Chiari Online Support Group

Recommendations

I’m looking for recommendations for a neurologist, not a surgeon, to help me with getting a handle on my pain, concerns that I have POTS and EDS, plus help with my sleep situation (diagnosed with sleep apnea, and I use a CPAP). I’m sleeping 14 hours a day since surgery 2 years ago. I was diagnosed with tachycardia and am currently wearing a heart monitor for 30 days. I’m also now having problems with digestion. I was diagnosed with a faulty gallbladder but the surgeon was hesitant to remove it.
Anyway, I need a neurologist who can help me with my overall health and understand how all these things go together. I will go anywhere, just as long as the doctor has knowledge of chiari and all the comorbidities… especially Vagus nerve damage and how to treat it.

Hello @TwilaTee, I am following your post in order to learn as much as possible to help my 11 yo daughter. She was diagnosed with Chiari in August 2019 and I also believe she has EDS although we are waiting for genetic testing to confirm. Where do you live? There are so many people here from all over that can offer their experience and help you find a neurologist. May I suggest that you read through as many posts as possible. You may find some of the answers you are seeking here. This site has been a blessing to me and my daughter! Please update when you are able. God bless you :purple_heart:
Kindest Regards, Angel