a new person since ive been on the depakote and I have on my own cut the morphine dose thats prescribed at night out for the most part. If I have a really hard day at work I sometimes take it but its usually from back and neck pain. The headaches I get on occasion now are only about a 2 compared to the never endning one that I was having that was a 10 at all times. I cant tell you how much all of your support and prayers mean to me. I will continue to keep you updated and read your updates as well as continuing my prayers for you all . Please continue to pray for me, I know my battle isnt over yet. I love you all like family!!! HIUGS to you all. Vonnie

[vheadley]

Sorry I havent been on for a while, again work is really draining me. I also have some bad news, I am really scared this time. I swerved to keep from hitting a rabbit on my way to work on Thursday and long story short, I hit a tree head on. Totaled my SUV and I am in so much pain. Got a horrible bruise from the seatbelt, but thank God I had it on. Bad news is that for 2 days I have had a nagging headache. Not a migraine but I am really getting worried. Please pray for me everyone I need it, not just physically but emotionally. I am so depressed, it feels like I take 2 steps forward and 3 steps back. Like what did I do to be punished like this? I know that sounds horribly selfish in light of what some of you are going through but I cant help it. Every time I get a little relief its almost like I am being teased because it gets ripped out of my hands. Something bad always happens. I know I have to get out of this little pitty party, I am just really scared. I have to go back to work tomorrow and I dont know if I am going to be able to cut it, and I cant afford to loose my job. I just went back to work and they have been great, but a nurse thats not working isnt helping them. They need me there, doing my job. If Im not im useless to them. I have so many emotions right now, I already have some PTS from the other accidents and its kicking in again. I truly am scared to get behind the wheel. The other accidents havent been my fault or even anything I could have avoided but this one was just me, the rabbit and the tree. THE TREE WON. Please pray for me. I love you all so much for your support and I know that I can count on you to storm heaven for me. I am still praying for you all, just a little unsure what to pray for myself. I feel sometimes like i am being punished but dont know what for. I guess forgiveness is what I need for even feeling that way. But everytime I get a little relief something bad happens and rips it away. Sorry this is so long, Thank you all. HUGS, Vonnie

[Concerned Gal]

VONNIE! I saw you mention this on the other thread (ignore my comment there).

All I can say is that the world works in mysterious ways. Maybe that rabbit was meant to be there. Not sure why, but what else can you think.

I know you are concerned about losing your job, but you are returning after your leak episode and now you have had a major car accident. That alone would cause someone difficulties.

I guess you just need to take it easy, one day at a time. The headache might not be leak related. Your body ploughed into a tree so there would have to be some muscular issues related to this, especially if you have whiplash. But if you return to be concerned, demand, beg, plead and get yourself into Drs asap.

Thinking of you...

[vheadley]

Thanks for the post. I did see the neurologist today and after some convincing the doc agreed to do an MRI of my brain. He said that after hitting a tree at about 40 MPH or so it couldnt hurt to check if any further damage had been done. GO FIGURE!!!! I think after today I have decided I again need a new neuro doc. But like you said one day at a time. Thanks for your post. I am continuing to pray for all of you. HUGS, Vonnie

[Michelle ANNE]

Vonnie - Just wanted to let you know that I am praying for you. I'm praying for healing and peace. I hope your MRI looks great. It doesn't surprise that you would have a headache and general soreness after your accident. Hopefully after a few more days you'll be feeling good again.
Michelle

[vheadley]

Thanks again for all of your support. I am feeling much better now that the initial soreness has worn off. My MRI was good, there has actually been improvements since the last one. The fluid in my right mastoid has almost totally cleared up and the pseudotumor they saw before is almost completley gone (they arent even sure its there). So thanks to all of you for your prayers, I am doing much better, physically and emotionally. Love you all, HUGS, Vonnie

[vheadley]

I just wanted to touch base with you all. I am wondering something I thought maybe you could help with. I am starting to have the headaches again since the accident. they are different this time. My neck burns and I still have the extreme pressure feeling in my head like my skull is going to explode. Its just not as severe as it was before the Depakote, thank God. The neuros attitude about it was oh well you are on all the meds I can give you so I dont know what to say. I am sure in light of the improvements on the MRI hes going to think Im crazy when I say the headaches are coming again. Should I try the abdominal binder again. They really helped last time with the headaches but after I had been wearing it for a while was when the pseudotumor thing came up. I have always been scared that I artificially increased the pressure in my head to much by wearing the binder and that caused that. Am I grasping there? The meds just arent helping much and I feel like I need to try something else. Hope yall can help. I hope everyone is doing well. I am still praying for you all. HUGS, Vonnie

[xtine]

I can't really advise much but if you thought you had a perilymph fistula it's possible that it reopened and is causing the symptoms you describe.

christine

[vheadley]

