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I may have Chiari. Can anyone help point me in the right direction?

I had cervical and upper thoracic MRI's in early 2016 (Kaiser) for radicular symptoms. They found some disk degeneration and foremen narrowing and chalked it up to that. But they also thought they saw a syrinx, then decided it was just hydromyelia after doing additional MRI's (w/ & w/o contrast). I was told that we shouldn't treat it unless it gets to the point where it impacts my daily activities or causes coordination loss.

This month I reviewed the MRI's with my Chiropractor, who shared them with a neuro surgeon he knows. They diagnosed me with Chiari and believe that an upper cervical specialist (Chiro) may be able to treat it, and that people have had success with that in the past.

This is all new to me and quite concerning, I am an athlete and an Independent Personal Trainer. My livelihood, much like everyone else, depends on being very physically active and I see that this condition can be extremely life altering for those who have it bad.

Where can I learn more about the condition, but more importantly how can I navigate the medical world so that I can get a solid diagnosis from the right neurologist?
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620923 tn?1452915648
COMMUNITY LEADER

  You are welcome.....do check them both out to see which one you feel more comfortable and confident in.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi...I can give you all I have for CA.....not sure if any are in your immediate area tho.....

Please research the Drs and know most of us do have to travel...in and out of state to get the best care with the most informed and experienced Drs in Chiari and ALL related conditions.

CALIFORNIA

Dr. Langston Holly
Dr. Ulrich Batzdorf
UCLA, Westwood, CA
UCLA/Santa Monica Medical Center

Paul S. Jackson, M.D., Ph.D.
Palo Alto Center
795 El Camino Real
Level 3, Lee Building
Palo Alto, California 94301
(650) 853-2919

Dr. Jorge Lazareff, MD
Ronald Reagan UCLA Medical Center
200 Medical Plaza, Suites 140
Peter Morton Medical Build
Los Angeles, CA
(310)794-7700 Patient appoint.

Dr. Samuel F. Ciricillo
2800 L Street $5
Sacramento, CA
916-454-6850
Helpful - 0
1 Comments
There are 2 doctors within 2 hours of me, thank you very much!
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

First...DO NOT LET A CHIROPRACTOR TOUCH YOU !!!  Sorry for all caps but I had to be sure you take this very seriously....but when DX'd with Chiari  we are told to avoid manual manipulation of the spine.I have never heard of Chiro adjustments for Chiari.

I have researched Chiari since my DX back in '08...and I continue to...and I have never heard anything but to avoid Chiropractics  at all costs.

We can try to help inform you about Chiari and the related conditions ...we do have a list of specialists that you can use to research Drs.....the list is not a referral nor an endorsement for those listed .....let me know if you would like a list and let me know what areas you would like to look in....I am thinking CA....keep in mind you may have to travel.
Helpful - 0
1 Comments
Thank you selmaS. I am in Northern California, SF Bay Area. I would love to get a list from you. I understand that nothing I get from this forum is either a referral or medical advise. Thank you for replying.
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