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AVM Survivors Network

AVM doctor recommendation in New York City and any advice or guidance please


#1

Hello, I came across this site while researching for a good doctor for my mom. My mom was diagnosed with AVM on the right side of her frontal lobe. She was diagnosed in 2014 and we’ve been back and forth with her doctors, which have left us very confused and overwhelmed.

It began in February 2013, in flight, she had a partial seizure. That was the first and last seizure of that year. It lasted about 15 seconds, she snapped back to normal, did not remember those 15 seconds and denied anything had happened. At that time I did not know it was even a seizure, as it was not a typical seizure, more like mixed up words, sucking sounds, and shortness of breath. In May 2014, my mom woke up with loss of hearing in her left ear and a fever. The seizures started later that year and became a norm. November of that year, we had an MRI done and found out that she has an AVM on the right side of her frontal lobe. In December 2014 her doctor prescribed her Kepra for her seizures, which she still takes till date. In 2015 we began visiting neurologists. After sitting with a few we decided to go forward with one. We had a few sit downs until my mom was comfortable to do the endovascular biopsy. She had that procedure done in November of 2016. The doctors told us that she may have to do the procedure again so they can get a closer look. They told us that Endovascular embolization might not be an option for us because it can effect her motor skills. They said we might not have an option at all. This disheartened my mom and she has not gone back since. Her seizures have been kept at bay because of kepra and otherwise she looks fine, but we know it is something we want to take care of sooner than later.

At this point, we are extremely overwhelmed with the information provided by her doctors and would rather she see another doctor, preferably with patience, as we always have tons of questions. We’re also scared to take a step that might put my mom’s life in danger. If anyone can please advise what steps we should take, any guidance or a good doctor recommendation in NYC, would be highly appreciated. Thank you very much!


#2

https://www.nspc.com/drs/all-physicians/

Jon Pile-Spellman
Jonathan Brisman


#3

I can recommend Dr. Saadi Ghatan in Manhattan. He’s operated on me twice. He takes as much time as needed. In addition to being a skilled neurosurgeon, he’s a genuinely nice guy. He works with Dr. Berenstein, who’s a well-known interventional radiologist.
You can find his office information by searching on the web.


#4

Dr. Nanda just moved to New Jersey. He removed my son’s AVM in March. He is an amazing neurosurgeon. He is chairing two neurosurgery depts there at two separate hospitals. Look him up. He’s at Rutgers and one other.


#5

Dr Robert Solomon at Columbia University Hospital is a world renowned neurosurgeon and has operated on more aneurysms and AVMs than any other surgeon in the tri-state area. In April Dr Solomon operated (together with Dr Anderson, pediatric neurosurgeon) on my son’s previously ruptured avm, with incredible results. A couple of weeks after surgery my son was feeling as if nothing had ever happened! We are extremely fortunate to have found these two amazing doctors! Dr Solomon also operates at the Valley Hospital in NJ. His office staff is extremely caring, thorough and very helpful. Good luck to your mom!


#6

I would have her ask to use Surgical Theater technology at New York Presbyterian Hospital. The surgeons will be able to fly through a virtual reality model of her brain for clearer depiction than just the 2 dimensional MRI. They will also allow her, and your family, to fly through the model as well. As someone who has used this first hand, it’s a game changer for understanding and developing the most effective and safe treatment plan.