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: 558
Latest Activity: yesterday

Discussion Forum

Foot avms

Started by munchkin. Last reply by lesley on Monday. 10 Replies

Avm treatment in Australia

Started by munchkin. Last reply by Janey Jan 21. 1 Reply

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Comment by Msamberxo on January 21, 2015 at 9:07pm
Hi tinkersyl I have never had spinal stimulation but it was suggested to me by pain managment. My avm is in my hip and I also have bad nerve damage from attempted excision I was on gabapentin for 6 weeks, it gave me terrible side effects and didn't help the pain at all. I also was put on many other drugs to try and help a antidepressants antiepileptics Lyrica and a few others but nothing helped so they suggested the next step might be a spinal stimulation implant but as I am only 26 years old I opted not to have it done yet I'm still hoping they will attempt to remove it again although they say I could lose all mobility in my leg. I hope your doing well!

Comment by dancermom on January 21, 2015 at 11:47am

Hi, everyone, I see that activity has wound down a bit in this group, and some of you have posed questions with no responses. If that should happen, feel free to use the "Send message to group" feature about the members' picture her on the page, and hopefully that will bring some respondents here. Wishing you well, Light, JLizotte, and Tinkersyl.

Comment by tinkersyl on January 21, 2015 at 11:40am

sorry it has taken so long to update,I had muscle necrosis in my leg,yes I lost my vastis lateralis muscle and I was told I wouldn't walk again I am walking now I have major nerve damage and am on gabapentin it doesn't help so they are talking about putting me on spine cord stimulation has anyone had this

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?


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Posted by Captain Tilly Harkness on January 27, 2015 at 7:04am 17 Comments

After 8 weeks out of hospital I have been feeling quite anxious and worried about my brain bleeding again and how my avm is healing but on Friday I had my first panic attack and it was not nice. My friend took me to my G.P who was brill and gave me… Continue

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