Vascular Birthmarks Foundation Forum

Vascular Birthmarks Foundation Forum (http://birthmark.org/board/index.php)
-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   Intramuscular Hemangioma (http://birthmark.org/board/showthread.php?t=3860)

sqgiardino 05-31-2010 09:12 PM

Intramuscular Hemangioma
 
hello, (I'm sorry I wrote so much!)

I am a 25yr. female with an Intramuscular Hemangioma in my leg calf. I am so pleased to finally find some information, as well as, other people with near same disorder as me. This is my story -- I hope that it will help someone one--
when i was about 7ish, my family noticed my left calf was larger then the right calf, with no previous pain, until a young boy my age asked me " if i would like a charlie horse, of course i said yes" and i still remember how much pain that felt in my calf, then pain went away within a few hours. Shortly after that, I was scheduled in for a biopsy right away. As a result from my biopsy, i have had to live with pain in my calf ever since, as well as, scoliosis in my spine, and my achilles tendon has shrunk (with no luck trying to have it extended 3x). I have had too many x-rays, ultrasounds, injections, casts, surgery's, physiotherapy, and have seen too many new specialist. I live day to day pain, and there is nothing that can be removed, or repaired. Every day I have to wrap my leg up with a bandage or eles it swells up, and i wont be able to stand up at all. I have struggled trying to find help and/or compensation, with no luck. I should also mention, my last specialist (who was fantastic!! and was the first dr. who was concerned about my pain!!) from a few months ago, had me get all new x-rays and ultrasounds, and found out that my Hemangioma has taken over about 90% of my calf muscle, and I had a next appointment booked, which was canceled, because he had past away, and no other doctor has been able to replace him. I'm very troubled. My advise to any parent with a child who has a intramuscular Hemangioma, would be to, if at all possible, to stay away from surgery, as it only makes matters worse.

Please feel free to message me if you have any questions or concerns!

missy 05-31-2010 10:28 PM

Hi and welcome!

Technically, you do not have a hemangioma. Hemangioma always involute by the time the child hits puberty. What it sounds like you have is an arteriovenous malformation. The word hemangioma was used incorrectly years ago to describe what you have. But it is an important distinction, because the treatments are entirely different.

For example,
Quote:

My advise to any parent with a child who has a intramuscular Hemangioma, would be to, if at all possible, to stay away from surgery, as it only makes matters worse.
For a parent of a child with hemangioma, surgery is usually a wonderful thing and it almost always resolves the hemangioma. For someone with AVM, surgery is not always the most helpful thing.

You need a specialist, though... you need to see someone who will give you the correct advice and treatment plan. Where are you located?

Missy

sqgiardino 06-01-2010 12:36 AM

hi missy, thanks for the quick response.
I'm really not sure if it is an arteriovenous malformation or not, it could be. all my doctors have just brushed me off and handed me off to someone else, this includes my family doctor so i have no idea, i've had to do most of the research myself. I wish I could find a specialist to help me relieve some of this pain. I live in Ontario Canada

missy 06-01-2010 01:15 AM

Try this:

http://174.120.2.174/board/search.php?searchid=117726

:)

Missy

Hrithik Agarwal 07-18-2012 08:51 AM

[quote=sqgiardino;19485]hello, (I'm sorry I wrote so much!)

I am a 15yr. male with an Intramuscular Hemangioma in my right calf. I am so pleased to finally find some information, as well as, other people with near same disorder as me. This is my story -- I hope that it will help someone one--
when i was about 10, my family noticed my right calf was larger then the left calf, with no previous pain, I live day to day pain, and there is nothing that can be removed, or repaired. Every day I have to wrap my leg up with a bandage or eles it swells up, and i wont be able to stand up at all.

Pl help me, where can i do my treatment.

+91-9163335050.

Hrithik Agarwal 07-18-2012 08:54 AM

[quote=Hrithik Agarwal;25589]
Quote:

Originally Posted by sqgiardino (Post 19485)
hello, (I'm sorry I wrote so much!)

I am a 15yr. male with an Intramuscular Hemangioma in my right calf.

when i was about 10, my family noticed my right calf was larger then the left calf, with no previous pain,but after 15years I live day to day pain, and there is nothing that can be removed, or repaired. Every day I have to wrap my leg up with a bandage or eles it swells up, and i wont be able to stand up at all.

Pl help me, where can i do my treatment.

+91-9163335050.


nickbar 08-01-2012 09:20 PM

WHere are you located?


All times are GMT. The time now is 05:35 AM.

Powered by vBulletin® Version 3.6.5
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.