Frustration after visit with neurosurgeon

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Frustration after visit with neurosurgeon

Postby robertsmanta » Fri Feb 24, 2012 11:08 am

I just returned from my first visit with a neurosurgeon, and I left feeling frustrated. When my doctor that referred me to NS initially told me I had a syrinx, I actually felt relief after months of other doctors insinuating that I had anxiety issues. Then, in a matter of a few minutes today, all the frustration and self-doubt came back. I could feel the skepticism oozing from the neurosurgeon from the beginning of the visit. I felt like I was defendant attempting to prove my case. She had me go through the same touch-your-nose, tap-your-knee tests that the previous doctors had done. For me, my symptoms are transient. I feel different symptoms each day, and sometimes I feel fine, so I often pass these tests fine. Today I felt fine, and she didn’t notice anything out of the ordinary. Then she went over my MRI and her conclusion was that there was no Chiari and that my syrinx was “too small” to cause any of these symptoms. Essentially, there was something else going on, according to her. After all, she said, most syrinx that she sees "are bigger than mine". I’m fine with her Chiari analysis, but in an instant I felt like all my answers and relief vanished because my sryinx size didn't meet some personal experience-based perspective that she had. I didn’t get the feeling that she had a workable grasp on syringomyelia.
I left completely frustrated. My doctor (the good one) is going to work on getting a referral for a second opinion (which is easier said than done in military health care, but I'll keep my hopes up). From everything I’ve researched, there is no correlation between syrinx size and symptoms. Is that correct?
Has anyone had similar experiences/frustrations? What have you done about it?
By the way, my syrinx is 15 mm in length and 2.7 mm wide. Is that “too small” to cause symptoms? I'm still learning about this issue, so I may be completley off here.
Thanks.
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Re: Frustration after visit with neurosurgeon

Postby gunflint » Fri Feb 24, 2012 4:36 pm

I've said it before and I'll say it again. You must do all you can to see a NS that has a lot of experience with SM. The first idiot NS that I saw after my initial diagnosis said that I should continue to work until my hands went numb then come back and see him. The next two NS's I saw are experts in the area of SM and both recommended decompression surgery soon before I suffered any more nerve damage. On a side note, SSDI agreed with the experts. I know next to nothing about military health care. Is it possible to see someone at Bethesda?
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Re: Frustration after visit with neurosurgeon

Postby AKShel » Sat Feb 25, 2012 4:41 am

Gunflint,
I sent you a PM about NIH. Please let me know if you did not get it. TY

Shel
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Re: Frustration after visit with neurosurgeon

Postby sarahlynn » Sat Feb 25, 2012 10:39 pm

I am sorry the appointment did not go well. I have been through that, although not with a NS yet. I am waiting to hear from NIH whether I am a candidate. If not, I am on to find other NS in the DC area.

Is it permitted to reach outside of military doctors to get help? I do not know how military health care works.
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