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15999399 tn?1444576407

The Chiari Institute/ Surgeons

My 22 year old daughter, who lives at home and is partially disabled due to EDS/POTS, may be facing surgery for Chiari Malformation. Based on the standard neck MRI and neck instability, the neurologist suspects Chiari Zero while admitting that  C. Zero is "up for debate" within the Chiari research community. My daughter is still waiting for the standing MRI appointment but her neurologist and cardiologist are already telling her to expect surgery. She'll definitely need pins for her neck instability but it seems early to determine what else is needed. Her newest symptoms are debilitating so she was excited about the prospect of surgery giving her relief. Her cardiologist said he'd want none other than Dr. Rotake at The Chiari Institute to do the surgery. I know there was a scandal, years ago, but it seems as reputable a place as any (no more, no less). I've also read wonderful things about Dr. Oro in Colorado. Has anyone had personal experience with either? We live in northern Virginia but would be willing to travel. Thanks for any insight or experiences shared!
2 Responses
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

I went to the Chiari Institute....but that was not my Dr....and as for the "scandal"  it had to do with the hospital staff and a Dr no longer at  TCI.

Dr Oro is not taking new patients as he is retiring.....

There is a Dr Heiss in the Baltimore , DC are....Dr Henderson in MD as well  and a a Dr Rosner in NC......

Does she have a syrinx too?

Typically for cerviocranial instability they do a fusion.....each Dr will treat  it slightly differently BUT make sure they are mindful of the EDS as those with it are prone to reject foreign matter, so ANYthing foreign can cause infection, rejection, and failure.....so a dura patch should be made from the patients own tissue harvested from the body.

Most of us do have to travel to get to a true Chiari specialist...make sure to check into the Housing  many provide close to the hospital.

Keep us posted on what is decided upon.
Avatar universal
Hello, if you are in the Dc/VA/MD area and are willing to travel, Judy Huang at Johns Hopkins, Bayview campus, just performed my surgery for a Chiari I.  She was wonderful; very thorough and explained everything in great detail.
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