differrent opions on surgery

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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differrent opions on surgery

Postby gue29291 » Wed Jan 23, 2008 5:04 pm

My daughter is 6 years old and was diagnosed with chiari and syrinx found on an MRI that was done because she has some orthopedic problems and ortho wanted an MRI. have seen 2 top NY neurosurgeons after getting full brain and spine MRIs . They both agree not to do any decompression for the chiari because she is totally without symptoms. However, one says she has a tight fatty filum at the bottom of her cord which he wants to just monitor for now. He does not think it is a problem. However, the other wants to do elective tethered cord surgery to prevent future problems that he says might occur and if they do could be irreversible. I have a third appointment with another NYC neurosurgeon who hopefully will agre :?: e with the opinion to just monitor for now. In the meantime has anyone else experienced something similiar with their child and how did you make a decision. Thanks so much.

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Postby angie7 » Wed Jan 23, 2008 5:11 pm

Well since your in NY, I would contact TCI and get their opinion. They are leading experts in CM and their opinion is the only one I would listen to anyways as they know this disease inside and out.
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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Location: Florida

Postby brianfsmom » Thu Jan 24, 2008 7:56 am


I keep trying to send you a PM but they keep getting stuck in my outbox without going to the sentbox.

I was trying to say that I would get as many opinions as I could. Also, are you in the NY area? My son had his surgery in NY so I was wondering who the doctors were that you saw.

I thought all of the ones that we saw were very knowledgeable with chiari and SM - however, tethered cord never really came up, aside from one saying there was no evidence of it on the original scans, so I didn't discuss that aspect with them at all.

Good luck, hope you get a solution that you feel comfortable with.
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