I am doing a project for my class and would love to know how having an AVM rupture or just an AVM in general has affected your life. Please comment on my post so I can know. Thank you.

Hi Emily,
Research Girl, Research. Just kidding, hope some folks respond.
You can also enter terms in the search box at the upper right of this screen to find already posted discussions from AVMers. Search for “rupture”. Don’t put in the word ‘AVM’ or you might get back thousands of posts. You can also search the members pages to see who all is from TX, and then search on some of their names to see their discussions.
Let us know how well you do on the report.
Ron, KS

Hi Emily. I would like to know how old you are. It would help in my response to you for your report! Perhaps you can post it on this site when you are finished.

Hi Emily. Feel free to read my profile. Ron has a good point. You may find out a lot quicker by searching the site.

Mine was discoverd in 1991 and I refused treatment for it. After I got over the shock of it, I lived a normal "healthy" (so to say) life. It wasn't till 2007 when I started to have seizures and I decided to have gamma knife. With the seizure meds I was on, I was still able to live a normal life. Until 2009, thats when I developed multiple symptoms that has made it impossible for me to work any more.

I think the biggest obstacle (of having an avm) to over come is fear. Knowing you have a ticking time bomb in your body. That could rupture or bleed at any unsuspecting moment.... makes life a lot more challenging (to say the least). I also think, it helps us to apreciate more the small and simple things in our lives. That we would normally take for granted.

Hi Emily
my name is Renee and I have been fighting with an avm since 2009. At first I was very upset and discouraged but it’s 2011 and I’m still here and count my blessings everyday.
I discovered the avm after a zipline trip that left me with a vision disturbance. Went to the doctor(after awhile) and they told me I had an avm. Within 10 minutes it was crazy! I then proceeded to research and scour the Internet for info. I went to UCLA to see doctor Neil Martin and at first he was all about surgery. Get I out! I screamed. In my head of course. But after what seemed like forever he decided against. It is too large and in a part o the rain that he is worried about it bleeding. It’s about 4.1cmx2.9cm. So pretty big and in the right cerebellum. I haven’t really had any symptoms except for the vision disturbance which they say is not really explained by where the avm is located. It affects the balance and coordination part of my body. Who knows?! Anyway now I am considered cyberknife. Which is a sectional radiation therapy. It scares me. What if I don’t come back the same way I went in. I know I need to think positive and be on the bright side and believe I am everyday but every once in awhile you freak out!
I am 37 years old and have had this avm all my life nothing has happened yet and I’ve know now for 2 years but your odds of it rupturing go up every year and that’s the most intimadating part. Do I do something because I have the ability to try to fix it or do I take my chances and let it go. Decisions decisions. I think ultimately I will have radiation and deal with the after effects as they occur.
Even with radiation your living with the avm for awhile. They will do mri’s and cat scan down the line to see if the radiation helped eliminate the avm but there is no definite that it will you have to keep an eye on it. Hopefully, fingers crossed, it does make the veins “die off” obliterate the avm all together. One step at a time
I hoped this helped a little.
Do you have an avm or are you just researching. And if you already said sorry I might have missed it

Hi Renee,

It might be more settle now about increased rates of bleeding as time goes on, but for years, there was disagreement in the AVM field about what was meant by "2% per year risk of bleed". Did it mean 2% year in year out, or did it mean 2% in yr one, 4% in year two, so that in not too many years out, you were pretty assured of a bleed? The one way, every year you have a 98% chance of no bleed. I don't know where the consensus is now, or if there even is one.

The 2nd thing I'd point out is that radiation in addition to obliterating by causing constriction is also supposed to toughed the vessel walls. Reduction in size of the AVM will show up on scans; I don't believe increased wall toughness will. So there might be unseen benefits of radiation. Certainly there is risk of collateral damage from radiation, as you stated.

Best wishes,

Ron, KS

Hello Emily,

I have known of my AVM since 2000, I had a bleed in 2003 and another in 2009. I also had Gamma Knife in 2009 it has been challenging with all the side effects. I fight everyday to have a "normal" life however, some days are better then others. I still have a long road ahead of me I am on cortisone and anti-seizure meds which both come with their own problems such as weight gain, weakness and tired etc. Everyday I wake up thinking about my AVM and every night it is the last thing I think of whether I want to or not. I hope this helps your project.


Hi Emily

I found out About my AVM in Dec, of 2010. I guess the way it has effected my life is all the dr appts you have to go through. The tests and procedures to confirm everything. The way it turns your life up side down. I was one of the lucky ones mine never ruptured. But that never stopped me from wondering if today was going to be the day. If I was going to leave my husband and 4 children behind. I had to go on seizure medications and are still on them to this day. Having to make hard decisions that would change my life. I had to put school on hold. I had to take alot of time off of work to go to dr appt or have tests done. I suffered frm chronic headaches and migranes. so i was always in pain. Most of my days where spent with burning in my head and sharp pains. I had my surgery on mar. 15, 2011, and now am AVM free and waiting to go back to work. the headaches are almost gone. and the sharp pains and the burning in my head is gone. so i am finally pain free. I hope this helps. I would love to hear how your paper goes. Good luck!!!


Thank you so much for your reply. This has helped my research immensly. The main point of my research is to see how AVM has effected different people. So thank you!!!

Thank you all so much for your help. My research is much broader now along with my examples. Thank you!

Hi Emily. I had an AVM bleed Aug 3 1988. I was able to make a full recovery and return to work work. Not everyone is able to do that after a bleed/rupture. However, as with everyone else on here my life changed that horrible day. It’s not that I dwell on it. However, I work as a Flight Attendant. I see people less fortunate than me every time I go to work. I have been able to help hundreds of passengers who are challenged in this world. People who are paralyzed…People with terminal cancer…people whose loved ones who have just died…Make-a-Wish kids …other Flight Attendants who had problems after 9/11. I go the so-called extra mile because of what happened to me on that awful day!!! So in a weird way it was a good thing that I suffered a stroke. I hope you do well on your report!