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-   -   newly diagnosed @ 36 with VM in arm (http://birthmark.org/board/showthread.php?t=4084)

christen 09-14-2010 12:52 AM

newly diagnosed @ 36 with VM in arm
 
I have recently been diagnosed with a vascular malformation in my tricep. I have finally been refered to an interventional radiologist. My doctor seems to think it is not typical to have as much pain as I am having with this lesion. It stretches from my skin and wraps around the bone in my tricep. I started having trouble with this arm when I was about 16. I had another bad episode when I was 21 and then the last 2 years it has caused me alot of trouble. July 29 I had a surgical biopsy by a orthopedic oncologist. Over the years I have been misdiagnosed with every thing from tendonitis, bursitis, torn tricep. My interventional radiologist is a pediatric guy. He says.... " well kids don't usually have this much pain." He wants to do scelerotherapy but says he doesn't want to do anything until the pain from the sugery subsides and I keep trying to exlain that it hurt the same before surgery. Does anyone else have crazy pain with there vascular malformation?
I am a dog groomer and I have had so much pain I could not even finish one dog. 2 weeks ago I was fired and replaced at my job. It has been terrible. I have lost my insurance because it has taken so long for them to diagnose me properly. I have a workers comp claim on my arm due to exacerbation. Has anyone ever had a workers comp claim on their VM?

kaykay 09-14-2010 01:57 AM

damnnnn sorry to hear this. i hope some one can chip in soon. try emailing the insurance expert about the workers comp claim.

missy 09-14-2010 11:08 AM

The insurance expert can be found at

http://birthmark.org/experts.php

Good luck and let us know what happens!!

Missy

bluevenusbrightstar 10-13-2011 12:23 PM

I am new to this forum and just saw your post.
I can't give you advice, but I can share my experience with a VM in my tricep.
I am 37 now and had a VM surgically removed from my tricep by an ortho oncologist at age 31. (I've had several of them in various locations) It took over a year for this diagnosis. First they thought it was tendinitis, carpal tunnel, etc. I had to do physical therapy, which only made it worse. Ultimately, I had pain shooting down to my hand so bad that I couldn't even use the mouse for the computer. They only found it because I was in physical therapy one day and the darn little golf ball popped out really big and I hollered to the folks to come look at it. It never popped out for the doctors because you know how cold their offices are. So then the docs finally ordered the MRI and saw what i knew was in there.
I had to take several weeks off work BEFORE the surgery because i just couldn't do anything anymore. I would just sit at my desk and cry. The surgeon warned me that the lesion was growing against the medial nerve and that there was a risk to the use of my hand. I felt that I didnt have a choice because I was in so much pain. I knew he was a good surgeon so I took the risk and I got lucky. On the way home from the hospital my hand already felt better. My handwriting stinks, but i guess it always did! Thank goodness I can type.
I now have a 3 inch scar that starts at the tip of my elbow and goes up my outside upper arm. My husband likes to tell people that I used to play ball and that I had "Tommy John surgery".
All jokes aside, I am concerned about anybody losing their job because of a medical condition. That just doesn't sound right.

bluevenusbrightstar 10-13-2011 12:48 PM

one more thing... this is just MY OWN PERSONAL EXPERIENCE but sclerotherapy has not worked for me. I know it is all the rage these days, but i tried it once and it was a total waste of time. Your docs have to know how your lesions "communicate" on the inside. If they are a tangled mess of micro-chambers or clogged up from years of clotting and fibrosis, then sclerotherapy might not work. That's why I just get my stuff cut out in one quick and easy trip to the surgical oncologist. It's not as fancy and high tech as intervential radiology, but it works for me.
Everybody is different. Each of us with VM's are, by definition, anomalies. One size does not fit all, so one treatment cannot be appropriate for everyone.
I encourage you to explore whatever options are available. Take everything with a grain of salt.


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