Extremity and Other Non-Brain AVMs

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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: 532
Latest Activity: 19 hours ago

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Comment by dancermom 19 hours ago

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 19 hours ago
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 19 hours ago
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 19 hours ago
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

Moderator
Comment by dancermom 20 hours ago

Members have previously reported severe pain with a ruptured leg avm, Jennifer. Anyone else have input on this?

Comment by Jennifer Coners 20 hours ago
Wondering how can you tell if a leg avm is leaking?
Comment by Steve on July 6, 2014 at 9:48pm

Hi Julie, welcome to the site; you will find nothing but friends on here that readily share the expertise and stories to help you cope and to become much better informed. I do know what you mean about untreatable though, as I now have two AVMs, one on the left and one on the right side of my face. I am fixing to have a embolization of vessels involved with the one on the left, but the one n the right I have been told is pretty much untreatable. Likewise, both are high flow which limits the type agents that can be used for embolization. I am glad you don't have much pain, unfortunately I do along with constant pulsations, throbbing and the sound of my heartbeat everyday in my right ear. Anyway, I have had one AVM since birth so my entire life have lived with it, for many years I did quite well, with no pain, just the daily reminder of it due to the visible scars and numbness where I underwent a major resection as a teenager along with several port wine stains on my face. Anyway, this is a great site with a lot of people who are very versed in dealing with AVMs and I couldn't agree more with Paul T. who suggested getting different opinions if that is an option or possibility. Again welcome to the site!

Comment by Julie on July 5, 2014 at 5:55am

Thanks Paul. I have an MRI again next week and will be armed with lots of new info from this forum to help explore all of the options - doing none being a good one too if the odds are better and the pain minimal. Best wishes to your family.

Comment by Paul T on July 5, 2014 at 2:34am
Hi Julie,
Welcome the group. One thing to feel good about is that extremity avms are far less risky than a cerebral a avms(in the vast majority of cases).
Our son has a very extensive avm from his lower back through left side and wrapping his spinal column. Even with this he is active and fun loving. His is very extensive and currently untreatable.

Given the size of your avm (not extreme) - I'm a little surprised they think it is untreatable. I'd get a second and third opinion. Note avms are not straightforward, they're erratic like a teenager. They may be sweet/easy going or could be a real pain. The real challenge with avms , in my view, is whether we should treat at all. Sometimes doing nothing is the best treatment. With yours since it is in growth mode I'd get that second opinion on treatment.
Comment by Julie on July 4, 2014 at 11:45pm

Hi. Introducing myself as a new member from the UK. Have a large high flow Avm on my sacrium / lower back . Emerged during my first pregnancy around 15 years ago. I am lucky that it has been pain free for the most part , but has got much bigger over the years and now more concerning. Been told it is too high flow to treat .I have had many MRIs over the years. I have another next week to then consider my options. As it is inoperable and v high flow what would they be? I have been told little about the risks of my condition to my general long term health. Do I need to do take precautions with my lifestyle or things to look out for. I am not sure if I have ever had a bleed so have no idea what to look out for or how to respond. I Know I have been lucky so far having read the many posts on this site. What can I do to help myself stay healthy? Any advice welcome.Be interested to hear from other uk members too. Best wishes all.

 
 
 

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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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