Extremity and Other Non-Brain AVMs


Extremity and Other Non-Brain AVMs

For those of us with AVM's outside the brain. Facial, Spinal, Lungs, Arms, Legs...wherever!

Location: medical/symptom type groups
Members: 546
Latest Activity: yesterday

Discussion Forum

Possible brain avm?

Started by Tylerbyler. Last reply by dancermom Sep 27. 1 Reply

Leg AVM and DVT

Started by Kylielonners. Last reply by Kylielonners Sep 26. 4 Replies

Left foot has been bleeding profusely.

Started by leela_pip. Last reply by Christina Mullins Sep 21. 4 Replies

Comment Wall


You need to be a member of Extremity and Other Non-Brain AVMs to add comments!

Comment by Westwin yesterday

Hello All,
Just joined the network and this discussion. Reassuring to me that there are others with similar issues and this seems like a nice location to learn and to educate through our experiences.
Keep posting.

Comment by Tylerbyler on September 26, 2014 at 6:36pm

Hey guys! It has been a while since I have been on here. I hope everyone is doing well.
I just was going to see if anyone had any advice because I know you are all very knowledgable on the topic of AVMS.
So I went to chicago last summer to finally have my AVM in my L arm taken care of and they couldn't fix this because they found a "connecting" on in my chest they needed to take care of first.
long story short I just had a brain MRI to make sure I don't have any in my brain. They called today and said "there are no active AVMS, though there is a venous malformation."
Anyone know what this could mean since its not arterial? (or they don't think it is right now)

Comment by dancermom on September 26, 2014 at 10:10am

We have a good number of members who have used bleomycin, especially those with facial avms. There is a limit as to how many treatments can be used, as there it a theoretical risk of lung problems over a certain amount, though no one has reported lung problems on this site. There is less risk of damage than with ethanol. If you type bleomycin in the search box at the upper righr corner, you can pull up those posts, jas.

Comment by jascarpentier on September 26, 2014 at 10:07am

They have used the foam and the ethanol agent on me in the past. I think they are trying Bleomycine now

Comment by dancermom on September 26, 2014 at 9:24am
I don't know anyone who has done cryo, jas. I have always wondered whether that would be a good treatment option. What embolic agent does your doctor want to try now? One thing to find out is whether sclerogel is available yet in Canada. It is in Europe, but not in the States. It sounds promising to me.
Comment by jascarpentier on September 26, 2014 at 9:18am

Hello! Not to sure where to post this but I had a question about an experimental treatment that my doctor offered me this week. I have an AVM in my left knee since I was 7 and I am 20 now. Because of extreme pain I have had to quit the competition sports I was in and really alter my life according to my knee. The doctors have told me for a really really long time that my malformation is so small that it shouldn't and couldn't be causing me this much pain which made me think I was a hypocondriacte at a really young age. My AVM is not a big mass, it is more like a huge intricate spider web in my muscles and fibula and knee cap. Only recently they have told me I am not crazy and that I have reason that it cause me so much pain. Anyways I have had 4 embolizations in my life, the most recent in this past April, with absolutely no change to my state. The doctor has offered me to try the same procedure but with a different medication instead of the mousse or that there is an experimental treatment ( I forget the name ) where the cryo-freze the area to try and kill off the malformation. In my case I am trying the different medication because it is the least sketchy because of the major nerves they could potentially kill and then loose the use of my leg.I was just curiose if anybody has heard of that treatment or tried it ? Namaste and much love to you all !

Comment by dancermom on September 22, 2014 at 2:36am

I would recommend you leave the same comment in the Spinal AVM group, Christina, so those members have a chance to respond, too.

Comment by dancermom on September 22, 2014 at 2:34am

Christina, sometimes members express a sense of "unworthiness" when they join, when they see others with more challenges than they have, but please don't feel that way. You have plenty going on, and you should fee comfortable posting about any issues that arise. AVMs are so individual that it is hard to predict how your recovery will be, but I hope some of our members here will share their experiences with you.

Comment by Christina Mullins on September 22, 2014 at 2:25am
Hello everyone! I am brand new to the site. A little about myself I had a laminectomy in July 2012 to remove a spinal AVM in my spine and to also have an AVF removed. Surgery went well excerpt for a spinal fluid leak I had after I went home which sent me back to the hospital for another week with a drain in my spine. I have tried to research my particular condition, but it is extremely rare. Most spinal AVMs are found in the lower backs of middle aged men, mine was in my neck pretty close to the base of my skull and I am now in my late 30's. I have had a difficult time since my surgery, and after reading so many of your stories about rehab, ruptures, and bleeds I sort of feel like I shouldn't complain and I am not really, but I am just not the same. Right after my surgery they checked my bolls sugar every couple of hours for 4 days they said that rerouting a persons blood flow can change certain things. I am just not the same person that I used to be I have a constant headache. My neck and left shoulder hurt and I have neuropathy as well. I am on Lyrica, Baclofen, and Vicodin. I made the mistake of letting my Cymbalta prescription run out and since I have moved and changed insurance companies I am waiting for my old neurologist to renew my script until my appointment in Nov. with my new neurologist. Sorry to be so long worded but my question is does anyone know if or when things get back to normal for someone like me?
Comment by zaza on August 5, 2014 at 4:13pm

Hi Miriam, I had coloration on my leg as a tween but my AVM started to really change and cause swelling and was diagnosed when I was 14. It is in my left ankle and goes up to my knee but isn't too noticeable on my skin. It was active, moving, growing all through my teens. By the time I was 20 it stopped growing or moving and was very, very stable every year until I was pregnant with my son at 36 when again it was active, moving, swollen and sore. After I stopped breastfeeding my son it was again very stable. It really did react to the growth hormone in my body in those two times but never got to be very painful or stopped me running or skiing or doing anything I would normally do. I did (and do) wear compression stockings most of my waking hours and that helped a lot. I also moved to a cool climate city from a hot one, which also helps. Good luck to you and your daughter. I remember how scary it was to not know exactly what was wrong with my leg.


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