Before I started getting embolizations for my AVM I didn’t have any pain or discomfort of that nature but so far I’ve had 3 embolizations with an indefinite amount needed in the future possibly for the rest of my life and every time I get an embolization my affected area just gets larger and larger and the pain gets worse. Not just the sciatic nerve pain but just the AVM itself. This really scares me because I have to get it treated but it seems like the treatment is destroying my body.
Definitely nothing helping to add > but, geez - that’s awful. So sorry to hear 
. . . Makes my intracranial AVM like breeze - and, it felt like a solid buck shot to my head when I hemorrhaged and on
“Our” body is such a machine - definitely has its probs at times
I wish I had some sort of real helpful input 
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That’s okay:) just having someone to listen that understands what it’s like to deal with an AVM means a lot. Can’t talk to anyone in my life about it because that’s about as useful as a hair stylist talking to an engineer about career similarities haha
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@moonglow500 what you’re describing will be familiar I think to @Extremity AVMers: I’ve read plenty of stories from Extremity folk about the constant battle with embolization and similar questions about “Is it worth it?” I hope some of them will offer their experience / thoughts.
I also know the @Facial guys have as difficult a time. @Dave4 was struggling recently.
Very best wishes,
Richard
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Hi Moonglow! Im sorry to hear youre having such a rough go of it with the treatments. My AVMs are in my ankle, but I have also experienced worsening pain after treatment. I had several sclerotherapies and two embolizations, but ended up stopping treatment 10 years ago because the pain was becoming too difficult to manage. The pain has been worse lately and I went to see a new surgeon and to get a new MRA - he told me that for extremity AVMs, sometimes embolization is just not an effective treatment modality. I dont know if thats the case for you or not - but my first surgeon made it seem like additional procedures was the only suitable response, and it was nice at least to hear that no, it’s more complicated than that. He acknowledged that more treatments now could help, but could also make it worse. It happens, apparently.
If you have means and access, it might be worth your time to have another surgeon look at your imaging, tell them the issues youve been having, and get a second opinion on continuing treatment.
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Thanks Richard!
I’m so stressed out I feel like it’s a catch 22 because my AVM is very severe it’s pretty much my entire left butt/hip and then through my pelvis is just one huge AVM. My doctor told me that mine is the worst he’s ever seen. So he said that without treatment I will probably go into heart failure and lose my ability to walk. But at the same time the pain and size is getting worse everytime I treat it. And I have to treat it because I’m trying to get on disability because I really need the health insurance and if I don’t treat it then I won’t be approved, or if I got approved and then stopped treating it, I would stop receiving benefits. I feel like there’s no winning option and I’m getting very overwhelmed and exhausted mentally. I kinda just want to sit and cry all day because I’m so stressed out. But then again I cry over everything lol.
That sounds like an impossibly difficult situation to navigate. Im sorry youre in the position you are. My AVMs are not life or limb threatening, so I have the luxury of choosing for myself. It sounds like your situation is more complex and may actually require treatment. I wonder if there are options available to you to help manage the pain? Spinal cord stimulators, etc if youre in a position where its more pain or an even worse outcome.
Either way, my best advice would be to see another doctor if youre able. A second opinion should help with your disability proceedings, too, and maybe give peace of mind that have explored all your options, limited though they might be.
I hope you can find some relief and peace with this.
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I did have Dr.Robert Rosen in New York look over my scans and got a second opinion from him. He didn’t really tell me anything different from what my current doctors already told me. Also my conversation with him was very brief and he didn’t expand much on what he told me. He did say however that if I were to be treated by him, he wouldn’t do it hardly any different from how my current doctors are handling it.
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Hi, I’m so sorry to hear your pain is getting worse. I have a high flow AVM in my left elbow pressing on my ulnar nerve, plus an aneurysm which thankfully was dealt with! Totally understand how nice it is to speak with people in similar situations, trying to explain the pain of an AVM is very difficult. In total I have had 15/16 (I lost count) sclerotherapy procedures under GA in the space of 5 years. The pain at the start of my AVM was unbearable, GPs didn’t believe me because I was young (16yrs old) and it took 5 years for me to get diagnosed, the pain got worse at 18yrs old and I would take any pain medicine I could get - without sounding like a druggy. It would keep me up at night, the throbbing sensation would make me nauseous, the pain medication made me drowsy (when I final got prescribed the good stuff). I’m a nurse so I wouldn’t take anything strong during shifts - I honestly wanted to amputate my arm. BUT, now I have very little discomfort, I am due a check up and I do think I may require another embolisation soon and unfortunately, I will also need this throughout life. However it did get better 
My first doctor in the UK I met when I was 21 told me I could never have children because if I got pregnant the increased blood flow, hormones etc. would make the AVM swell and rupture… my second doctor in london when I was 25 told me this was incorrect information and the previous doctor should have never said that. So I will be looking for a 3rd opinion. I’m now 32yrs old. So in short… the treatment worked for me in the end, but it took time. Sorry for the long post!
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Hopefully my pain gets better with treatment such as in your case