Vascular Birthmarks Foundation Forum - View Single Post - LOOONG post, and a question about pregnancy
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Old 02-22-2004, 11:36 AM
Gayle
 
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Default Re:LOOONG post, and a question about pregnancy

Hi, I am sorry I haven't read your post earlier. I can tell you how my VM has progressed through the years. And it might help you determine how aggressive you might want to be in your search to help your own situation. I do know that you are the one that has to determine how much you want to help yourself to get the results you want. I have found a lot of mis-informed Dr.'s through the years, the first thing you need to do is get a proper diagnosis. This website is a good starting point for finding one. I went to the best, Dr. Waner, in Little Rock, Arkansas. It took a while to get in but it was well worth it. I knew that he was the foremost expert in this field although there are plenty of good Dr.'s out there, I KNEW he would know what needed to be done. He then told me the best treatments available for my problems. Now as for how this VM has progressed , When I was born it was very small, and only could be seen as a pea size flat vein on my tongue, as I grew older it slowly grew. When I reach puberty it got a little larger although not very noticible I then started seeing blue veins in my cheek, but they could be covered with makeup so it never really bothered me. I had two children and with each birth I noticed a marked period of growth of my VM with each. I went through menopause at 42 and the death of my father which was very stressful for me which both caused more growth. I now had a large area of blue-purple mass on my tongue and on the inside of my cheek, one sinus cavity is also blocked with the VM. I started having symptoms with my heart also, which is like a fluttering or irregular heart-beat. (Common to people with VM's) I had seen many Dr.'s in Tampa, FL throughout the years to no success. They told me the technology was not there to help me. I had a hysterectomy and went on hormone replacement which made my VM's grow again this time a lot larger. (I didn't know what was causing the growth) I finally had to do something when the dentist refused to treat me, so I started looking again for Dr.'s 1 1/2 years ago and found one in Tampa that wanted to strip 3/4's of my tongue off then go on to a series of surgeries to correct the growth but he stressed that it would only come back more aggressive and that it was a very bloody surgery. I found this website just before the scheduled surgery and actually got to talk personally with Linda Rozelle-Shannon who told me just what to do, she is the most instrumental person in persuading me to take my life into my own hands and do what I have to do to get out to see Dr. Waner. She has saved me so much pain and heartache that I can't even begin to tell you. I didn't know where to turn, there was no one who had ever seen anything like this that I could find on my own. I felt different and ashamed of my condition, but not anymore. I know I am not alone, that there are many others out there going through the same thing, some much worse than me. If you indeed have a VM you probably will see growth steadily, especially with hormonal changes such as pregnancy, but with the treatments available it can be managed. The second time I had surgery in Little Rock I met a lady with a problem (her privates) like you and she was having lazer treatments on them the same day I was having surgery. She couldn't say enough good things about Dr. Waner and his nurse, Diane.
If there is anything you would like to ask me please feel free, I can only tell you my experiences, but I hope what I have been through can help.
Gayle
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