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: 534
Latest Activity: 3 hours ago

Discussion Forum

Limb AVMs (legs and arms)

Started by Samantha. Last reply by Redhairedwench 3 hours ago. 6 Replies

Update on James and Boston Children's

Started by wee724. Last reply by Samantha 19 hours ago. 6 Replies

AVM Doctor at the Mayo Clinic, Jacksonville?

Started by Jaycee. Last reply by takemeasiam on Tuesday. 2 Replies

Comment Wall


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Comment by Msamberxo 4 hours ago
My avm is in my hip I have nerve damage of the sciatic femoral cutaneous and sapheneous nerves from surgery. I also live with daily pain numbness in my leg and extreme nausea. I know how stressful and hard it can be to get through those bad days so if there is any way I can help I am always willing to share my story and my doctors if it can help in any way! Hope your doing well.

Comment by dancermom 16 hours ago

Please take a look at Samantha's discussion about limb avms, and give her some feedback if you can.

Comment by dancermom on Thursday

I imagine the pain is kicking in for you, Lou. I'm sure you are in for some rough days. May they pass swiftly.

Comment by LoulouYorkshire on Thursday
Good luck Steve. I'm over here recovering from massive surgery, facial avm removal and face restructure. I have no wish to ever go through this again. So I really hope that your procedures go without hitch and you recover swiftly. All the very best

Comment by dancermom on Thursday

Thanks for letting us know, Steve. We will be thinking of you tomorrow and praying that all goes well.

Comment by Steve on Thursday
Hi all, just wanted to say thank-you to all of you for your support over the years. This site and all of you make a tremendous difference in peoples lives, by sharing your experiences and encouragement you held people cope with what seems like a never ending saga with these AVMs. Tomorrow morning I will undergo an embolism of an aneurism that formed off a new AVM in my left jaw. If that is successful without a major bleed then a second embolization or maybe more during same procedure to legate some vessels. I will have to spend a day or two in ICU then hopefully out by Saturday. I am a little nervous but compared to what many of you have been through I cannot complain. God Bless all of you and again, thanks for all the support. Regards, Steve

Comment by dancermom on Wednesday

New symptoms = new phone call to your AVM doc and possibly new scans. It's best to know what is going on, especially if it can be remedied. Keep us posted, Jennifer.

Comment by Jennifer Coners on Wednesday
Thanks! I'm concerned cause the pain is new and bothersome....and after dealing with it for so long it worried me when new pain starts...if it breaks or I leaking I don't know if I would now for sure... And I don't want to loose my leg or worse. And my local er actually told me to drive 4 hour to mayo if I had problems with avm again
Comment by sheila fortin on Wednesday
I have had my avm in my left leg since diagnosed when i was 13. I had many surgeries and embolizations. I too have bee told untreatable currently,as it's now found on my sciatic nerve in my hip.
The doctor will look again in a year, to see if possible to help.
I live with constant pain, but I have been doing somewhat ok knowing how to live with it which means only doing what I can physically handle and meds. But always look at options and and this site is very helpful!
Comment by Jennifer Coners on Wednesday
I figured it would hur bad. However y pain went from a normal 8 out of ten to 10 out of ten quick but it comes in waves ...that part is new...and extremely uncomfortable. Last epot from mayo last year was avm looked better but I ldo found out scelerothrapy all messed pm thigh muscles so bad they as almost non functioning and avm is deep also

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Blog Posts

looks like avm free

Posted by Martin Brooks on July 13, 2014 at 6:46am 7 Comments

So 10 hours surgery on Monday to cut out my avm and I woke with no movement or eye sight problem which is great !!!!!!!!, I did need a "drain" fitted which I think was due to bleeding. Surgery was estimated at 3 to 4 hours and turned out was 10 !…



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