I have a question. I know allot of people here have had surgery on their avm. Most of you discovered you AVM because of a bleed. According to my dr’s I have never had a bleed. When they discovered my AVM it was to deep and to wide spread to operate on. The vains looked in good shape so it was decided to be monitored. More negative effects would be cause by surgery. Any one else have an avm like this? I get a MRI every 2 years to check it. Every time they see no change…
Hi Brian,
My AVM was bigger than an egg but smaller than a lime. Unforunately, mine ruptured. I had 4 anuerisms at one time and almost died. I am very glad to hear that you have not had any problems. When I ruptured, they said I was too far gone to take it out so I had steriotactic radiosurgery. It worked to a large degree, the AVM shrunk 80-85% which they told me was miraculous. I still have part there and have not had another rupture and I am 10 years post surgery and very functional. I am not without problems and think right now, the way I am feeling, not doing so good lately, that it is or has grown back and may be getting ready to rupture again. Some of the same signs I had then are appearing again now. You look fairly young in your picture. I was 28 when I ruptured. I will be praying for you and hope that you do not have any problems. Stay aware and report any new signs to your Dr’s, any change you notice may be the AVM and if they need to do something, pre-rupture would be better.
My AVM is too large for embolization or gamma knife. Since I haven’t had a bleed, the doctors don’t want to operate and take a chance of causing damage to the good brain tissue if not absolutely necesssary. The team in Boston suggested proton beam radiation, which is more precise than any other type of radiation. It’s only offered in about six locations in the world. I had the PBR done in January 2006. I was told it would take 3-4 years to work, IF it works. About eight months later, everything started spiraling downward. The headaches became much more intense and a whole lot more frequently. I started having ER trips because of the intense pain, but CTs, MRIs, & MRAs show no change in the size of the AVM. I’ve become much weaker, more tired, and more off-balance as well. I almost feel like the proton beam gave the AVM a kick in the butt and said, “Okay, guys, let’s show her what you’re made of!”
What are the signs you see before a rupture. My DR days I might have a fuzzy vison in my eye other eye, or a dark spot. My I might start havening seizures again, and will have very bad head ake in the area of the avm. What other things should I look for. He said my neak would be stiff as the blood pooled in the bottom of my brain.
Connie, That is exactly what my dr said… It is to large to operate, and it is stabled so my life is very functional now. I am very normal except from taking epilepsy meds and having my learning disabilities. So they felt, they I mean in 1995 they ddi a case study on me at a neurologist convention. The recommended monitoring and take action if it shows signs of issues. My dr said most people who have AVM’s never know it because it never bleeds. So I could live my whole life with out an issue.
I had lunch with my mom today. She told me they said that there was no reason to operate on it now. Remember I was a kid so I don’t remember what they said at the time that well. It will possibly cause more damage then fix. Now if I could not function and my seizure kept me from functioning as a normal then thats another story. They decided to keep monitoring it for change, and it has not changed. Until it does it will stay just monitored. However now that i have joined here I now know of my options when that does happen. So I thank all of you for that… Now I am going to definitely discus these options next time I see my doctor. Found out there is a gamma knife at the hospital my dr is at. http://www.elekta.com/patient_us_leksell_gamma_knife_centers.php#GA
LOL, she also told me to stop obsessing about this… It will make me more worried.
My husband had no idea that he had an AVM until it bled. He was having pretty bad mood swings for about a month, then one day he felt tired in the middle of the day and went to bed. I got home about 2hrs later and found him in bed. He was responsive but he made no sense when he talked. His speech was slured and his coordination was off. He never complained of a headache. But he’s not the compaining type, so he might not remember if he had headaches.
Hey brian,
Exactly how big is your avm and what is its location?The thing is it may well not bleed in the short term but the longer you leave it the more risk of it developing anuyisims which doubles the risk of it bleeding.
I was 31 when diagnosed with a 7x 3½-4cm avm(larger end of the spetzler grading),my neurologist didnt mess about,he told me if i didnt get the operation now,id be dead within 10years.
