I had a great meeting with my neurosurgeon and a neuroradiologist regarding my AVM a few weeks ago. I was told by the neuroradiologist that he COULD to Gamma Knife on my AVM with a 75% obliteration rate and a 5-10% chance of permanent deficit. My neurosurgeon who is also FANTASTIC advised me that he wouldn't want to do a full crani on me to remove it as both he and the neuroradiologist agreed that my AVM is at a very low rupture risk and I don't have any noticable deficits or issues from it. I am very very happy with my neurosurgeon here in my home town as he saved my life and is an awesome doctor. The neuroradiologist did tell us that if I was his kid however, he wouldn't do anything for my AVM based on the risk of deficits and the fact that i am asymptomatic.
There is one caviate, I would like to get a second opinion from another top hospital to make sure that whatever decision I make is the correct one. While I trust what my neuros have told me, I want to get a second look from another institution and find out what they suggest with regards to treatment and risks.
I am willing to travel anywhere within the USA to get a second opinion and have narrowed it down to Johns Hopkins, Mayo Clinic in Rochester, and Mass General.
In your experience which would you choose for a second opinion? My insurance company will pay all medical expenses related to a second opinion so in this case cost is not an issue.
I live in Philadelphia and Dr Robert Rosenwasser is one of the best he is located in Jefferson Hospital.He saved my life and also a friends life.He doesn't beat around the bush and tells it like it is..You can call 1-800-JEFF-NOW and they can help you out.Good luck with everything and please keep us posted.
Lindsay, My son had his AVM removed at Weill Cornell in New York. His doctor was Philip Stieg. He is the Professor and Chairman of the Department of Neurological Surgery at Weill Cornell Medical College and Neurosurgeon-in-Chief at NewYork-Presbyterian Hospital. My son had a brain bleed on June 5th. He had an embolization done on Monday, July 9th and brain surgery on Wednesday, July 11 to remove his AVM. He was walking the next morning and we were going home to VA on Saturday, July 14th! My son returned to work 3 weeks later! When I asked him if he was afraid to have the surgery, he said that Dr. Stieg's confidence reassured him and was a definite factor in his mindset going into surgery and his subsequent recovery. While everyone heals differently, I would highly recommend Dr. Stieg and his staff. They are a wonderful group of people and they saved my son's life.
I called Johns Hopkins yesterday and am going to send them all my medical info to see if they agree with what my docs here have said. I totally trust what my doctors here have told me and have a feeling that most other doctors are going to agree with them: dont treat if there isnt a need to right now.
I do kind offeel like i am cheating on myneurosurgoens though :P. my primary neuro is amazing and saved my life after i had a ruptured aneurysm unrelated to my AVM. I trust what he and the other neuro (who isnot a radiologistbut is a neurosurgoen, i misspoke) but my family feels that they would rest better getting a second set of eyes to look at my case.
Lindsy, If you have the ability to travel to get a second op, the team at MGH is great. Stanford is also on the top of the list, as well as Johns Hopkins & Mayo Clinic. I personally am a true believe in Proton Beam Radiation. Although I did have a brain bleed 6 months after the radiation, I think because of my age I would have had the bleed with or without the radiation. Check the difference between Gamma Knife and Proton Beam Radiation treatment. They do PBR at both MGH and in Stanford.
I don't have any experience with Johns Hopkins or Mass General but I can tell you from experience, the Mayo Clinic is amazing! My husband had a facial AVM so his was different than yours but it was something that other docs weren't willing to touch and the surgeon at Mayo took that leap and removed it and it is gone and he is well! As part of the process he had an embolization procedure at mayo with Neuroradiologist Dr. David Kallmes and we were pleased with him and felt he had good knowledge of AVM's of both the brain and extremities and it seemed to us the rest of the neuroradiology team there was very knowledgeable.
Duke Hospital, Neurosurgeon Dr. John Kirkpatrick or any Neuro docs at Duke are fantastic. They are rated among the Top 10 hospitals in the nation. I am a pt and love the treatment I have received there. Have them clearly define what "Deficit" means. Paralysis or just some weakening. Good luck!
Kimi, Are you refering to the Mayo Clinic in Rochester, MN? I am looking for someplace to get a second opinion. Rochester is only 3 hours from here. My AVM is in my chest area. I have had two angiograms and the Doctor can't get across an aneurysm to get into the AVM. My doctor would like to do another angiogram, but I can't just keep doing this over and over.