I am 34 years old and have an extensive VM in my left thigh. I've had 3 sclerotherapy procedures in the last year with a lot of complications. I wasn't able to walk last summer without crutches for 3 1/2 months. I've also had symptoms of Reflex Sympathetic Dystrophy (RSD), where the pain goes down my leg into my foot and my foot turns cold/numb. Has anyone else had RSD symptoms associated with a VM? I've seen a neurologist and have had 3 nerve blocks that didn't really help. All my motor nerves test fine. I've had the 3 sclerotherapy procedures in Charlotte, NC with a dr that is registered on this site. He can't explain my RSD symptoms. He suggested I e-mail Dr. Konez on this site for his opinion, but I do not get a confirmation e-mail or a response. I just tried to post again. I am wondering if there is a clinic that I need to go to that can treat these multiple symptoms I have. I am not sure that the sclerotherapy is making me better or worse. I have been in constant pain since July 2005 (never had any symptoms prior to that, although I was very active). Any suggestions would be greatly appreciated.
How long ago did you write to Dr. Konez? I can check up on it.
Many times, though, services like AOL, Yahoo, or Hotmail block what they see as automatic submissions from websites and put our confirmation notices in their "trash" (not even the SPAM folder... they just delete it altogether!!).
I first e-mailed Dr. Konez on 11/1/06, I did get a return to sender error (to my yahoo e-mail) so then I used the Contact VBF page and re-sent the e-mail and never heard anything. I just sent one today but have not gotten a confirmation yet that it was received.
An international charitable
organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate medical professionals for evaluation and/or treatment,
provides informational resources as well as sponsors physician education, mobilizes medical missions trips, and supports research and programs that promote acceptance
for individuals with birthmarks.
Here you will find information and resources for patients and families affected by hemangioma, port wine stain,
arteriovenous malformation, capillary malformation, lymphatic malformation, Sturge Weber syndrome, Klippel-Trenaunay syndrome, and any other type of vascular birthmark
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