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Looking for neurosurgeon/specialist in the Northeast for Chiari/syrinx

MRI in 1999 located tiny syrinx in thoracic area that runs from T3-T9.  Has been labeled as everything from dilated central canal to syrinx but its size has remained unchanged over the years.  Symptoms include headaches, muscle twitching in calves, muscle loss in quads, and some numbness in legs.  Handful of neuros have dismissed the syrinx as the issue because I can still lift weights, run, etc . .  .  Recently diagnosed with lumbar spinal stenosis but would like to see syrinx specialist to make final determination.  
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I was denied by insurance to see Dr Paulo Bolognese in Long Island in February. Syrinx/Spinal Stenosis from possibly C5-T6. 2014 MRI said T2/T3-midway T6. Every MRI different size and varying lengths. Definitively abnormal CSF flow present; differentiating it from Spinal Stenosis. I’ve never been allowed to see Syrinx expert. I was never allowed to see Dr Carl Heilman @ Tufts. However Dr Simcha Weller in 2018 said it was possible “ my syrinx grew, ruptured, got reabsorbed. It would be hard to prove, I myself am not a ‘Syrinx’ expert. Go to Children’s Hospital or New York to see ‘Syrinx’ expert!
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Hi and welcome to the Chiari forum.
I know how difficult it is to get not only the Drs to understand how this condition can affect us, but INS companies as well.....and unfortunately it's not just Chiari that they give people a hard time to  have covered to see specialists.

Since you had a Dr refer you to a syrinx expert, I do not understand how/why the INS would deny it. It also depends on the type INS you have....try to fight it....you can contest their decisions on such matters.
620923 tn?1452915648
COMMUNITY LEADER
Unfortunately I have not received any new names to add to our lists....as the names are given by the members here of Drs they have been to, treated by and liked....
It's been years so you will have to do research to see if he is still in practice but I heard good things about Dr Heilman in Boston....Dr Bologenese didn't do my surgery but was in the OR doing doplar imaging on me during the surgery.....my surgery was back in '09 and I have continued to see benefits from the surgery for years after.....very pleased with my outcome.
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620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum.

Have you had a MRI of the cervical spine to see if you have Chiari ? If you have a herniation  of the cerebral tonsils they can cause a blockage of CSF flow which can create a syrinx. You can also get a syrinx at a location of blunt force trauma, do you know which formed your syrinx?

What state in the Northeast are you in /close to?
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6 Comments
Hello,
Yes, I've had five or six MRIs of the full spine over the years to include cervical, thoracic, and lumbar.  Not a single neurosurgeon from some very respected hospitals has indicated that the syrinx is the source of any of my symptoms.  Most have stated that it's congenital, not causing any of my symptoms, and not to bother with it.  Regarding any trauma, no I can't pinpoint any.  I'm an hour from Boston.
I'd happily travel to any neurosurgeon on the East Coast who specializes in diagnosing/treating Syringomyelia/Chiari.
Any names of neurosurgeons on east coast would be much appreciated.  Thanks!
Hi...I will start with Drs in Mass and go from there....KEEP IN MIND--- this list is not a referral nor an endorsement of the names listed, it is a list compiled from the members here of Drs they have been to, treated by and liked. This list is meant to be a starting point for you to research them.


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

CONNECTICUT

Dr. Judith Gorelick
Connecticut Neurosurgery PC
330 Orchard St, #316
New Haven, CT
(203) 781-3400

Dr. Michael Diluna
Yale New Haven Hospital
Yale Pediatric Specialty Center/Pediatric Neurosurgery

NEW YORK

The Chiari Institute
Permanately Closed


· Dr. Rohit Verma
University Orthopaedic Associates at Great Neck
611 Northern Boulevard
Suite 200
Great Neck, NY 11021

Tel: (516) 723-2663
Fax: (516) 325-7190


· Dr. Sol Mora
Caremount Medical Group
600 Westage Business Ctr. Dr.
Fishkill, NY 12524

· Dr. Amit Shelat
200 Old Country Rd Suite 370
, Mineola, NY 11501
Phone:(516) 663-4525


Dr. Paolo Bolognese  MD
The Chiari Neurosurgical [email protected] NSP
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


Here is a start...let me know if you need more as it is possible some of these are no longer in practice....it's been a few years since this list was compiled.

Thanks very much.  Much appreciated!
SelmaS - I have heard a lot about Dr. Bolognese.  Any others, especially in the Connecticut or Boston, MA area, that you've read about recently - either that are on your list or new names?  Thank you in advance.
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