I had horrible headaches since I was 12. After having a CT scan when I was 15 the doctors told me they found nothing. After 6 more years of headaches I got an MRI in November, when I was diagnosed with an AVM in my cerebellum right next to my brain stem (they checked the CT scan and turns out, the Dr missed the AVM when I was 16!!!). Anyways, I had an angiogram in December and they saw only one feeder, I had an embolization in February and while they were sealing up the feeder they found another feeder, when they went to plug that side, the artery hiccuped and the glue sealed a different artery. It caused a serious infarction, and I couldn't walk (there was a <2% chance of this happening). After spending 2 weeks in the hospital re-learning how to walk, I went home on a walker (which I was on for 2 months, then graduated to a cane and now, after 7 months of PT, miraculously, I walk perfectly and no one would ever know I had anything wrong!) Unfortunately, the embolization only shrank the AVM, and didn't obliterate it. So now I am faced with a decision. My choices are gamma knife, or no treatment. I met with 5 doctors and consensus is: with the gamma knife, they have a 75-85% chance of obliteration. But they feel because its so close to my brain stem there is a 15-20% chance of spillover with the radiation; spillover that hits the brain stem in this region would cause permanent blindness or paralysis.
Alternatively, I could just leave it and not treat it further. However, with that option every year there is a cumulative 2-4% chance of a hemorrhage. And based on the location of my AVM, a hemorrhage would be fatal.
My AVM used to be 2.5 cm, but now its 1.5 cm.
Living knowing that I have an active AVM has been stressing me out and when I get the slightest headache at work, I immediately assume the worst is happening, I don't know that I can live my life with this on a daily basis. On the other hand, if I do have the radiation treatment and I fall in the 15-20% I dont know that I could have a great quality of life being blind and/or paralyzed. I'm 22 years old now, and this decision is too much for me to handle. Any and all advice would be quite helpful!!!
For a more details on my journey please visit my blog www.who-needs-a-brain-anyways.blogspot.com
Thank you!
I would leave it alone and take my chances. Medicine is an evolving field and what could take twenty years today, may actually take only a few more years. I, too, had an AVM on my cerebellum; it was more than four centimeters in size and symptomatic. I had a resection after five emolizations, and a bleed after my fifth embolization. After nearly four years, I still have Double Vision, hearing and Proprioception problems. I can’t drive a car or work and I would take the headaches that I used to get over what I have become now!
Hi Mel,
A tough decisions, and one only you can make.
On the downside, it's risky to do more. And it's also risky to do nothing. Down the road, technology will improve and the risks of treatment should be less.
One thing that is still in dispute (at least in my mind) is the "2-4% risk of bleed CUMULATIVE". I've heard it stated as cumulative, meaning 2% year one, 4% years two, etc. And I've also heard, no it is NOT cumulative, so that in any future year, the risk of bleed is 2 to 4%. That's in year one, year two, year forever.
If cumulative is true, there would NOT be any old AVM survivors, and there are!
Hope this helps and I wish you well.
Ron, KS
Wow, this is a very difficult decision for you to make being so young. I can only tell you my story: When I was diagnosed, I found the BEST neuro doctors I could find. I was lucky enough to live only 1 hour away from Mass General. After all the tests, I was told that I had an 89% chance that I would have a brain bleed. During a meeting with 6 neuro docs, I was told my only option was Proton Beam Radiation. I looked at the top doc and said, "What if I do nothing" and "What would you do if it was your life at risk" and he said, I would have the Proton Beam Radiation. So I did. Six months later, I had a massive brain bleed, but to be honest, I think it was going to happen regardley. Well, I'm alive, have some brain damage because of the bleed, but still living a good life. Two years after the radiation, I became AVM Free.
So I believe you should find the best and trust them. Please keep us informed of your journey! Stay Strong and Stay Positive!
Good note Lousia,
The other factor I neglected to mention in my post is "How close are you always to the best hospitals?"
We live in the midwest, and have relatives in western KS, where the nearest hospital is 2+ hours away. Any DR there might have read about AVMs, but most likely never treated one, or done brain surgery. So IF we made it to that area hospital, then it would be 2+ hours waiting for an air ambulance and travel time to a major hospital.
When your life is in the balance, how much time will you risk? We had an aunt who had a heart attack. Her husband drove her to the hospital (45 minutes). She needed more care than the local hospital could provide, so they called for air ambulance. Only the visibility was too low for them to fly. End result: She died there.
Picking your DR and date of treatment does offer you the luxury of knowing a team has reviewed your info, rather than the luck of the draw of who is on duty in the ER.
Best wishes,
Ron, KS
Have they looked at doing the radiation in five days instead of one? This was discussed by my doctor if they can embolization it. Basically you only have a 60% chance of gk working curing with no problems. Technology is always changing. I also heard it is not cumulative.
At least you have options. Not sure I do. Good luck and take your time making the decision.