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AVM Survivors Network

I'm not a candidate for embolization

So from what I understand I am not a candidate for embolization because there is no one vessel that would close any of those veins. That means I am also not a candidate for wide excursion (as I will almost certainly hemorage) or having veins tied off. I have done sclerotherapy and it hurts more than it helps. Seems to make it worse as this thing seems to be aggressive. Like every time he closes those veins they open back up and become larger. So the point of this post is what treatments are left? I am not willing to try more schlero therapy. It’s not worth it. I am seriously considering amputation (I’d like to do more reasearch though before I address this with my doctor) and I know I would be just fine without my leg. I just need to know if there is anything else because i know my doctor will want to do ANYTHING else. I am not willing to risk henorrage during a wide excursion as it will probably grow back (like an 80 % chance as it is a very complicated AVM.) It wouldn’t be worth it. I know the doctor will try to stear me away from amputation but I really think it is the best long-term solution. Thoughts?

Hi there Julie,

I am sorry you’ve been through so much with trying to seek successful treatment and with your AVM.

The only treatment that comes to mind is cyber knife - it can be used with high precision for most AVMs I beleive and can be focused at many angles too. So I’d recommend looking into clinics that use cyber knife and have experience with AVMs for opinions.

I hope you find sucessful treatment without amputation - but I can completely empathise with being at a point when your fed up and just want the AVM gone. If it comes to the point where you did need to amputate, as you said you will still live a full and happy life.

Best of wishes and hugs

Corrine

My doctor also considered embolization for my brain AVM (five years after the gamma knife surgery that destroyed everything but two areas each 0.5 mm by 2 mm) and after I was sedated they did the angiogram. Unfortunately, my results were much the same as yours… the blood vessels did not feed the AVM directly and I woke up un-cured. I had the gamma knife again the next year, and my following MRIs showed that it was successful.

Unfortunately I think they only use the gamma knife on brain AVMs mine is in my leg. Hate it.

Hey @Extremity folk, a call out from Julie, if you can help.

Maybe you’ve already seen this but recently there was a study published by University College London Institute of Child Health and Great Ormond Street Hospital (GOSH) .“They found four faulty genes that could trigger the condition, all involved in the signalling pathway between cell surface receptors and the nucleus. The same gene mutations are also involved in the growth of many cancers. There are several licensed cancer drugs that target the faulty RAS-MAPK pathway.
The discovery means doctors now have the potential to treat AVMs with cancer drugs.” Here’s the link for the full article https://www.bbc.com/news/amp/health-43119315
I don’t know if that treatment would be applicable for your avm but thought I’d share just in case

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Hello Julie,

Amputation will eliminate the AVM that has been bothering you, however there is some degree of chance that you may develop an AVM on or near your leg stump. I looked a bit further into left lower leg amputation to eliminate once and for all my AVM that lives in my left foot. I met with a renowned Orthopedic surgeon that works in Aspen, CO and among other things specializes in amputations. He advised me to give the embolization route a chance before cutting off the limb. I joined the Amputee Network to obtain additional insight and met with a local prosthetic maker to understand what I’d have to look forward to. Some of the additional things I learned: 1. life can eventually be normal and enjoyable with a prosthetic limb. 2. Cost- for me there was the cost of the surgery and recovery and the cost of the prosthetic creation (every 18 months to 24 months). Each limb can be $15k. If your AVM is low on your leg, the surgeon may be able to complete a below the knee amputation, which generally presents fewer challenges to the patient than recovering from the above the knee amputation. There are two types of bone stabilization that can be carried out when doing the amputation. One of the two amputations is generally thought of as more stable/permanent foundation for the patient long term.

I went with the Ortho surgeon’s recommendation and had a series of six embolizations that amounted to a combination of angiogram injections and direct (through the skin) injections of glue and alcohol performed by Dr. Chris Hampson in Grand Junction, CO. So far it appears to be working as my foot has stabilized and healed to the point that it is functional and I can carry on with normal life with minimum limitations. Whatever you decide to do, everyone here will be rooting for you!

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Hi Julie,
I understand the thought to amputation. Check out the extremity AVM facebook group. There are a few people there who have done leg amputations who might be able to offer insight. I would say I understand the feeling. Mine is a VM and with each pregnancy it grows. I would suggest a second opinion. I know you might have to go out of state to get one but I would say it can’t hurt to have one more opinion before you chop it off. I have considered it for mine after dealing with it for 20+ years now (discovered at age 10, now in my 30s). I just get sick of the pain and management. Mine is completely with in one muscle, so I decided I will likely just aim to get that muscle removed. But it has now caused arthritis in my ankle due to weakness in the muscle, and sometimes I think maybe life would be easier with out that joint too. Good luck!

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Thank you so much for responding. I have been told that since my AVM was complicated by a horizontal gash that went down to the bone and the man who repaired it had to sew the complicated mess of veins back together it made it worse. So embolization is not really a good option. It would be quite painful to recover from and would do almost nothing as there is not one feeding vessel that feeds the whole thing aside from my femoral and you can’t really close the femoral artery without killing healthy tissues. It’s very frustrating because I feel I don’t have the same options as other AVM sufferers because I just so happen to get hit by a truck and it went almost completely through my leg EXACTLY IN THE SPOT WHICH I HAPPEN TO HAVE AN UNDISCOVERED CONGENITAL DEFECT! It’s all very frustrating.

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Julie,

I know this is so difficult but I am very pleased that the extremity guys have rallied round to try to offer some support and insights.

Very proud of you all. Thanks from me :heart:

Richard

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Julie,
Do some PRAYING for the answers for you!
That really DOES work, I feel!!
Lisa