Who to see for Chiari and autism in the northeast??

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Who to see for Chiari and autism in the northeast??

Postby LIZARD110366 » Sun Mar 23, 2008 1:16 pm

Hey, everyone. :)

I'm getting increasingly concerned about my son's symptoms as the weather prepares to warm up. He has had problems with body temp regluation for several years and is unable to sweat even when I can get him to drink enough. He also has trouble sensing thirst. It's still very cold out--40s, if we're lucky--and it's been extremely windy. He won't wear a coat and is content with just a sweatshirt over a t-shirt with cotton pants, and his skin is actually warm to the touch. Scariest of all, because of his expressive language issues, I have no way of knowing what "silent" symptoms he may have.

I think he needs another MRI and a nsg consult with a doc who "gets" the whole autism-ACM connection (and I know there is one). I'm in New England and need to know who to see up here. Thanks for any suggestions. :)

LIZARD :)
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Postby brianfsmom » Sun Mar 23, 2008 6:46 pm

Hi Lizard

My son doesn't have autism and I am only replying because when we saw doctors, one discussed the autism/ACM connection and said that he has done decompressions on autistic children. He's at Montefiore in the Bronx, Dr. Rick Abbott.

Also, I remember a story in our local papers last year or so about an autistic boy who was decompressed by Dr. Feldstein at Columbia, and some of his behaviors (specifially, I think he was quacking like a duck) ceased.

Hope that's helpful. I know you are well versed in this whole issue and may already have opinions on one or both of these docs, but I thought I would just throw their names out there for you. They're both in NYC, obviously, maybe that's too far for you.

By the way, where's ASAP been these past few days?

Good luck Lizard...
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Postby LIZARD110366 » Sun Mar 23, 2008 7:14 pm

Hmm...I keep seeing familiar names. :) I guess that confirms my "neuro-geekness." :) I doubt he remembers me, but I met Dr. Abbott at a hydro symposium years ago. I was a bit put off at the time over how gung-ho he was about Endoscopic Third Ventriculostomy to "replace" shunts when no one knew any such thing (and they have since proven to be less than the miracle he had painted them to be), but this is great info to have. I will definitely consider him. :)

I also heard Dr. Feldstein's talk from the conference last year and am thinking about him as well. So far, he appears to be the front runner if we can't get to Dr. Frim.


Thanks so much!

LIZARD :)

P.S. I wondered what happened to the site, too. I know EFA's site was hacked and littered with filthy porn, so they pulled it offline to fix the problem. I hope it was nothing like that! :(
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Postby brianfsmom » Mon Mar 24, 2008 6:36 am

I think Dr. Abbott likes to try new things. We didn't use him because at the time he was using a synthetic dura graft which he had only been using for three weeks, but was, as you say, gung-ho about it.

We didn't use Feldstein because he did NO dura graft. Our doctor was Mark Souweidane at Cornell in NYC, and we've been happy with the results. He also spoke to us of third ventriculostomies very excitedly. I suppose if it works, it does sound like a much better alternative than a shunt.

But, since our son isn't autistic, that was never mentioned, although we once met a woman with a dwarf daughter who was treated by Dr. S. Apparently they often have numerous neurosurgical issues, which makes sense, but I never realized.

Anyway, good luck to you. I hope you get some answers for your son. Dr. Abbott and Feldstein both have similar training and styles, as does Souweidane. Any one of them is excellent, in my opinion. (for what it's worth!)
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