Sorry its been so long since ive been on. I just wanted to update everyone. I am actually doing pretty good for now, hoping that it lasts. I have only had one really bad migraine since being on the Depakote. It was last week, I realized that I had actually forgotten to take the Depakote, boy did I feel stupid!!! I had to leave work and everything. The worst thing with me right now is that I am really struggling with extreme fatigue. Not sure if its the meds or what but on my days off I can literally sleep ALL day and ALL night. Its crazy like I have never experienced before. But considering what I was dealing with I feel very lucky. I hope you are all doing great. big HUGS to all, Vonnie

[vheadley]

I wanted to update everyone on my condition. I know its been a while since I have been here, sorry about that. I have been working insane hours and not feeling well on top of that. With my chronic neck and back pain, headaches, and now the vertigo has returned with a vengance. My ears started bothering me really bad a few weeks ago so I went to the ENT doctor to have him check it out. It was feeling full of fluid again and I figured I should get it looked at before it ruptured again. Thats when my migraines got so bad last time. He did this pressure test where they put a probe in my ears and it checked the pressures in my inner ear. I have a high pressure in my right ear (the ear that bothers me and also the one that ruptured last time). He decided to send me to vestibular rehabilitation. I thought ok what in the heck is this but ill try anything. So I went to the first appointment and they did the evaluation. It was a real eye opener. They did a falls risk assessment on this computer thing where you stand on a moving platform and try to balance it. I was off the charts the lady said I have the fall risk of like a 150 year old if there were such a think LOL. I had actually fell 3 times in the 2 weeks before that visit. I messed up my left knee in one of the falls so now i got that to deal with. Anyways this therapy is very interesting, she says I have little crystals (I guess everybody does but they usually dissolve, mine didnt dissolve, they got stuck in my semi-circular canals somehow) and the point of the rehab is to get the crystals to move so that the fluid that is built up in my inner ear can circulate normally. thats whats causing the backup of fluid that I have and all of the vertigo. She said it could even be the cause of some of the migraines. GO FIGURE!!! I think it is actually helping although I have to admit I am a sceptic. I am hopeful. I go to the neuro tomorow again for a checkup and to get my topomax dose raised again. So far no more migraines, but I still have nagging headaches. Thank God they arent migraine type though!!!! Well I guess I have gone on long enough so Im going to go to bed. I hope you all are doing well. I only had the chance to read about Kims ordeal and I am just horrified at what shes going through!! I hope noonne takes offense at the post I posted in response to her problems I just feel very strongly that she needs help immediately. I am very concerned that her life is in danger!!! Love you all, Vonnie

[dreb]

Vonnie,

Someone I work with had what you are explaining. She had the crystals in her canals, with terrible vertigo. She had one procedure with the neuro (something about lying on a table & being moved around & manipulated alot???), and she felt much better. I had never heard of it until she told me about it. She said sometimes it takes more than one treatment to fix the problem, but she was lucky & was cured the first time around. That was probably about a year ago, and she is still doing well.

Sorry to hear that you are feeling so bad, and having to work so much through all of the pain.

Deb

[vheadley]

Thanks Deb,
It was helping me alot. Unfortunately my job wasnt working with me on my apptmts. and I missed so many that they released me. SOO. I guess Ill never know if it would have cured me or not. I do have some of the exercises that I can do at home on my own though. they are what you are talking about. You lay on a table and manipulate your head and some of them you are sitting upright. its freaky and I get horrible dizzy. The lady that was my therapist said she dosent know how I even drive cause mine is so positional. I said its probably cause I been hit so hard so many times, LOL. anyhow I am a little better. Sorry I havent been on in a while. I AM thinkin about you all and hope everyone is better. I work all of the time and it is all I can do to function daily. this is the first time I have even checked my email in over a month I think. I love you all. HUGS, Vonnie

[vheadley]

Sorry I havent been on in a while, as usual I have been working unrelenting. They are trying to kill me I think. I worked almost 20 hours the other day without a break. I am home today with a migraine (big suprise). I have made the decision to transfer from surgery to the ER. I wont have to take call there so I will be working much less there. I will work 12 hour shifts but only 3 days one week and 4 days the next. Now I am working 5 days a week and taking call 8 times a month that ends up being those 20-22 hour days. I just cant do it anymore. They get upset with me because I get sick but I am sick all the time because my body cant take the kind of hours Im working. In the ER when Im off Im done. NO CALL. I will have to work every other weekend but im taking weekend call now so whats the big deal, right. Im still having migraines, not as often or as severe and mostly when I am severly tired so I guess thats an improvement. The doctor has me on Inderal now and I think that makes me have more of a steady non-migraine type headache. I think its cause I already have low blood pressure and its making my blood pressure too low. I dont think Im going to be able to stay on it. My husband has been given the option to have a surgery for his neck that is called spinal "fixation" not fusion, its not FDA approved yet, we will find out on the 18th of Jan if it gets approval. Pray they approve it, its his only option for relief an hes in a lot of pain. If it works for him it is an option for me. The neurosurgon thinks my neck may be part of my headaches (DUH)!!!! Every level of my neck has herniated disks putting pressure on my spine why would he think that?? Thats my hubands problem its every level and they cant fuse every level or you have no movement. So pray for us both. I hope you are all well. HUGS to you all, Vonnie

