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lumosnox 03-09-2012 03:44 AM

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!)! :)

smurph 03-10-2012 01:55 AM

Hi! I'm not a doctor but I don't think you have a hemangioma. I think it's some other kind of vascular malformation. I would definitely go see a specialist at that clinic for sure. I'm not sure about the insurance question but you could probably contact Basia Joyce...she is the insurance expert on this site....look on the resources page. She might be able to help you.

Good luck!

trevonc91 11-10-2012 07:58 AM

Did you ever find treatment for this?!? I have the same problem. The worst part is it is prevenring me from leaving for the Marine Corp. My doctor tried injecting achohol into the hemangioma but it didnt work. I am thinking about trying a diffrent doctor. PLEASE reply if tou know if any effective treatment. My tumir is about the size of a football and us deep. From my upper thigh to my knee. You can only imagine the pain it causes. Yiu can also email me Thanks!

Ericabeth 02-05-2015 03:00 AM

Hi..... I have the same thing with my knee. I've had it since I was 7 and now 36. It causes me so much pain that I can't even touch it. I can't even bend my knee. My dr wants to operate but I'm nervous. I had a biopsy so I'm sure it's a hemangenoma. What did u end up doing?

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