Embolization with alcohol- any advise?

Hi group,

Im new to this forum so i appologize if i dont do this correctly. My son has a high flow AVM on his foot, more specifically his toes (pics on my page) we battled several different specialists before finding a diagnosis which took us by surprise since we had been told it was a skin condition for so long. This has all been a whirl wind since the diagnosis just in may. Because of the extent of his AVM we, within weeks, had an MRI then Angiogram. Our interventional radiologist has determined the best course of treatment as an embolization with alcohol to treat.

Because the AVM is at the toes, there is a 30% chance he can loose his 2 toes during the procedure. We opted for 2 treatments rather than trying to get it all in one because, as we understand it, rather than trying to 'burn off' the 90% of the artery that needs to be done, we can do 40% the first time then go again for the remaining 50% in apx 6 months or so. This is supposed to lessen the effects on his lungs from the alcohol and lessen the chance he looses his toes during the procedure. We do this on monday morning.

this website is the first resourse since i started looking in may that i have really learned anything from. when i search, all that comes up are brain avms. I guess what im looking for is some advise and/or expierences with this treatment and what to excpect in terms of risks/recovery. My son is only 6 so it makes it difficult, if it were up to him he would never see a needle again in his life (hes deathly affraid) and he would just keep his "purple toes" the rest of his life...but thats not an option so the more prepared we are, the easier to comfort him it will be. Sorry for the novel, i look forward to hearing from anyone.

Also, if anyone is around the san antonio area or has expeirience with Dr. Lutz (interventional radiologist) i would love your opinions as well! Thanks

Hi,

I understand completely all your fears...my daughter Jess has a facial AVM in her right cheek...she just had her 8th embolization, she is 17. Hers wasnt noticable until pre puberty and was told we had to wait until puberty was over to start the procedures...she too had lots of mri when she was 10...luckily her did not effect the blood vessels in her brain, only the cheek. The embolization procedures she has had have all been with alcohol, because her avm was large they could only do certain sections at a time...althought she has had procedures, we are definately making progress and she may only need a few more at this point.

As far as the procedure, the first one was scary because she did not know how she was going to feel after but the worst part she had was the nausea from the anesthesia...the pain wasn't that bad she said and since they say alcohol works best , that is the route we have been taking for the past 4 years. I don't know about how it works for the toes...but imagine its the same...the area will be swollen and applying ice on it afterwoods should help. She never complained that much about the pain as long as she had ice on it...

Good Luck, I hope all goes well, her procedures are long and then the lying on the back for 6 hours is the toughest, but I know all will be good...just bring some food and books to occupy yourself with while the procedure is going on , thats the hardest part... the waiting...


thanks! the dr feels confident but its scary being the parent and never going through this before. your daughter seems so strong to have gone through all these procedures, i hope my little man can be strong also. Thanks for your advise, it helps to know others who’ve gone through this also.

Knowing your not alone definately helps...who would even know such things exists if it didn't happen. I never heard of such things and now, I am sooooo aware.

I'm sure he will be strong, its heartbreaking to watch your kids have to go through such things...at least it was caught early and hopefully this will all be a bad dream by the time he is a teenager.

I think its best to be able to take care of it when they are young. Its just tougher on us...

I was told that if we found Jess earlier, it would not have gotten so out of control and would have been less severe, but how would you know to even look for such things???

I know now, when my kids have kids, I'm gonna make examine them from head to toe and get xrays of every inch of them......lol