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AVM Survivors Network

Treatment for painful AVM?

(I am a 25 year old female with an AVM under my right buttock. Yep, looks like I've got one long butt cheek. The AVM seems to be non-threatening. Just a scary thing with lack of solid information on these things.)

For people who have long withstanding AVMs (I suppose that's all of use, right?) and have gotten some type of treatment... who you suggest treatment to a person that has intermittent pain at AVM site, but nothing more consistent that a few weeks. The pain comes and goes. And I'm trying to ascertain wether or not this is something that can or should be messed with. A previous doctor said that the pain may come from a natural emobilization process. I was lined up for ethanol treatment, but didn't have the funds to cover what my insurance wouldn't cover. However, now, I have the opportunity and money to seek treatment again, but my insurance expires in July. It seems like there might be a lot of residual dealings and that it may be a bad idea to mess with this thing when my insurance is so close to expiring.

As far as I know, my AVM is harmless (other than the pain). Are these things really harmless when they aren't in a harmful area? I would be really fine with the pain and not seek treatment if I had some amount of confidence that this thing really is okay. I try to trust it a little since I've had it since I was born and it has hurt for ten years now and nothing bad has happened.

What do people think? Is treatment worth it when it doesn't seem life threatening. Are these things really harmless even if they are painful? Has anyone else experienced a "natural emobilization"?

-Much thanks and love,

Personally… I would get it treated while I still have insurance. With avms, the blood vessel walls are thinner than a healthy blood vessel. The risk of a rupture or a bleed are pretty high. If it ruptures, then you will have another problem to deal with.

Like Ben said, the risk is that they can rupture. At least the ones in the brain can. The other thing is due to the weaker vessel walls, they can stretch and (in the brain) put pressure on other ‘good stuff’. Seizures are often the result, and sometimes the first indication, of an AVM present. I don’t know what the other effects of a “butt AVM” would be other than pain.

For us, a key deciding factor was we could get the AVM treated in a calm fashion, at a facility and DR of our choice. If an AVM ruptures, the nearest hospital and DR will be operating on you. For us in the midwest, that might mean your surgeon read once about AVMs in med skule. Not like a surgeon that works 40 hrs a week taking care of AVMs. A no brainer for us to decide.



Hope this helps.

Ron, KS

Hi Tessa,

I'm 20 yo and think i have the same or very similar AVM currently on my right butt check as well and it does make one side longer than the other which i hate! i am getting my first surgery on mine in one week although because i am with the public healthcare system i don't have to worry about paying for it but for me the pain and discomfort of not being able to sit on uncushioned surfaces for more than 5 minutes sometimes less is definitely making the decision to go ahead with a DSA Embolisation a very good decision even though i am absolutely petrified about it as i have no idea what's going to happen. You are lucky that you feel like yours may be getting smaller, i think mine may be getting bigger but am not 100% sure on that it just seems like these days it much much more painful than it was just over a year ago when it was first discovered.

if you can get it treated before your insurance runs out which makes it way cheaper i would go ahead and do just that. better to fix it than leave it i believe, plus it will mean you get an even butt!

I have One on my left check found mine in 2004 and im 44yr old now a lot of pain now ist hitting the nerve in my back I done told the doctors I was not doing the alcohol injection or the glue I was i pain enough and In my opinion find a doctor that has a lot of knowledge in avms and deals with them all the time .because I got a hold of the wrong Doctors makes me not want to see one ever again.but I wont give up.and dont you.

I have an avm there too, would love to know how it went for you and anyone else. Mine was big after a pregnancy then emboli zed and now after second child even bigger this time…

i have an avm in the same spot. i have had an embilization done and some injections done its still very large but the color has gotten a lot lighter. i think the emolizations and injections work great.

I have one in that same location as well. I have now had 4 embolizations and don’t feel they helped with my pain. But, did somewhat reduce the size of the AVM. You can’t see it on the outside now when you could prior to my procedures. But, as you know every circumstance is very different. I wish you the best!

Hi have any of you gone through any more treatments ? I have now had my third child and they are recommending me go through the surgery of removal… I am terrified about the post op and since I live in a different city I find it very diffucult to even plan this surgery out . Anyways please let me know any of your updates thanks