Chiari Online Support Group

Any Suggestions?

Hello! I’m having trouble post surgery and I can’t seem to find a doctor that can help. I have already had surgery and my MRI came back good but my symptoms are still there and actually seem to be getting worse. However the doctors I have seen are saying it isn’t related to the Chiari. Anybody have any advice or suggestions? I am very frustrated with this process! I live in Boston.

How long has it been since your surgery? Have you spoken about this with the NS who preformed your surgery?

Try not to overdo things. Your body needs all the help from you it can get in the recovery process.

I recently had surgery in Boston. Where did you have yours done? How long ago did you have it done?
The whole thing is frustrating not to be negative but it is. I had more symptoms after the surgery than before. They have subsided which is promising.
Hang in there this too shall pass.

Hey Fugu!

It has now been a little shy of a year now. I talked to my surgeon about it a few months afterwards when I had my follow up. Now, I am encountering Neurologists that treat me like I am a drug addict. Neurosurgeon that said it has nothing to do with my chiari and a psychologist that says its ptsd and fibro. Anywho, just have not had the best of luck. And I have been fainting more often now..

Hey Matcar!

I had surgery in Jacksonville Fl. a little less than a year ago. The whole thing is very overwhelming!

Matcar said:

I recently had surgery in Boston. Where did you have yours done? How long ago did you have it done?
The whole thing is frustrating not to be negative but it is. I had more symptoms after the surgery than before. They have subsided which is promising.
Hang in there this too shall pass.

You do not say what your symptoms are other than the fainting though perhaps I missed it. Doctors tend to do well with people who have symptoms that are within their skill set but poorly when they do not. A lot of mental health pointing can happen. Perhaps you would be better off with someone with a different knowledge base - be it a different physician or health care professional. Hard to say. Good luck in finding the answers that you are looking for.