17 and new to VBF, clueless. - Vascular Birthmarks Foundation Forum
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Old 04-17-2004, 11:11 PM
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Default 17 and new to VBF, clueless.

hey everyone,
I'm 17, and I've been struggling w/ some sort of vascular problem deeply imbedded in my left thigh... Doctors have been reluctant to talk about it, and even reluctant to treat me. I know that the reason why most people have procedures done because of a vascular disease is cosmetic, but my lump causes a lot of pain.
(My problem is not easily visible and I was told by a Dr. at Children's Medical Center in Dallas, TX some time ago that I was not a major priority because the Dr. had patients that were basically more important than I, because they had visably noticable facial disfigurements, and that she basically didn't understand why I was seeing her.)
That was when I was eleven. Ever since then, I've been reluctant to have it treated because I felt that seeking medical attention was being rediculous, not to mention the cost to my parents. However, I've been living with this constant pain whenever I move my leg for years, and sometimes I even wake up in the middle of the night with a stabbing continual pain. Three of the four muscles that make up the "quads" in my thigh have atrophied to the point where even walking is difficult. I know I'm lucky that it's not malignant, but the pain is still very aggrivating.
As a teenager, I feel that there are more important things in my life to worry about. Normal things like getting into a good college and finding a date to prom, but I can't even function like a normal person anymore, so I need help in getting my problem taken care of.
I'm pleased to see that there is a site for people w/ problems like me... but as I said, I'm not even sure what EXACTLY I have, or where to begin to find answers on treatment.
please help!
thank you.
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Old 04-17-2004, 11:56 PM
eprmo eprmo is offline
Senior Member
Join Date: Dec 2003
Posts: 133
Default Re:17 and new to VBF, clueless.

you should not feel so uncomfortable about seeking treatment and wanting to fell and get better......I commend you for "taking the bull by the horn"..

Do you parents know about the pain?? If they don't ,explain it to them,,,they need to find treatment for you,,,there are doctros who will not .."""excuse youy pain,or you"""",,That one you went to,,was WRONG!!!! Don't give up,,,you have a whole life-time a head of you,,and you can be enjoying life moreand you will.....

I know one doctor who will help you find answers...His name is Dr. Milton Waner,,your parents or you can call him, and get an opinion what to do,, His number is:

BI Center Indovascular Surgery/Singer Division 170 E. End Ave. @ 87th St. New York, NY 10128 212-870-9336 or 212-870-9571

Ask for his nurse JANNA...she will tell you what to do next....

OR::: check out the names of doctors on this PHYSICIAN LIST,,closer to where you live..

Its time for you feel good, you made the first right step by coming here,,,,now it's time for STEP #2


Elissa Rifkin
VBF Developmental Specialist
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Old 04-17-2004, 11:57 PM
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Default Re:17 and new to VBF, clueless.

I'm sorry to hear that you are in so much pain. Who told you that your problem was vascular? I would go back to that doctor and demand they do something to properly diagnose the growth and to something to treat it. If that doctor doesn't do anything, keep going to different doctors in your area until you get some help. You can start by looking at FIND A PHYSICIAN ,located on the left side of this board. Don't let the doctor you saw when you were eleven discourage you. As far as I'm conserned, pain takes priority to anything cosmetic!
Be firm and you will see results.
Good luck and keep us posted.
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Old 06-10-2004, 11:06 PM
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Default Re:17 and new to VBF, clueless.

HEllo, have you found help yet? If not, I can help u

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Old 06-11-2004, 01:06 AM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054
Default Re:17 and new to VBF, clueless.

Pain can be associated with malformations... there are things that can help!!!

You are in Tx. Contact Dr. Burns
his info is above.

Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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Old 06-12-2004, 05:37 PM
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Default Re:17 and new to VBF, clueless.

I've seen Dr. Burns. He was no help at all.

Thanks though.
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Old 06-13-2004, 05:56 AM
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Default Re:17 and new to VBF, clueless.

Hi Catherine,

Have you seen an orthopedist? Have you had an MRI?

Those docs you mentioned in your first message make me really mad! > Your problem is a very important one: pain has to treated, don't give up looking for the right diagnosis and treatment.

Lise (arteriovenous malformation of the lip)
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Old 01-24-2005, 06:49 AM
hankbartenbach hankbartenbach is offline
Senior Member
Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re: 17 and new to VBF, clueless.

Hi Catherine,

I was just wondering if you had any updates on yourself with your Vascular problem.

I hope you are doing well.

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Old 01-26-2005, 05:08 PM
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Default Re: 17 and new to VBF, clueless.

Sorry that you have been unsuccessful in finding a treatment.
Most doctors are not really understanding of vascular birthmarks or hemangiomas.* I have Capillary Vascular Malformation on my entire right leg up to my middle back.* I noticed that in the winter (I live in the Northeast and it get cold) my leg is in a lot more pain, sometimes I can't even walk.* But I noticed since I have been using surgical stockings it feels a lot better.* Maybe that could help you even though it's just in that one area.* I think though that doctors should have gave you a diagnosis a long time ago.
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