Avm size 6.5 x 3.4+/-

Hi. Can anyone relate any positive scenarios in obliterating an avm of this size? We want to be proactive but need to hear some positive stories. Thanks.

Hi Janice,

My AVM is relatively close to that size. I’ve had 5 embolizations and 2 Proton Beam treatments. I was diagnosed March 18th of 2009 after having a seizure at work- no rupture though. At present, my last MRI was in April saying that my AVM is stable- without progress from the proton treatment yet- but with something of my size, I was ready to hear there would be no change since it had been expressed that there probably wouldn’t be until about a year or two after. It’s still 2/3’s the size it was when they diagnosed me- but, being 24 and having an AVM this size all of my life, I refuse to stop living a normal life. I play soccer (obviously being cautious not to head the ball). I go to the gym- I know depending on the doctor they will give you different precautions. I started in Rhode Island hospital with a second opinion up at MassGeneral. They’ve been rather helpful up there and as unfortunate as the situation is, I’m lucky to live in MA to have a great group of doctors so close by. It’s definitely a long process, with lots of ups and downs. I can’t begin to imagine how my mom feels throughout this process as even though I’m an adult myself, she’s been through ever step of the way by my side. Stay positive!

Thank you for the reply Sarah Jane. My daughter Kelly is 33 and was diagnosed in high school. She had been asymptomatic for all these years doing fine, never even had a seizure Went to college, traveled all over. She had a major bleed during her lunch hour at work in NY. She spent 7 days in ICU and another 2 wks. in rehab. She is mentally devastated. Her speech is still off and the right side is still really weak, she also can’t read and write yet, but they believe this will all clear up. She’s in therapy right now. We had a consult w. a Neuro yesterday and the 50/50 odds for radiation were too scary for all of us. Her AVM is located in the left temporal and it’s approx 6.5x3.4 She is also left handed and it’s in her speech and visual areas. Now, she is at high risk for another bleed and we would love to get this thing out but it doesn’t look promising. Do me a favor and keep me posted on your progress. i am glad you are on your way to obliterating the AVM.

Sarah Jane said:

Hi Janice,


My AVM is relatively close to that size. I’ve had 5 embolizations and 2 Proton Beam treatments. I was diagnosed March 18th of 2009 after having a seizure at work- no rupture though. At present, my last MRI was in April saying that my AVM is stable- without progress from the proton treatment yet- but with something of my size, I was ready to hear there would be no change since it had been expressed that there probably wouldn’t be until about a year or two after. It’s still 2/3’s the size it was when they diagnosed me- but, being 24 and having an AVM this size all of my life, I refuse to stop living a normal life. I play soccer (obviously being cautious not to head the ball). I go to the gym- I know depending on the doctor they will give you different precautions. I started in Rhode Island hospital with a second opinion up at MassGeneral. They’ve been rather helpful up there and as unfortunate as the situation is, I’m lucky to live in MA to have a great group of doctors so close by. It’s definitely a long process, with lots of ups and downs. I can’t begin to imagine how my mom feels throughout this process as even though I’m an adult myself, she’s been through ever step of the way by my side. Stay positive!