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What's the next step?

For a year I've been having episodes of on going pressure in my head. The pressure comes when I laugh, cough anything I pretty much do. It has gotten so bad I would attempt to relieve the pressure by putting my hands on my head on both sides at the same time and applying pressure... This doesn't last long. Anyway I've had MRIs done and the year before this started happening my MRI shows the condition but no symptoms. I was referred to a neurologist for a different health issue, but when I mentioned my symptoms be looked at me crazy because he was shocked no one told me every I have. Anyway, I've had more MRIs, of head, and neck. I have arthritis in my neck, whatever that means and it of course does Chiara. My neuro surgeon told me he doesn't recommend the surgery because it will not help me. On top of all this my memory is getting worse. I forget things in mid sentence, and apparently I don't recall things from the previous months, the pressure now arrives more without laughing, coughing and other things. My sensitivity to light really *****, and I have constant migraines.  My doctors are already puzzled and my follow up with my neurologist is in a month. (I already write things down regarding, appointments, events for work, school and other stuff)  What is the next step?
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

I am not sure what list is outdated....but our list here has been compiled by the members of Drs they have been to, treated by and liked, the list is not a referral nor an endorsement for those listed....each person must do their own research to find out if the Dr works with your INS, etc...and if you feel comfortable and confident with them that they are in fact a true Chiari specialist and will not only treat Chiari but be mindful of ALL related conditions as well....we need a Dr that knows Chiari and ALL related conditions and has experience treating them as well....not all Drs have the experience....and that is where it counts....so visit with a few and decide who is best for you

Out side of the Boston are what areas do you want listings for?

MASSACHUSETTS

Dr William Butler
Mass General Hospital
Boston, MA

Jean-Valery Coumans, MD
Mass General Hospital
15 Parkman St.
Boston, MA 02114
Tel: 1-617-726-3511
Fax: 1-617-643-4115

Dr. Carl Heilman NS
Tufts Medical Center
Boston, MA

Since you mentioned NYC I included NY as well-

NEW YORK

Chiari Institute
Great Neck, New York
(516) 570-4400
(516) 394-8350
· Dr. Harold Rekate
· Dr. Salvitore Insinga
· Dr. Rohit Verma
· Dr. Misao Nishikawa
· Dr. Sol Mora
· Dr. Amit Shelat
· Dr. L. Thierry Remy

The Chiari Neurosurgical Center@ NSPC
Dr. Paolo Bolognese  MD
Suite 108
1991 Marcus Ave
Lake Success, NY 11042
Winthrop University Hospital
259 First Street
Mineola,NY 11501
www.chiarinsc.com


Dr. Gregory W. Canute
Dept. of Neurosurgery
725 Irving Ave.
Syracuse, New York
(315) 464-55133

Drs James Greenspan and Fred Scialabba
North Country Neurosurgical
454 Glen St
Glens Falls NY
(518) -793-8160

Dr Chanland Roonprapunt (formerly of The Chiari Institute)
Spine Institute of New York
(212)523-6720

Dr. Arthur Rosiello
New York Brain and Spine
24 Research Way
E. Setauket, NY 11733
631-444-9310

Helpful - 0
Avatar universal
Where can i find a specialist????? The list currently floating around on the internet is outdated...or so i was told on another forum by a women who is quite knowledgeable about CM. She said there aren't any in my area. Boston. But dr greenfield in nyc comes highly recommended....insurance won't cover me though.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

It is not easy dealing with this condition and the medical profession as Chiari is not well known and those that may know it may not know enuff or have experience with it to really treat or tell us how to approach it...so, educate yourself on Chiari and ALL related conditions and research Drs to find a true Chiari specialist....having the right Dr is key....

I was told I did not have it, one said I did, ,and no idea what else to tell me....so...you have to be your own advocate...I did have surgery and no regrets as I am better having had it.

And know, you are not alone.
Helpful - 0
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