Should I Change NS's?

[Schroeder123]

Okay, so I was diagnosed with CM1 in April 2013 and had my decompression surgery in Sept. 2013.  I really like my NS, Dr. Christopher Bogaev in San Antonio.  My problem is that he is extremely happy that my Chiari is "fixed" even though many of my symptoms remain.  He says he is very sorry that I still don't feel good and maybe I have fibromyalgia because the Chiari shouldn't be causing anymore problems.  I am still having the following symptoms:  dizziness, headaches on one side of the head or the other, severe neck/back pain all the way down my spine, vertigo when going down stairs and on escalators, extreme fatigue.  So, here's my question:  should I change dr's and find one that will explore the other issues that many Chiarians have?  I don't want to hurt Dr. Bogaev's feelings.....he's a REALLY nice guy with an amazing bedside manner.  He really listens to my problems, but I feel like he doesn't think there's anything else wrong with me.  I have looked up fibromyalgia.....it just doesn't fit in my opinion......suggestions??

[kristy12]

You don't need a ns to see whether there is something to be done there. I would ask radiologist for an opinion first. But anyway if he feels everything is fine, whether he lies or truly feels it that way, you won't force him to fix anything.

[selmaS]

  Hi and welcome to the Chiari forum.

The nicest of Drs is not the best Dr...as he feels you are fixed and has not considered other possible issues...so yes, get another Dr...and get copies of your OR report as well as ALL MRI's and their reports so your next Dr will know what was done and what the issue might be.

Not ALL NS's should do Chiari surgery as they do not focus all their attention to it and know what else could be going on....example...to suggest fibro instead of ICP, POTS, CCI, ehlers-danlos, tethered cord.....

It could even be that the space made during surgery was not large enuff or was too big...or scar tissue has formed....and lastly if you have a dura patch that it failed.

Get all your info together from b4 and during surgery and find a true Chiari specialist to help guide you at this point forward.

Know you are not alone.