Help

I'm especially interested in hearing from anyone 55 or older who has had embolizations and/or crainiotomy.

I'm told by docs that risk rate for a bleed goes down at 55 and risk of procedures is 3X greater than risk of leaving it alone and taking my chances.

I was told by a survivvor that her docs highly suggested she have it done at 55 or she would wish she HAD when she was 60.

So....what to do. After my hemorrhage in 1975 I had no symptoms until 1998. (Even then, I wasn't told I had an AVM, just scars from the hemorrhage). That was treated with meds that I was able to get off of. Then about 6-7 years ago I started having episodes of tingling and light-headedness that were few and far between, UNTIL, October 2010 when I had a cluster (Now calling episodes, seizures) which led to my diagnosis. I feel off balance all the time but that is really bad after a seizure.

Of course, no one really wants brain surgery, right? But if my symptoms continue to escalate as they have in the last couple of years there will be no real quality to my life and I'd rather have brain surgery than a no quality life.

So, seniors! If you've had these procedures at the ripe old age of 55 or older, why did you do it knowing the risks?

Thanks in advance for your comments.

Karen, I discovered that I had an AVM at age 56. It was found by accident. I didn’t have the symptoms

most people have, such as headaches, etc. Once my AVM was discovered, I then had an angiogram at Mass General. After finding out the size, location, etc of my AVM, I actually asked the doctors if I could just do nothing. To be honest, I wished they would say, "Just leave it alone". But that's not what they said. The doctors told me that at my age (56), the risk rate was higher. As you know, every AVM situation is different, but perhaps you should get a 2nd, perhaps even a 3rd opinion. Best wishes...Keep in touch.

Hi Karen, I apparently had my first bleed in my teens and a second bleed in my 40’s. Both were undiagnosed- one was assumed to be meningitis and the other, a severe migraine that lasted for over a week. Anyway, I had a third bleed on Jan. 22 and during hospitalization was diagnosed with an AVM (after many tests). I was told that the chance of a re-bleed in the first year was much higher than subsequent years (~3% per month vs. 3% per year). I am awaiting more tests before my surgery is scheduled for removal of the AVM. NO ONE has suggested that I not have surgery. (I would probably take that advice and run- I am totally dreading surgery). I have had 3 neurosurgical consults (UCLA,UCSF, Texas Med Center) and no one even intimated that the bleed risk would go down with age. I’m 57. I guess everyone’s AVM and situation is different. Good luck with your decision.

Hi Karen,

I'm a little late in responding, but I am 59 and had 2 embolizations, one in Sept and one in Oct. I have to say I would NOT recommend it for someone in my age bracket, as you are right, the risk for a bleed drops at 55.

Since the embolizations, I often slur my words, am off-balance constantly, and have little self-confidence now. My ears are still ringing (and it's 8 months have the last embo) My dr. says neurons will re-generate, but I can find nothing in print that says that. They got about 70% of the AVM, and want me to have radiation to "try" and get the rest of it. Would I do this again knowing what I do now. No, I would not.