19 y/o with hemangioma on knee - treatment options? - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Help and Resources for Hemangiomas

Reply
 
Thread Tools Display Modes
  #1  
Old 03-09-2012, 02:44 AM
lumosnox lumosnox is offline
Junior Member
 
Join Date: Mar 2012
Posts: 1
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!)!
Reply With Quote
  #2  
Old 03-10-2012, 12:55 AM
smurph smurph is offline
Senior Member
 
Join Date: Jan 2007
Posts: 402
Default

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!
Shannon
Reply With Quote
  #3  
Old 11-10-2012, 06:58 AM
trevonc91 trevonc91 is offline
Junior Member
 
Join Date: Nov 2012
Posts: 1
Default Help

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 @trevon_c91@yahoo.com. Thanks!
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump