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: 551
Latest Activity: Nov 16

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

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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.

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.


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