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: 554
Latest Activity: on Monday

Discussion Forum

Chest AVM

Started by Alan Schechter. Last reply by Alan Schechter on Monday. 11 Replies

Do AVMs spread

Started by Greg McGuire. Last reply by Michelle Dec 9. 4 Replies

Comment Wall


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Comment by jlizotte on December 10, 2014 at 9:51pm

Is it normal to have an ulcer on the outside of the skin where the AVM is problematic? I have an AVM in my wrist, and it's caused so much trouble throughout my whole arm. A few surgeries ago, a clot developed in the thumb and I had to spend some time in the ICU. Since then, every time they do a procedure they tell me that there's a risk of losing my thumb. Sometimes my thumb will swell up really bad, but the swelling always goes down. Yesterday, however. I thought I had a blister, but nope. It's an ulcer. I've had one before, shortly after an alcohol embolization. Meanwhile, my thumb is almost completely numb and another ulcer is forming right in the same area.

Comment by LightInOurLife on December 1, 2014 at 10:30pm

Has anyone come across something similar like a bed-wetting alarm that can alert if an extremity AVM ulcer bleeds at night in sleep? Basically looking for some kind of a sensor or alarm that can alert/beep if the bleeding happens in sleep?

Comment by Claire on November 14, 2014 at 12:49am
I'm worried something isn't right. I had my avm embolised in Feb which resulted in nerve damage.
I have the extension of some of my fingers now but not all. I have no rotation to my arm/hand and my grip is very poor (lefts hand 32 right is 2.5)
I cant straighten my arm either, I suffer pain but lately its been a different pain (if you know what I mean). I struggle more with holding my wrist up.
I had physio on Tuesday and she pushed me to the limit, which was a good thing as my arm went red/ purple and limp, which was document and she physically saw it.
When I tell the Doctor they just look at me asthough I'm lying but now I've proof.

I'm feeling fed up and suffering from Anxiety as I am on edge day in day out as the Doctor has said my AVM could grow.
Is anyone else feeling like this
Comment by Clarinetgal on October 27, 2014 at 1:34am
Thank you, Jltheriot! How many Embolizations have you had? My follow up is this Tuesday, and I'm guessing I'll have to have at least 1 more.
Comment by Jltheriot on October 26, 2014 at 2:15pm

Welcome Clarinetgal!
I also had embolization procedures with onyx for my AVM which is located in/near my knee. I hope your procedure and your follow up go well! I am glad you found this site- it has been a lifesaver for my family and I :)Feel free to message me if you need anything!

Comment by Clarinetgal on October 26, 2014 at 2:54am
Thanks, dancer mom! I'm being treated at University of Washington.

Comment by dancermom on October 25, 2014 at 3:37am

Welcome, Clarinetgal. Feel free to ask questions in comments here, or in a discussion above. Memmbers here may not be regulars on the site, so if you have trouble getting responses, there is also an option to message the members of this group -- you'll see it above the member pictures. Where are you being treated?

Comment by Clarinetgal on October 25, 2014 at 2:56am
Hello! I just joined this group. My AVM is located in my right thigh, about 6 inches above my knee. I also have two venous malformations around my knee. I had my first embolization on Sept. 9 with onyx, and I will have my follow up this coming Tuesday ( the 28th).

Comment by dancermom on October 24, 2014 at 5:50am

Westwin, sorry I didn't greet you sooner. If you have a question and don't get responses for some reason, there is an option to message the whole group above the member photos where it says "Send Message to group." How are you?

Comment by Westwin on October 21, 2014 at 7:05pm

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.


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