Chiari Online Support Group

Chiari NS in upstate NY?

Hello all. My daughter has been diagnosed with type 1 chiari with 2 syrinx, one in the neck area and another about mid back. I was wondering if anyone has any recommendations for a NS in the Syracuse area, and any info on if surgery is required due to the syrinx, and what type (patch) etc is usually done. Thanks!

I am not sure if you are willing to drive at all, but I saw a NS at Albany Medical named Dr. Matthew Adamo, and he was a good Dr. I liked him alot when I initially had to have a consult with the NS concerning my CM 1. I hope this helps! As far as the patch I cannot say, because I have not had surgery yet. Concerning surgery, most NS will recommend having the surgery done in order to prevent future problems arising from the syrinx. May I ask if your daughter is having any symptoms, and what those symptoms may be? I have Syringomyelia also, with a syrinx, and currently my symptoms are making things in my life difficult. I hope you find a good NS, and good luck!

no hypermobility, but she does have scoliosis and some arthritis in her spine. symptoms are headaches, tingling in hands and feet, some forgetfulness.

James; My nephew lives in Kingston NY and was also referred to Albany Medical Center. I don't think that it was Dr. Adamo that performed his surgery but they are extremely knowledgeable in CM there. if you want to drive there I would be happy to get the name of his surgeon. He had a very large tonsil, went without symptoms that we were aware of (21 and didn't complain) and all of a sudden he called his mother saying that his right side of his body was numb. They diagnosed him in Kingston with MS and then went to Albany for a 2nd opinion. The surgeon operated on him within the week as he was starting to loose the ability to use his hand. He did well with the surgery, his strength is back and his usage of his hand. He just gets tired (hand) when it is used too much. Let me know if you want more info and I will get his name.

Good luck, Lily