[vheadley]

Just wanted to let you all know how things are going. I did transfer to the ER. BIG MISTAKE. I hated it.... It was the worst place I have ever worked. Only lasted 3 months. I had a migraine in the middle of one of my shifts, worked for 5 hours in so much pain the patients were asking if I was ok, and the bosses could have cared less. I finally told them I had to leave when I could no longer see the medication bottle labels and told them it was dangerous for me to be treating patients becaus I needed to be one myself. So I clocked out and checked in as a patient and got a shot of Dilaudid and Phenergan (good stuff). The next day I got called in and told that I was going to have to transfer to a department that wasnt so accute because they couldnt have a nurse working there that could deteriorate so rapidly. So I have been given 2 weeks off (without pay) to find another department to transfer to. I am alittle depressed but I am alittle relieved at the same time, I was miserable there. My husbands surgery was not approved by the FDA so its not going to happen. Now we dont know what hes going to do. Suffer till they come up with something better I guess. Sad to say but not a lot of options, hes in the same boat im in. Im off the Inderal so the headaches are better but obviously still there. Hope everyone is good. I just wanted to update you on my life. Love you all. BIG HUGS, Vonnie

[chip k]

I had a change in mental status back in October. About 5 days after that happened, a whole bunch of fluid drained from my right ear. It was there in the mornings when I would wake up for about a week and then went away. My doctors see no correlation between what happened to my change in mental status and the leak from my ear and I just can't believe there is no correlation. Back in 1987 I had a car accident and I hit the top back of my head on the right side. What I am wondering is could a temporal bone fracture not heal completly and allow a csf leak 20 years later through the ear if one had preasure on the brain for some unknown condition? From what I under stand, for it to be a csf leak through the ear your skull would need to be compromised. There was no ear pain and no evidence of a rupture in my ear drum so the fluid would have come from the outter ear canal. Is that possible with a CSF leak??

[vheadley]

After all ive been through and been told thats not possible id say anything could be possible. Look up IH or pseudotumor cerebri. thats one of the things they think I could have. The fluid comes and goes. But I think there would have to be a comprimise in your eardrum for the fluid to get from your brain. although they tried to tell me my eardrum wasnt ruptured and when I held my nose and blew it made a squeaky noise, lol, true story!! Apparently there was a flap they couldnt see it unless i did that and blew the flap open... so maybe they just didnt see it. All I can tell you is research for yourself and dont depend on the doctors for answers. lots of good resources here. good luck.. BIG HUGS... Vonnie

[vheadley]

I just wanted to catch everyone up on how im doing, I am sorry I hardly get a chance to get on but I think about you all constantly. I started a new job at a hospital in the county over. Its about 45 minute drive but its a great hospital. I have a new problem though.. I think I may be anemic. I am craving ICE all the time and I know that sounds weird but its a clinical sign of anemia. I am also very weak and tired all the time. I mean I cant get enough rest. I started a new thread about it. any input will be appreciated. Anyhow I just wanted to say hello and im still here. I am still having the headaches somedays they are low pressure (im guessing as its better if i lay down) and some days they are high pressure (better when i sit up). I am still on the diuretics and trying to achieve that perfect balance and never quite doing so. But im making it and im working but this new thing is really throwing me. I am so tired it literally hurts. I just dont know what the connection is but I know there is one. You know how that goes.... I love you all and will check back. BIG HUGS to you all.. Vonnie

[vheadley]

Turns out I am anemic. Not just the regular anemia, my B12 is also low. I have pernicious anemia. They have started me on B12 replacement. I dont know if there is any cause/relationship but I am sure that it explains some if my symptoms. I am soooo tired all the time and apparently it has to do with normal functioning of your nervous system as well. So I just thought I would update you all. If anyone has any advice or words of wisdom for me let me know. Love you all. I hope you are all doing well. Big Hugs to you all. Vonnie.

[Robbysmom5]

Hi Vonnie-
My mother-in-law has this. Her neurologist gives her shots of B12 and they really help her feel better. I hope they help you too!

[vheadley]

They didnt put me on the shots but I am on oral B12 and it is helping some with my fatigue. I havent had any blood work done since but my thyroid was off too and they upped my doseage of that too. I am going to have to go see an endocronologist about that if I ever get a chance. I am on the road working so much now. I am feeling a little better though except for having to deal with all of the altitude changes from the traveling, that is proving to be a challenge. Hope everyone is doing well...love you all, BIG HUGS Vonnie

[xtine]

hi vonnie- i've been on iron pills for over a year. it takes a long time to rebuild your storage however it has really helped with my healing. my leak use to be a lot worse but now is much better because of iron and rest.

i take a heme form of iron which was the most effective for me. if you do supplement, make sure you find out what form works for you.

regards,
christine