Newly diagnosed looking for NYC specialist

Discussions about the illness, treatments, doctors, etc.

Newly diagnosed looking for NYC specialist

Postby Dhar587 » Wed Jan 03, 2018 12:26 am

Hello everyone,

I was just recently diagnosed with a small cavernous malformation in my brain. I love my
neurologist, but it never hurts to get a second opinion. I’m wondering if any of you knows one who specializes in our condition in NYC?

Thank you again, I’m so glad I found this forum
Dhar587
 
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Re: Newly diagnosed looking for NYC specialist

Postby PattiG » Fri Jan 05, 2018 5:35 pm

Hi and welcome,

I'm glad you've found a neurologist you like and that you're considering a 2nd opinion.
As a CM patient of 30 yrs., it's been my experience expert neurosurgeons are more knowledgeable w/ CMs and can best give opinions.
While I have no personal experience w/ NS in NYC, in general, leading medical teaching universities are good sources to research.
Also, look through threads of the forums for related topics.

Beat wishes,
Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
Cavernous Malformations & Central Pain Syndrome: http://support.stroke.org/site/News2?ne ... 1&id=17759
A Day in the Life of CPS @ http://www.youtube.com/watch?v=8ed6hazqNYU&feature=plcp
PattiG
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Re: Newly diagnosed looking for NYC specialist

Postby Elizabeth » Sat Jan 06, 2018 4:11 am

Welcome,

I think their
e might be surgeon in NYC that some others have liked...I can't remember the name, but you can do a search and probably find him. Another option is to look over the link with "centers for excellence". You will find some of the best, most knowledgeable doctors here.

http://angioma.org/pages.aspx?content=482

Best wishes!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
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Re: Newly diagnosed looking for NYC specialist

Postby Elizabeth » Sat Jan 06, 2018 4:17 am

When I looked at the search real quickly for NYC there are several doctors that came up, but the one that sounds most familiar from the list is Dr. Solomon. Now, I never saw him, but I think others have and liked him. The centers for excellence are the surest bet, but they are fairly far from you...I think.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Re: Newly diagnosed looking for NYC specialist

Postby Deannamarie » Wed May 02, 2018 12:16 pm

Hi! I was diagnosed with a brain stem cavernoma in November of 2015 in Orange County ny, then was flown to westchester. My neuros are with westchester brain and spine. I highly recommend!
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Re: Newly diagnosed looking for NYC specialist

Postby Marcy » Thu May 17, 2018 2:41 pm

I am newly diagnosed in CT and just found this thread. So Westchester? Did you ever look into Yale? Thanks! Light & love
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