Any blue bleb people out there??
This is my first post ever.
I am a 37 year old woman and I have either blue rubber bleb nevus syndrome or multiple/multifocal venous malformations. (6 of one, half dozen of the other, as my grandma used to say?)
I was misdiagnosed as having HHT a few years ago when my growths started to act up really bad. Then I got a second and third opinion - best trips I ever made.
I have been able to manage insurance appeals, out of network approvals, etc. on my own for several years and I hope I can use my experiences to help others with these rare disorders.
I am getting ready to have my third "real" surgery in five or so years. Had a handful more as a baby and a child. I had a ndyag laser treatment a few months ago, which was a breeze. I had a failed attempt at sclerotherapy last year, too. I guess it works for some people.
My venous malformations are deep and mostly cause pain. I look "typical".
I am wondering if others have as much pain as I do and how they manage it without resorting to narcotics? I try to use lidoderm patches as much as I can. Excercize and physical therapy always just make it worse. I can't take the pain meds because i work full time.
Thanks for listening!
Blue Venus - the bright star
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