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-   -   New & frustrated (https://www.neurotalk.org/arnold-chiari-malformation-and-syringomyelia/156120-frustrated.html)

sboyce 08-27-2011 08:28 PM

New & frustrated
 
1 Attachment(s)
My husband & I have been on a VERY long journey this past year, and it's
starting to look like a syrinx may be the the culprit behind a lot of his
issues.

Backing way up....my husband is active duty military and has had hearing loss
for many years. Getting close to retirement he decided to finally have it all
documented for disability rating. Come to find out, he had a brain tumor!
Something called an Acostic Neuroma which actually forms on nerve tissue. He'd had horrible headaches and neck stiffness for years, so we both attributed that to the tumor. He had his surgery to remove the tumor in October of last year. That surgery has since opened a HUGE can of worms! He handled the surgery wonderfully, but started having other strange symptoms within a week. His biggest complaint wasn't his head, but excruciating bilateral arm pain. He actually started guarding his arms to keep anybody from accidentally touching them. The symptoms progressed from there to numbness/hyper sensitivity of both arms, muscle weakness and loss of mass, decreased ROM, etc. It's really bizarre b/c you can literally pull his arm hair without him feeling it, but if you just casually stroke his arms it hurts like hell. The headaches have continued along with the neck stiffness and back stiffness. The surgery for the AN left him completely deaf on one side and adds to his balance issues. We've been to so many "specialists" (quite a few of them complete quacks) that we've lost count. We've heard everything from ALS, MS, Sarcoidosis, arthritis in the neck, mental illness, etc. Bottom line is that nobody knows. We finally got in with a well known neuromuscular specialist who conducted electrocution testing (Nerve Conduction/EMG) for a 2nd time last week. The nerves were normal
and the muscles only showed mild abnormalities. So he reviewed a Cervical MRI from December and noted that the area of C5-C7 is essentially flat with what looks like a syrinx. We also remember one of the quacks remarking off the cuff that he found it interesting that my husband had Chiari which really was no big deal. It's very frustrating that the radiologist didn't see it on the
original MRI and that my husband is likely going to end up with permanent nerve damage because of it! Any insight would be greatly appreciated!
I'm attaching an image of his latest MRI from this week. Does it look familiar to anybody?

chiarichic 09-03-2011 01:20 PM

New & frustrated
 
First of all, your husband is a lucky man....to have such a loving and caring wife !!
I am a wife and mother of 3 who was diagnosed with Chiari 8 yrs ago. I underwent decompression 7 yrs ago and was fairly stable for a few years. My symptoms have slowly crept back and am now in the process of reevaluation for the next step.
My suggestion for you is to visit the Wisconsin Chiari Center website.... http://www.wichiaricenter.org/
They will contact you by phone or email and likely ask you to send his recent films and medical history. I feel like the best hope for any possible reversal of symptoms would be with a Chiari Specialist !!

Good luck and God Bless !!
Melinda


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