Devin, I am having surgery on 6/28/07 and the NS is Dr. Dan S Heffez. He is a Chiari expert from the research I have done. I do not know if he is someone that you would concern seeing but I think and pray about your struggle alot and thought maybe you might want o google him.
My previous PCP was a dream. She didn't understand ACM but was willing to learn. She would go to websites I gave her and also did a lot of medical research trying to help me. She left to work at VA hosptial so she isn't in private practice anymore. That broke my heart when she left. To date I have not found anyone, other than her locally that understands ACM or is even willing to learn.
After seeing 2 brilliant neurosurgeons in upstate NY ~ they referred me to The Chiari Institute> After seeing Dr. B (the man is so brilliant in the CHIARI world) ~ he set up a surgery plan for me: Tethered Cord with invasive traction to measure for the fusion later. Second ~ decompression followed by Fusion ~ I am still trying to get a local surgeon to approve my TC surgery and get this train moving!
Linda~ Sounds like you had a great PCP...You are so lucky. Mine, well he is good but, not knowledgable on our condition. It really shows in some of the tests that he orders.
5 comments:
Devin, I am having surgery on 6/28/07 and the NS is Dr. Dan S Heffez. He is a Chiari expert from the research I have done. I do not know if he is someone that you would concern seeing but I think and pray about your struggle alot and thought maybe you might want o google him.
Blessings
Sondra
sondra4unm@gmail.com
My previous PCP was a dream. She didn't understand ACM but was willing to learn. She would go to websites I gave her and also did a lot of medical research trying to help me. She left to work at VA hosptial so she isn't in private practice anymore. That broke my heart when she left. To date I have not found anyone, other than her locally that understands ACM or is even willing to learn.
After seeing 2 brilliant neurosurgeons in upstate NY ~ they referred me to The Chiari Institute> After seeing Dr. B (the man is so brilliant in the CHIARI world) ~ he set up a surgery plan for me: Tethered Cord with invasive traction to measure for the fusion later. Second ~ decompression followed by Fusion ~ I am still trying to get a local surgeon to approve my TC surgery and get this train moving!
Lace~I agree. I am waiting for my approval also! It is SOOOO frustrating :) Hang in there! Devin
Linda~ Sounds like you had a great PCP...You are so lucky. Mine, well he is good but, not knowledgable on our condition. It really shows in some of the tests that he orders.
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