chiari/syrinx, AND spontaneous CSF leak-help

[oriolesfan]

Hello,
I am new here. A brief history-symptoms started in 2005-my child was born in January (I did not have an epidural because there was not enough time) and in Feb I had a brachial cleft cyst pop out on my neck. About a month after my neck surgery- in May/June, I started developing headaches, head rushes, better when I lay down, etc. Anyway, I was misdiagnosed several times. I was lucky that I had the incidental MRI from my neck and it was determined that my brain had sagged down over 20mm and I was developing a large syrinx. The neurologist told me I had Chiari, ,maybe a leak, then I didn't, then I did, etc. finally referred me to a neurosurgeon after the cisternogram did not show a leak. The neurosurgeon told me he thought I had "acquired" Chiari through a spontaneous CSF leak, but he felt I didn't have a leak anymore, but my syrinx was taking up half my spine. They told me I could be paralyzed. I got a 2nd opinion from a dr. out in California (I mailed him my MRI's) and he said I still had a leak. I didn't know what to do. I went ahead w/decompression surgery (craniotomy). But-you guessed it- the symptoms came back a month later-the familiar pain when standing, better when laying down. I tried to call the neurosurgeon's office several times but they kind of brushed me off, saying this was "post-operative". I went all the way to the Mayo Clinic in MN just 2 mos. ago and saw Dr. Mokri. I had another cisternogram (they couldn't even get the puncture in, my pressure was so low-it took 3 different people) where it was determined that I have a leak in my lower spine, coming out through my kidneys. And I recently went back to work this past August from staying at home w/my child. I just can't continue all of this pain anymore. I couldn't afford to stay at the Mayo any longer-I was up there for over a week and a half. Now I need a myleogram. The neurosurgeon at the Mayo told me he has NEVER seen a patient in 20 yrs. w/my diagnosis: he said he feels I was born w/a mild Chiari, but then somehow developed a spontaneous CSF leak, which caused my brain to sag tremendously, and caused the syrinx-which, in effect, is Chiari, a CSF leak, which caused an acquired Chiari. Oh-and I drive over 120 miles a day to work. The pain is getting so bad. I have to lay down on the floor behind my desk sometimes, or I just put my head on my knees. I don't know how much I can continue this. I wish I would have never trusted my local dr. I know I had a large syrinx, but maybe I should have insisted on more tests, I don't know. I am supposed to go back to this local dr. -just to see what he can do-he still doesn't believe the Mayo! I am afraid I might get fired from work (even though I told my boss about this before I started). The pain of skull surgery really pales in comparison to what I experience now on a DAILY basis. Oh and the worst part-my brain is now even lower BECAUSE of the surgery-there is all this room back there now. Please help-should I quit my job?, -I know all the gossipers are talking about me-I had to leave early 2 days last week. I am so scared and this is just consuming my life. Thank you for any help-finally, I feel I am not alone in this because of this website!

[cacoelho]

Hey Oriolesfan
I am pretty new to all this stuff and wish I could give you a bunch of helpful advice but I'm pretty clueless myself and learn as I go.
Have you ever had a bloodpatch? they never found where I was leaking from but an MRI of my head confirmed that I was leaking and sagging so they decided to give me a really high volume BP and even though the first one didn't plug the hole it restored some pressure to my head & spine and it felt so much better. It took a second one to plug me (at least I think it did, the headaches are better but I still feel funky, but not nearly as much pain).

Also I can't imagine working with a leak and those excruciating headaches. It must be awful. Do you have any disability insurance, sick leave etc. Could you possibly work from home or part time? I've gotten quite used to lying on my back and typing on my laptop. I know it sounds ridiculous but I just couldn't sit up for even a few minutes.

What is your insurance like? Do you have to go to the local doc you don't like? Be a squeeky wheel, keep calling, keep complaining, keep bothering your insurance. I went through a month of nagging and it payed off. They need to know that the pain is unbarable. Hey a few tears help too.

Please, please keep us posted. I wish I could give you more helpful advice.
Alice
PS: I'm sending some warm fuzzy hugs your way

[vli1972]

Oriolesfan,

I feel your pain and no one can understand unless they have been through it. Much like Alice, I am new to this website (which I feel is wonderful as well) and wish I could give you lots of advice too . . . I am sure you will get some from many others. I just want to give you my support and understanding for now. Like Alice, I had two blood patches (my brain was also sagging after being misdiagnosed for 2 1/2 months). The first one didn't take, the second one seems to have done the trick so far, but it seems to be a long road to recovery for all of us because I still don't feel like myself either and get headaches almost daily (just not at the level they were - I can function now!). Check into the lumbar BPs - they seem to be the least risky.

Take care and keep us updated.
Ginny

[guineapig]

oriolesfan,
i’m on some good drugs, so don’t hold me to the discontinuity of my post. not to mention my chronicness of csf stuff.

re neck surgery. i am not familiar with “bracial cleft cysts”. but know this, that spinal surgeons are known to be the most leak causing physicians out there; not considering lp ordering doctors.

who is your californian physician who reviewed your case? wouter?
what did they mean by “coming out though my kidneys”? i know of their anatomical proximity. but if the imaging shows csf trails around your kidneys? i am trying to remember if my ct-myelograms even included me kidneys in the pictures.

make sure your myelogram includes contrast agent. and if it is a ct, which the contrast is introduced via lp (another leak thank you) make sure to roll over a few times right before imaging. and it doesn’t hurt to consider sitting up right a while before the imaging either, but that it might reduce the potential for csf to flow from any possible holes in the cervical spine and maybe the thoracic. doing so enabled the 2nd ct-myelogram to pick up the multiple lumbar leaks i have/had when the first lumbar imaging 3 hours earlier did not. my anesthesiologist blood patcher recommends bearing down before imaging as that would get the csf w/ contrast agent to flow better from any leak.

remember, one does not need neuroimaging to diagnose a leak, only to confirm it with the eyeballs, be it yours or the doctors. you can get a blood patch and many do without imaging confirming a leak. in fact it could very well be advisable to do so if, money is an object and if one is susceptible to leaking another hole in the meninges necessary to insert the contrast agent is contraindicated with clinical diagnosis.

re quitting your job. if you are a chronic leaker, that is you are indeed leaking and the usual conservative measures (treat symptoms first say with caffeine, restricted physical endeavors or one blood patch with the hopes of quick recovery w/ body healing), most work will only worsen things. if you are to stop working, before you do, look into state disability first. also, make sure any loans, particularly mortgages are insured for unemployment due to health reasons or disability in general; check into your credit cards as well as those of your spouse's for the same thing. look into your medical insurance coverage, if it is from your work, look into cobra. think about paying ahead with your credit cards that you have opted for that coverage for sick employment leave.

[vheadley]

I am new here too and I know nothing about Chiari but I feel your pain about the work situation. I am going through the same thing. I suggest you take advantage of the FMLA if your state offers such a thing. Also If you have short term disability insurance maybe you should consider applying for some time off. I am considering that myself. It is always a battle when dealing with insurance companies but stay strong and dont give up. You have to fight the fight!!!!! We are beind you all the way!!!! Vonnie