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AVM Survivors Network

AVM in left leg

Hello, I am interested in more information on AVM’s in the leg. I was born with a very large AVM in my left leg and have been to several doctor’s at many different hospitals for consult. I’m currently being treated at the University of Virginia, and have been since birth. I’ve had twelve surgeries, starting at the age of 10. I’ve had well over 50 embolization procedures, the last one just a week ago. I’m now 63 years old. I’m suffering terribly with pain and swelling. It’s difficult to be mobile for any length of time because of the pain and swelling. This has been affecting me my entire life. I’d like to find someone to help with this issue. Thank you.

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Hi @jcm

It’s good to have you join our community!

We do have a group of @Extremity AVM folk with AVMs in their leg. I do hope some of them will be able to share their experience with you.

My AVM is in my brain, so I’m a bit different from you but from all that I’ve read here over the years, it seems to me as though extremity AVMs are among the most difficult to deal with. I do know we have a handful of people with an AVM in the leg, so I hope someone can relate real well. A lot of the folk are younger than you, so being able to share how you’ve got on over a much longer time than most will help them, too.

Welcome! Very best wishes,

Richard

Hi Richard,
Thank you so much for your response, it’s great appreciated. Prayers to you with your AVM. I can’t imagine how that must be.
Jayne

Jayne,

Hi. It’s good to hear from you and I hope you’ve had a good Christmas holiday!

I have to say that I feel very lucky. (I’m reminded of Michael J Fox’s book “Lucky Man”). While having a brain AVM frightens you half to death, I have had one embolisation and, so far, that seems to have sorted me out. I’ve not had a bleed (which obviously wreaks havoc in the head) and I carry on life as normal. I went through the mill with it about 3 years ago but the last 18 months has been just fine.

I have to say, my reading of extremity AVMs – for example in the leg – is that they seem to be rotters to get on top of. All of the stories I’ve read from people in a similar position to you seem to have rather a lot of embolisations. It seems to me that extremity folk rarely get to the position I hope I’m in of it being fixed for any considerable time. My own personal theory is that enclosed in my skull, my AVM is pretty untouchable and I’m hoping stays fixed for a long time. Where you have an AVM in a limb, it must be subject to all sorts of interference, flexing, bumping, and so on and maybe it is that more vulnerable, more flexed situation renders the embolisation less successful than locked up in a skull.

Or, I’m being prematurely optimistic about my own situation… I don’t know.

I do hope some of the Extremity folk will see your call and share a bit of their experience. I think we have a spread of people with AVMs in the leg, in the foot, in the hand but the issues with any of those are similar, I think.

Wishing you all the best for the year ahead!

Richard

Hey Jayne!

My names Hope, and my AVM is in my left foot and up my ankle. I’m only 23, and didn’t start my embolizations until about 3 years ago. In that time I’ve had 5 of them. I can agree a lot with what @DickD said about extremity AVM’s being more subject to bumps and outside everyday traumas. That, in turn, being the Achilles heel of our extremities. (I hope that makes sense) currently, I’m being treated by Dr. Vogelzang at northwestern in Chicago. He is my second IR doc I’ve seen, as my original became stumped with my AVM and sent me on to someone with more experience. But, it seems like embolizations that just don’t last are the answer to my pain. I’ve changed my major from premed to nursing because I can’t keep up, and my foots shown itself to be as unpredictable as ever. How have you managed so long with your AVM? Is it more deep or superficial? Do you have any tips/tricks you use for pain when it flares up? I’ve found heat and elevation are my saving graces. I hope this finds you well and if you ever want to chat, you Know where to find me :slight_smile:

Hi Jcm,
Sounds like you have fought a good fight. I have a similar story though not quite as long(ankle AVM discovered at 10 now 35). Dr. Wayne Yakes is the US expert in extremity AVM. It might be worth a consult, honestly don’t think it could hurt much more than your pocketbook. I also know there are some who have gone with amputation. Its not an attractive option for most and depending on how far your AVM goes it may not be an option. I presume you’ve tried the standards, ice or heat depending on what works for you, compression or not depending on the depth of your AVM, pain killers (gambapentin, narcotics, pain patches/creams depending on depth, etc.), and elevation. It sounds like your AVM might be changing this could be remodeling due to a procedure or hormones. I keep hoping that menopause might help me but sounds like that’s not a sure thing either. It might be worth a consult with a ortho oncologist to see if amputation is an option. It will take away the pain but it might create a host of new issues. hugs There is a great facebook community for called Extremity AVM if you do facebook you’d likely get some interesting advice there also. For now I feel your pain. I’m tired after dealing for 25 years. I can’t think how I’ll feel at 50 years of dealing with this.

Hi Rachel,
Thank you so much for your response. It’s more helpful than you know, to hear from someone else with similar issues. I am so sorry, however, that you are dealing with this in your ankle. I hope that yours will get better, definitely not worse. Unfortunately, my pregnancy really created major issues which I have been suffering with to this day. Of course, I have a wonderful son from this pregnancy, so I am very blessed. Menopause did help somewhat. Monthly menstruation was a terror with this leg, so good luck with that. I’ve had so many embolizations and all of the things you suggested. Amputation isn’t an option because of the extent of the malformation (hip to ankle). Could you tell me where Dr. Wayne Yakes is located in the U.S.? Thank you so much and again, best wishes to you!

Jayne

He works out of Swedish medical in Denver CO Area I think. https://www.theyakesvascularmalformationcenter.com/wayne-yakes-md
I’ve personally never seen him. My AVM is very isolated to one muscle only and has never been overly challenging for most IRs. It just keeps regrowing. Also in the deep ankle it has impacted every time I move my foot. The reoccurring damage due to treatment has led to 2 breaks and countless sprains which means I have osteoarthritis in the ankle (as of age 32). Mine also acted up during both pregnancies and is most noticeable during high progesterone phases of my cycle. I’m happy to be off birth control and done with having babies. YAY for male (semi-permanent) birth control. Best of luck to you! I hope you find some relief.

Hi there!
I just joined this group and I’m so thankful to be a part of this community!
Diagnosed with an AVM at age 8 (I’m now 45) and have had about every kind of treatment you can imagine - Feels like I’m a medical experiment at this point. This original post is about needing more info on AVM in leg - Mine is my right arm. Have you tried cancer treatments yet? That is the latest thing apparently and I’ve been on them for nearly 3 months now. More later, just wanted to try and contribute in some meaningful way.

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