19 y/o with hemangioma on knee - treatment options? - Vascular Birthmarks Foundation Forum
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Old 03-09-2012, 03:44 AM
lumosnox lumosnox is offline
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Join Date: Mar 2012
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Default 19 y/o with hemangioma on knee - treatment options?

Hi! So I really don't know where else to ask this, and I feel like I have scoured the internet.
I'm 19. When I was 5 I had a hemangioma removed from my knee surgically. It was apparently intertwined with my lymph tissue and obviously, caused a lot of bleeding. It's hard to pinpoint, but I think I was between 9 and 13 when another hemangioma popped up on my knee and started growing. Both were (and are) deep hemangiomas (you can't see any discoloration, just a bump). It bothers me A LOT. It's so painful to hit/bump. Something as simple as walking with my lanyard of keys on my elbow and having my keys hit my knee causes severe pain. I can't stand for very long periods without a lot of pain and swelling - it gets so painful and swollen I can't bend my leg but maybe 45 degrees!
My primary care doctor back home does not want me to have surgery again because the last one bled so much. I had schlerotherapy done (3 sessions of like 20 needle pokes each!) and that did a whole lot of NOTHING.
So I have a few questions:
1. Do you guys know of any other treatment options? I know I'm kind of a really weird case because hemangiomas are supposed to involute...nope, not here.
2. I have never seen an actual vascular doctor about this hemangioma. My mom just never took me. So I guess her and my primary doctor just assume it's a hemangioma because it was when I was 5? Anyway, should I try to see a doctor here at college? I know the Children's hospital has a Hemangioma/Vascular Malformations clinic, but I have to see a primary doctor here for a referral first. And I would have to go to a Children's hospital at 19..ha.
3. Insurance question: My insurance is for NY. Will they let me see a primary doctor and/or specialist in Ohio, where I go to school?

I'm sorry this is so long! Thank you to anyone who reads it (or replies!)!
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