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-   -   New member: VM & Sclerotherapy? (http://birthmark.org/board/showthread.php?t=3970)

Shanna 07-27-2010 03:14 AM

New member: VM & Sclerotherapy?
 
I was born with VM in my left hand and arm, now 23 yrs later after MRIs, an angiogram and several operations... I am still experiencing much pain and swelling.
I have been hearing of late all the praises of the sclerotherapy procedure....
Can anyone with VM who has been treated with Sctherapy, tell me what it was like, who did it, how they are faring now... and anything else!

Many thanks!

missy 07-27-2010 01:32 PM

I know there are a couple of people on this forum with experience in hand or arm AVM's, but they don't post regularly. They drop by every couple of weeks instead. So you might have to wait for a good response.

Try writing to one of our experts:

http://birthmark.org/experts.php

Missy

Shanna 07-27-2010 05:13 PM

I wrote to Dr. Rosen yesterday... still awaiting his reply. :0)

missy 07-28-2010 12:13 AM

LOL Dr Rosen is a really great doctor and his turnaround time is about two days. You should hear from him soon.

Missy

daisy08 03-04-2011 07:28 PM

Sclerotherapy Treatment
 
I have received two sclerotherapy treatments for pain/discomfort in my left shoulder. It took two procedures for all my symptoms to stop but I feel much better now! I would def. suggest sclerotherapy for VM treatment!

rightarmavm 04-04-2011 06:36 PM

Sclerotherapy treatment
 
I'm a 36 yr old male with an AVM in my hand up to my elbow with one digit involved.

I've had two of these treatments on my right hand/arm. There are pros and cons as with any procedure/surgery. The pros: I noticed a difference in the size of my AVM, i.e. it was smaller post sclerotherapy (after the innitial swelling went down which lasted around a month) and thus the pain was reduced. The downside was the intense pain - Like I've never experienced before, directly following my procedure. Keep in mind, there are at least two different types of solutions they can use, for my procedure they used mainly alcohol/ethonal - It felt like fire in my arm. I actually went back to the hospital that did my procedure complaining about the pain, that was one week after the procedure. They checked for infection (there was none) and upped my pain meds.

Now here's the thing, last month I went with the surgical route to remove to thrombosed veins in my hand/AVM that was causing me pain and mobility problems - It's common to have thrombosed veins post sclerotherapy. At this point (3-weeks after my surgery) I realize that I may have made matters worse for myself by having surgery, so now sclerotherapy looks like a smarter choice. I was always warned about surgically removing any part of my AVM as it involved not only veins, but also muscle, bone and essentially everything else in my arm. And realistically, removing any part of the AVM would likely only be temporary as it will likely return, possibly worse.

I'm trying to use my compression sleeve as much as possible which helps manage swelling - Less swelling = less pain. I keep hoping that bionic arms are right around the corner :-)


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