Introducing Madfreearrow from New York!

@Madfreearrow Hello there and welcome to AVM Survivors Network! So, you’re from New York? Wow! That’s really really my dream country! It was my dream ever since I was a kid to celebrate Christmas there! I always dreamt of seeing the Rockefeller Center Christmas tree (Probably because of the movie “Home Alone 2: Lost in New York”). Speaking of which, how are you doing right now? I’m so happy that you found our community!

If you want to learn more about your diagnosis, you just came to the right place! The “New User Help” below the big banner is a great guide when familiarizing the site. If you have any questions, please feel free to message me!

Thanks for the warm welcome! New York is just like the movies in some parts of Manhattan. :slight_smile: You should come visit once in your life.

I’m doing well now. I was diagnosed in 2016 and had 2 embolizations and gamma knife in 2016-2017. This is my three year follow up and I’m looking for people with similar experiences to mine. I went back (to a new doctor as mine as moved to a practice far away) and he told me that my MRI showed that the malformation itself looked the same and that I would need another angiogram and embolization, if not multiple embolizations. I initially agreed to work with this neurosurgeon but my gut told me to get more opinions. I ended up cancelling the angiogram and I’m going to take the trip to see my interventional radiologist in upstate, NY because he’s the one who performed my previous 2 surgeries.

I’m looking for people who waited three years or more after the gamma knife and had to do more intervention.

All the best!

Madison

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I’m surprised you go elsewhere, because some of the best neurosurgeons are in Manhattan. I live in Rochester and I go to NYU for my care.

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Do you see Dr. Berenstein? I see Dr Avi Setton who used to work with him at NYU and then practiced in Long Island NY. He since moved so I only travel to continue the job he started.

Welcome, we have a great group here with a ton of experience. I was straight gamma knife after my AVM discovered by a bleed. One sessions, a couple follow up MRIs and an angio about 27 months later that confirmed obliteration. Mine was fairly small however deep ad surgery was risky so took the gamma route. Hopefully you’re follow up yields some positive. Take Care, John