Has anyone had the burn side effect of having a leg avm treated and if so how long was the recovery and did it bleed any. My daughter is going on a month and her burn is showing very little sign of healing and has started back bleeding slightly.
Sorry to hijack the thread but would be interested in this too! Embolization might be an option for me also.
Hi Brandi,
I had alcohol treatment in my left hand last May and I am still not fully healed (I still have very dry skin and mobility issues in one finger).
It is a really long healing process! Just be sure to keep her leg clean and doing any exercises you were recommended.
I while after my surgery I did develop two ulcers on my skin which did cause some bleeding, however my surgeon informed me that this is normal in the healing process.
Hope I was of some help!
Thanks it does help its just hard seeing her in pain all the time and worried cs she is looking at another emobliztion after the burn heals
If she has a compression garment try wearing that - it helped a lot for me.
She doesn’t have s compression garment we have just been wrapping her thigh with a ace bandage
Perfect. I also found ice-packs to be helpful.
After my surgery I took oxycodone, once my prescription was done I was still in a lot of pain so I got a perscription for Tylenol 3s - they help a lot with the pain without making you feel totally out of it.
Would softball shorts work cs it’s her upper thigh?
Yea, it doesn't need to be super tight so those should work
Well her pain management doctor has left her on the oxycodone for the time being. At least till the burn heals and then they are going to try alternative s to narcotics cause of her age
My only advice would be to research the different embolization options and side effects to them
Ulceration can be really difficult to deal with. Some members had success with hyperbaric oxygen therapy (not easy to get covered by insurance), though some didn't. Others have had success with a wound vac. We have a number of members who gave up on ethanol after suffering complications from it. There are some alternatives.
You have an AVM in your left hand?? I have AVMs in my left arm, with the worst one being in my wrist! I haven't had any burning or bleeding complications. I've only had one alcohol treatment, though, and it was just a month ago. I found that it took at least two weeks to gain back all the mobility I have, which isn't full mobility anymore. The pain has come right back, however, and the surgeon is a bit concerned. Glue and onyx hasn't worked, and he was really hoping alcohol would be the answer. In the past year, I haven't gone three months without a surgery. My surgeon was hoping that with this alcohol treatment, I would be able to last until fall. However, it's looking like he's going to have to do another procedure very soon. Please keep me posted on your situation!
If you want to look me up on facebook, search for Jessica Lizotte, Perham Maine
I found you!
I'm sorry to hear it's not working as you expected, but I'm happy to hear from you, it's hard to find people who are dealing with the same thing!
I really want to find something which will reduce the feeling of fullness or pressure within my hand/arm...I don't really know how to describe it. Compression garments are pretty inconvenient and dont really work as well as I'd like.
Living in Canada the only thing any of my doctors have suggested is alcohol treatment.
I am at a loss of words, hun! I feel like I'm reading about myself! I have the same exact sensations, and it always means I need another embolization. I will wake up with the fullness sensation, and can't even function until it calms down. Some days it doesn't go away at all. The way I explain it is it feels like my arm is a water balloon that is about to pop.
I did find a good compression brace, and it's helpful in that it reminds me not to use that arm. I will forget and do something, then will be in pain for days afterwards. Also, when I wear the brace, I find that I have to take it off about an hour or so, and leave it off for a little while.
So far, with my experience, alcohol treatment seems to be the best option.
How long have you been struggling?
With my alcohol treatments, the only side effects I've had have been nerve related.
My hand would turn red, then purple, and it would get all gross looking. Then it would get very cold, then very hot, and it would sweat like crazy.
The surgeon said all of this is nerve damage, and the nerves are traumatized, causing them to get confused and send mixed messages to the brain.
He put me on a strong steroid to try to control it, and it worked, but it also caused my lungs to swell, making me think I was having a stroke. I had to stop the steroids, so the symptoms are coming back.
For pain, I was on narcotics for two years before I decided to get off them. I had no quality of life, I was a zombie, and my tolerance for the medication was so high that I had no relief anymore.
Now, I am on tramadol, lyrica (for nerve damage), and a muscle relaxer, which really helps with the fullness feeling I've been having.
Wow, you all seem, more or less, to be suffering with the after effects of embolization....
thinking maybe it might not be worth it...
Well, I was diagnosed with AVM when I was about 7 years old, after a long 2 years of trying to figure out what was wrong with my hand - it wasn't obvious at the time as my hand was just larger looking and warmer than my right hand. It never caused me any serious issues growing up, other than it was just really uncomfortable.
I still don't experience what I would classify as serious pain regularly. I think this is because I am left handed, so I've had no choice but to always use my arm! I played piano when I was younger and was very active, and still love drawing. So I think that strengthening my hand has been a factor in my lack of pain!
I would however like to not have this constant unpleasant feeling..I like your water balloon analogy, it's really accurate! The healing proccess for me was really awful, my surgery was almost a year ago and I still have very dry skin around the site that is often the cause of pain.
Thank you everyone for the advice wish there was a way to share a pic so you all would see my concern