I had my decompression done in April 2010 in Philadelphia,Pa. I had my follow up in May 2010. That was the last time i have heard from him. They say there is no reason to see me. I have issues that i feel he should want to keep a check on. However here I am 2 years later and haven't seen him since. He did tell me at my follow-up May 2010 that he would see me in 40 years but i really thought he was kidding. Has anyone else's dr. not thought follow-ups were necessary or should something be done?
Most Nuerosurgeons only want to see people that they are going to operate on. You need to find a neurologist that knows something about Chiari to monitor you,which isn't easy. You have to do alot of research. I had a very prominant nuerologist recently tell me that I "Didn't have Chiari anymore because I had the decompression surgery" and that my symptoms seemed like Chiari symptoms but that "It isn't possible because I had the surgery" A good nuerologist will keep checking to make sure that you are still ok where you had the surgery. I still had severe symptoms after my surgery and it's taken me 7 years to find out that I had scar tissue build up and completely block my CCF at C2. It most likely happened within 1 1/2 after my surgery in 2001. I finally found a dr that knows about Chiari and finally ordered a Cine MRI. A good nuerologist will also treat your symptoms with medication if you need it. The dificult part is that the surgery is not the end for most people with Chiari.
My NS also told me I didn't have to come back unless I had additional issues. Unfortunetly since then he had to remove C5 & I had two mgr & the right minor Occipitial Nerve Blocks. I don't think they know what to do with us after the Decompression & Crainectomy & Laminectomies. I have called with questions many times and they always want a new MRI & tell me things look good. While local NL and even Radiologists don't even know what my MRI is supposed to look like & have asked me.....Like I know??? I can tell them what has been done but shouldn't they know from my medical history ???? I give it to them everytime. It's very dejecting......