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AVM Survivors Network

Doctor recommendations N.Y., N.Y


#1

Hi all,

Can anyone recommend a neurosurgeon? Everyone I have seen so far tells me there’s nothing I could do and to just leave it. I’m feeling helpless and scared of a bleed. After reading through countless discussion I feel hopeful that something can be done. I have an AVM on my brainstem.


Neurologist in NYC
Infoneed
Radiation after Surgery
#2

While I live in New York, I’m willing to get recommendations about doctor’s from other states or countries.


#3

Sal,

I’ve been searching brainstem AVMs for you. The one entry I found was for Dr Barrow at Emory University, Atlanta, I think. I’ll do a bit more searching and find the link for you.

In general, brainstem is very deep, very difficult to get to and only reasonable treatment probably gamma knife or similar, so you may do well to find a first class interventional radiologist.

Best wishes,

Richard


#4

Thank you so much for the help Richard. I’m going to look into that doctor right now. Hopefully I can find some answers.


#5

Here’s the conversation I found. Very old, mind. Not everyone will still be online these days (and I worry that some doctors have reached retirement in the years this site has been going)…


#6

I have seen a number of really good posts in respect to UCLA and Mayo in Minnesota. Trying to recall but believe there was some really positive comments in respect to a hospital in NY, can’t recall which one however. I’m from Canada and was doing a little research in case things didn’t progress here. I was going to potentially head to Mayo, about a day drive from where I am. In my case location mattered for sure.


#7

I’m still alive and well. Mine was a CM not AVM. I feel sure that that would make a difference. Procedure involved a robotic probe that was guided by high definition MRI mapping. In order to proceed I had to have had a bleed that touched the wall of the brain stem. They used this “clot” as an entry point to carterize vessels and suction out matter. Some nerves were permanently severed. Hard to say if I it coincided with surgery or was caused during surgery as I was bleeding at the time.

He was very knowledgeable and would be, I think, a good consult.


#8

Thank you for the information. I’m definitely going to reach out to him and hopefully he can offer me some advice. Thank you and have a happy new year!


#9

I recommend Dr. Saadi Ghatan in Manhattan. His office phone is 212 636 3232.


#10

I whole heartedly recommend Dr. Ronald Benetiz in NJ. Fixed up this Humpty Dumpty back together again


#11

Thank you for all the recommendations, I’m definitely going to give them a try.


#12

Hello Sal,

I wish to add my medical recommendation to the list of people who contributed in this thread to you research for further medical opinions.

My AVM history is this:
I was diagnosed with torcular tentorial region arteriovenous fistula with a cerebellar cortical venous reflux. Had a first embolization done in April 2017 with coils to the venous pouch and a second embolization in May with onyx. Still remained was a tiny area of residual fistula between the torcula and the posterior part of this sausage shaped fistula.

I had gamma-knifed in Nov.1st 2017.
I was appointed to have a follow up session this coming May.

I am Spanish interpreter, profession that demands high levels of concentration to memorize and translate long sentences to conveying the proper understanding into English.

After every intervention I was always felt OK, and I never stop working in my field.
I never bled nor have had other consequences.

I asked the doctors about the possible risks of air traveling, but was allowed to do it.

I live in Ontario, Canada and the excellent team that attended me during the described episodes were leaded by Dr. Michael Cusimano. He works in several hospitals belonging the the University of Toronto Network, however he mainly resides at the Toronto Western Hospital and St. Michael Hospital, both in Toronto.

I hope this reference might help you in your research for more highly qualified opinions.

Best

Enrique


#13

Robert Solomon. https://www.healthgrades.com/physician/dr-robert-solomon-x9p8j Incredible doctor.


#14

Hi. I highly recommend Dr. Peter K Nelson at NYU. He diagnosed my spinal AVM and was involved with its successful removal. I also recommend Dr. Donato Pacione as a neurosurgeon (Also at NYU)


#15

Sal, we are new to site as of today. I will recommend Dr. Dade Lunsford at UPMC Pittsburgh, PA. First Gamma Knife in US there and he has more experience than anyone in this country. Our son had Gamma Knife there in 1989. We also were able to call various place and send films for opinions back then don’t know if they still do that know. Most major hospitals in US have these machines now. Good luck with your treatment and decisions.
infoneed Ron


#16

late to the show, I had my AVM and epilepsy surgeries at Weill Cornell in NYC. Athos Patsilides is a wonderful Neuro Radiologist and Theodore Schwartz was one of my surgeons. Stephen Karceski was my Neurologist, they were a really amazing team.