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AVM Survivors Network

Can a pelvic AVM be removed?


#1

Hello, all.

So I am still waiting for all of the puzzle pieces to fall together while I’m figuring out this whole AVM thing and going through more diags to see the full extent of it. But as it stands now, my doctor, a vascular interventional radiologist, told me quite explicitly and repeatedly that in my case, removal is not an option. My pelvic AVM is quite large from what I understand (128.2mm x 57.1mm) and apparently that is why it can’t come out. He didn’t exactly give me any reasons why. He just said things like it’s very large and severe and will be much too difficult/dangerous to take out. But my problem is it’s so large that it’s causing pelvic congestion syndrome. It’s pushing up against my kidney and like four other organs that I can’t even remember. I’m in constant pain and it pushing up against my kidney has already caused one very severe kidney infection. From my understanding the treatment is to go in with tubes and block blood flow to the AVM thus letting blood bypass it altogether and then basically just leave it there. But with it’s size and the pain and other problems it causes it concerns me that removal is not even on the table as an option right now. Now, this was coming from a vascular interventional radiologist and not a vascular surgeon. With all due respect to him and his immense amount of knowledge, from my understanding surgical removal is not entirely his specialty. I’m just wondering if anybody on here has had a pelvic AVM removed? I know that it can’t be partially removed because it will just grow back. It has to either be completely removed or not at all from my understanding. I’m just concerned that we’ll treat the AVM but I’ll still have the pelvic congestion syndrome and kidney infections and near constant pain for the rest of my life just from the large mass being in there and taking up so much space. So does anybody have any experience with this? Can these things be removed? Was yours removed? If so, how big was it? Any and all information is greatly appreciated.


#2

This relates directly to my current treatment, so I thought I wd answer. I also have a huge pelvic VM. After 12 superficial embos, with difficult recoveries, the most recent MRI showed the deep portion of the VM. This explains the buttock pain I endured these past few yrs! I saw the MRI with contrast, it was a very aberrant vm, deep in pelvis. No direct stick with wks of wound healing. This is sore, but deep. I was wrong to assume that previous embos just caused " collateral circulation" to build up in healthy veins. Not at all, when superficial veins were obliterated, the NIDUS was exposed. I am 63 and sick of this merry-go-round, so I endured deep pain for 4 yrs. Whenever I sat, I winced until I maneuvered my sitting to the other side. Glad I persevered.