I'm sorry you had to go through that. I feel annoyed at this doctor for you. I know the feeling these types of doctors give us as patients and its not a good one. We've already been through so much we dont need to see someone rolling their eyes.
Are you going to see a new neurologist? The tremors are probably coming from the instability. I get tremors too, they get worse the more i do.
I think if you could find a NS who is very knowledgeable regarding EDS that would be the way to go. The problem is finding one.
I hope your appointment on Monday goes ok, I hope they at least listen to you. So far I haven't met a neurologist I like, if they cant figure things out they just assume you are emotion and unstable (which we are :) ) and try to medicate.
Hi Kerri, I hope your appointment went well, if it was today. I was wondering if a chiari specialist who also is familiar with EDS would know which surgery should be done, or rather, which one should be done first. I would think having a craniocervical fusion first might add even more stress to the already herniated disks, but that's just a guess. How far down are the herniated disks, would an option be having both done at the same time. Say, if it was c3 and c4 would a chiari specialist know if a craniocervical fusion through c4 is the way to go??
I hope your appointment went well and you got some answers.
Hi KerriC I have not had this surgery so can't give first hand knowledge on any of it....I was told I would need a fusion due to CCI too...but have not had the need to do it yet.....
Ask if the fusion they are considering doing will affect your ROM and if so how much.....
How close to the CCI issue are the 3 herniations? What disks are involved?
Keep in mind if you have CCI you also have EDS and recovery may be slow due to that.....