Need advice 3rd neurosurgeon

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Postby angie7 » Fri Jun 29, 2007 7:43 pm

Glad that you sent off to TCI. A specialist is a must when dealing with SM, IMO. I too was told by the top NS in my hometown that my syrinx was not causing my pain, I didnt have ACM, he didnt know what was wrong but he couldnt do anything until I could no longer walk and to come back then!

That is when I started researching specialists and found Dr Oro. I say him 1 month after dx, and he dx me with ACM, after a cine mri found that I had minimal to no flow of csf to my brain, surgery was suggested and I had decompression surgery the following month.

Even if you do have some herniation, unless it is the classic 5mm+ herniation, doctors dont consider it a problem when it could be. My hernation was at 0mm but still enough to block csf flow.

Hope you hear back from TCI shortly with some good news!!!
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Postby gncrzy3 » Sat Jun 30, 2007 1:01 am

What is TCI??
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Postby hhhhhmom » Sat Jun 30, 2007 2:50 am


I just wanted to add my two-cents. My son has the slit-like syrinx also. He is one of those folks who has a relatively small syrinx and big symptoms. He has severe damage to his nerves due to this and I wish I had known that it might have been avoided with surgery several years ago when this first came to light. We just wanted to be "sure". Now we are but a lot of damage has been done along the way.

P.S. There are good doctors out there--ones who will explain things so you can understand and ones who really care about the quality of care their patients receive. We just have to keep looking until we find that doctor.

Good Luck!
Mom of Harley, 15, with "small" (can't-cause-pain) syrinx/acm.

Postby toport20 » Sat Jun 30, 2007 9:46 am

gncrzy3 TCI is the chiari institute. You should check out their videos. Hope this helps.
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