8 mos post op & Dr says it's not Chiari!? Anyone else?

[knicoley]

Hi,

I am 8mos post-op. I have never had HAs & my CSF flow was normal. Surgeon did a fantastic job & said my brain was quite compressed. No complications post-op. I am better than I was before surgery, but still unable to work. My main problems are dizziness, vertigo, fatigue, nausea, labored breathing and a strangling sensation.

NS referred me to an otoneurologist. He says Chiari was not my problem, however is unable to tell me what my problem is. All he said, in a nutshell, is that there is something wrong with my brain (duh) and it needs reset. I asked if my brain had nerve damage from being scrunched up (not from surgery) and would just take a few years to recover. He said that is a myth. He said I can get better with drugs...Lamotrigene. Which not only has side effects that are the same as my symptoms, but 0.8% of people get a highly fatal reaction.

If that's not enough. the drug doesen't work if you are depressed. Well, I am very depressed. I have lost my job, home and boyfriend over this illness. I don't want to take meds, but I don't even have the option to try until I rid myself of depression. Catch 22, indeed.

He also said, my symptoms didn't even sound like Chiari to him. I don't know what or who to believe. I have read books, forums, and talked to Dr.s. Right for a year. Now, I feel like everything I have learned is being turned upside down. Or, this guy is totally wrong.

Anyone else experience this? Any insight? Very, very frustrated.

Thank you,
Knicoley

[selmaS]

  Here is a link to the clinical trials.....they change from time to time so this one may no longer be taking on participants, but u will have access to look at ones that are.

http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2010-N-0143.html

[linnielou232]

I understand what you are going through and it is so flustrating that NS out there don't understand Chairi.  I'm reading a book now which has surveys and there is so many % of people that have been diaganois with depression, anxiety.  I'm trying to understand living like this also.  Your in my prayers for better days ahead.
Linda :)

[knicoley]

They have checked my inner ear as far as looking in my ear. But, going for vestibular testing in 10 days.
My NS said that he had had patients with normal flow who got better after surgery. I wanted surgery, I wanted to do SOMETHING to get better, I was afraid of progressing. I was having breathing & swallowing problems before the surgery that scared me. Those have got alot better. I have had some improvements. I dont feel it was worthless regardless of what the otoneurologist said(that I had sugery for no reason)...which seems a bit inappropriate of him.
My NS also said there was alot of compression...it didnt block flow. But, I would think a scrunched up brain could cause problems anyways. My uneducated opinion anyways.
I will look into those trials. Thanks.
I am at a complete loss, I thought I just had to wait it out. Now, I am wondering if there is any hope at all of good health.

[selmaS]

  No, I think u need to do the tilt table test for POTS as well as a few other tests to detect that...a heart monitor will only tell u if u have  some heart irregularities. Have they checked ur inner ear?

U had normal flow b4 surgery? May I ask why they did surgery then, as it is done to restore flow????

I was confused I thought u were saying u had normal flow and that was post op.....

Yes, a chiari specialist is one of the only Drs that will see u at this point since u already had surgery,,,some will tell u if u do not have a virgin back they will not see u.

  Look into the clinical trials in MD, they take those that had surgery as well as those that have not, so no $$ worries there.

[knicoley]

Wow, I am really sorry about what you are going through. I have been lucky to not have pain. Just feel like I am intoxicated all the time & NOT in a fun way. I am really scared to take meds. One of the side effects of lamactal is suicidal thoughts...geez I dont need any help in that department. It is so frustrating having a disease that is not well understood. Thanks for your kind words & I hope things look up for you. Oh & my csf is fine always has been so that throws a wrench in the works

[knicoley]

Thanks. It was the oto-nl that said those things. The NS refered me after no improvement. No syrinx or ehlers no icp. Wore a heart monitor, would that detect POTS? Plus I am dizzy all the time regardless of position. Also, I have no pain...that might rule out the other things.
I thought my NS was a chiari specialist, he did a beautiful surgery & said it might not work since I had normal flow. But, I am questioning everything right now. I think the oto-NL is suggesting I have a form of atypical migraines (vestibular, non episodic, no pain). But everything he said is contrary to everything I have learned. I guess a 2nd opinion would be good, but this is the only place I can go because I have financial asst there.
Ugh!  Can a chiari specialist do anything for me, now that I have alredy had a surgery?

[Marybz]

Oh  and everything that Selma said too.

[Marybz]

Hi,
I feel your pain.  I'm almost 5 months post op from decompression with an additional laminoplasty(metal plate drilled into C5-C6.).  The pain is unbearable sometimes.  I have trigeminal nerve numbness.  I had nerve compression near the brainstem, that splits into the trigeminal nerves.  My M.D put me on Neurontin for pain and mood stabilization.  I was on it for 21/2 weeks.  On tuesday, I was so dizzy and my skin felt like it was unfire and I felt suicidal ( a rare side effect for Neurontin).  I stopped taking it abruptly, and all my preop symptoms are back full force.  I don't know if its from stopping the med cold turkey.  Of course, I don't want to bother my M.D or NS.  Sometimes I lose faith with my doctors too.  I'm waiting it out, hopefully this drug will be out of my system soon. If your post-op MRI was fine, I would think that your brain has to readjust to the new flow of CSF.  Where you checked for spinal stenosis, bulging discs, etc?sometimes that can hinder flow of CSF also.  Right now, the only thing that helps is Aprazalam(Xanax) for me.  It helps relax muscles and calm my nerves(literally).  Lorazapam does same, and has antinausea effect.   Have you had some PT for massage and hot packs, as those muscles were cut and are tight. I'll say a prayer for you and that time will heal you.  Let me know how your doing.  We are part of your family here. You have gone through a lot,  an antidepressant would help to take the edge off.   Did they check for inner ear issues?  Maybe your MD could be of help to get you back on the mend?  

[selmaS]

  Hi...I am so sorry u r getting this treatment, not knowing if ur NS was a chiari specialist, from what he is saying I would venture not.....

I would suggest going to a diff dr for another opinion.....

Had ur Dr ruled out a syrinx in all areas of ur spine, disk issues POTS, ICP, ceriocranial instability, ehlers-danlos and other related issues b4 ur surgery?

Ne of these related issues can cause some of the symptoms u listed.