Its better to have the operation when younger as the recovery will be alot quicker as your alot healthier.Yes you say that it might not bleed and that may well be the case,but do you want to go every day thinking is it going to happen today,or can or cant i do this or that.You become very limited with what you can do when you have a beast like this living in your head.I know in Aus your not allowed to drive a car once diagnosed with something like this,certain sports are well out of the question aswell etc etc
Its a catch 22 situation i guess,i was like you and spent 12months thinking about whether i should have the operation or just live my life to the fullest and hope for the best.In the end i thought i dont want to be living a time bomb life or be dead by 40,yeh there are risks involved with every removal,i was told i would definately lose a ¼ if not ½ my eyesight and be weak on my left side from my op,here i am today with no neurological defeceits at all.I took the gamble and it payed off,now i can start living the life i had to put on hold when first diagosed.
Just have a good think about it mate,in the end if you were to have the op and there was to be some weakness or slight loss of eyesight etc as a result,that can be worked around.If you ask me its a small price to pay to live a fairly normal life again 
Take care,Theo
Theo, My senerio isent as grave as yours… I don’t think mine is that bad. Every situation is unique. In my case I had an intier summit of nero surgeons looking at my angio and mri results and they all came to the conclusion. Next time I talk with my dr I am going to discuses this, and what he thinks. 2 months ago I discussed this and he says he has not seen any change or weakness in the avm, and that we will still monitor it. It was found in 1995 so that has been 13 years It has not changed since then. I have not had a grandmal in 6+ years and my life is normal except for taking meds. So for now I will continue to have it just monitor. After joining I do know my options now. I might be incorrect on the size as mine. I thought it was multiple spots… Not just one large one. I need to discus this with my dr again. Its hard to remember exactly what they said 13 years ago. Now if my seizures start again I definitely am going to talk with him.
Stacey,
Same thing with me. Right now I agree with my dr. This has been the opinion of many nerologist I have seen. So seince I have had quite a bit of dr’s agree to monitior I am trusting them. If they decided that a need to operate I will trust them on that also.
Hi all when i saw the doc and his understudy they said i had three option’s 1 to go in through the leg and glue it 2 go can remember the other one 3 was to have an operation but a the operation was very risky i would be better of just monitoring it as i have had it so long still waiting for updates from them i know in my self i’m getting worse iwill be going for another scan soon to see if it’s changed so i have not got a clue what to do;-)
Well my AVM is located in the center of my brain. And I had two bleeds in my lifetime. And they can not operate on it manually. They had to shoot radiation at it three times. And I am still on this earth, thank goodness. I am still successful working at an engineer firm in New Orleans, LA the United States of America. I am a designer/draftsman.
Brian how big is your AVM? I was also told there was no treatment but due to decline in health they did embolizations and radiation. It has been almost two years since my last treatment. My AVM is 7cm x 7cm. They found mine 37 years ago and it was only being monitored up until four or so years ago.
Mine is 5 cm X 5 cm and to large and in a weird place to get operated on manually. So they zap me.
Hi Brian,
I first found out that I had an AVM in '83 when I was 20. I had a bleed that resulted in a seizure, so I took a couple of weeks off and went back to school. Because the AVM was in my brain, the doctors decided not to operate.
For twenty five years I had no problems. Then in Apr. "08 I had a bleed. Unfortunately the bleed hit some nerves and I had a stroke, which left me with some facial paralysis, but my limbs are okay. I’m rehabbing and hope to be okay in another six months. Was it worth it to me not to have anything done in the intervening twenty five years?
Yes, because I was able to live a relatively normal life. But my AVM was considered inoperable at the time . After the stroke, the doctors performed two embolizations because they had to. I may get another embo and proton-beam treatment, but for now I’m stable.
Good luck with your decsion. Get a lot of opinions. I was lucky that I lived in Boston and there are a lot of medical facilities here. But go to other hospitals for opinions as well if you can.
Good luck,
Mike
My AVM was discovered 37 years ago. Their conclusion was that surgery would do more damage than good and could not do surgery. We were told it was in-operatable. Mine was monitored up until four years ago. The only side effect was migraines. They did not consider it stable but it was a choice I made or I should say my parents at the time and I continued that feeling after I turned 18. I have only had two pin hole bleeds which they really did not consider a bleed. I had my first seizure around ten years ago but they were able to control with medication. Five years ago the seiuzres got worse and I had problems with speech, balance and I was going down hill (still no bleed). Four years ago there was signs of growth on top of all the new symptoms and the seizures could not be controlled. It was then I decided to take the risk of embolization and radiation as the doctors suggested due to all the changes. I still have not had a bleed but it is not obliterated yet. I also have two aneurysms and as far as I know always did. For some reason my instincts told me to take the road I did and I trust in that alot.
Good luck with your decision and I hope my story help a little.
Lee Ann