We are AVM survivors, here for your support.
For those of us with AVM's outside the brain. Facial, Spinal, Lungs, Arms, Legs...wherever!
Location: medical/symptom type groups
Latest Activity: 19 hours ago
Started by wee724. Last reply by Mira yesterday.
Started by Jaycee. Last reply by takemeasiam yesterday.
Started by dancermom. Last reply by wee724 yesterday.
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.
Members have previously reported severe pain with a ruptured leg avm, Jennifer. Anyone else have input on this?
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!
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.
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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Posted by Martin Brooks on July 13, 2014 at 6:46am
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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