Intramuscular Hemangioma in calf -19 y/o - Page 3 - Vascular Birthmarks Foundation Forum
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Old 01-19-2014, 04:05 PM
rc_roy rc_roy is offline
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Join Date: Jan 2014
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Default Intramuscular hemangioma in calf!

I am so glad I found this! When I was 19 years old I was diagnosed with intramuscular hemangioma in my right calf..At first it wasn't too bad but I still had to wear compressed socks everyday. I am now 26 and the past few months the pain has been unbearable! This is the second time that it rips and bleeds, my leg has been going numbs since the bleeding is putting pressure on a nerve. I have been waiting for 5 years to try embolization (2 years for a consult, 3 years for the actual appointment) It doesn't look like it's gonna be anytime soon..Now I went to see this other specialist and he wants to do the surgery to remove it, and I was wondering if anyone has been through it? If so, how bad is the surgery? Also the 2 first specialist that I've seen said they didn't want to operate because it was too dangerous, but now this 3rd one said he has done it plenty of times just not in the leg..Oh and one last thing, other than wearing the compressed stockings, is there anything else that can help with the pain???
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Old 01-19-2014, 04:06 PM
rc_roy rc_roy is offline
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Also, I do realize this post is old, but I figured I'll give it a try anyway!
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Old 01-20-2014, 04:36 AM
smurph smurph is offline
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Join Date: Jan 2007
Posts: 459

Hi there!
I would suggest you email Dr. Robert Rosen. You can go to the "Ask the Expert" page here on this website. Perhaps you can send a photo too. He is an expert in the field of vascular lesions of the arms and legs and he may be able to give you some insight and suggestions. What you have does not really sound like an infantile hemangioma because hemangiomas grown quickly in the first year after birth and then involute slowly for sometime up to 10 years. What you are describing is different, and I would get another opinion especially since you have been getting conflicting opinions already. Are you in the U.S?
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Old 05-17-2014, 09:00 PM
dgarner dgarner is offline
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Join Date: May 2014
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Default Similar Experience

I suggest trying aspirin rather than other over-the-counter pain meds.

I am a 35 year old female and have lived with a large Cavernous Hemangioma in my left lower leg for as long as I can remember. I had surgery in 1980 when I was 2 to remove what the doctors thought was a cyst. Low and behold they were rather surprised to find a cavernous hemangioma. They thought they removed all of it at that time. However, my leg never felt "right". I was a competitive swimmer and rarely kicked because my leg just felt weird, but I didn't know why. My leg always bothers me with there is a large change in the weather or when I have hit it. Sometimes it bothers me for no explainable reason. Unlike many of you my left calf is smaller than the right calf. This is because my muscle is substantially smaller in my hemangioma leg and the hemangioma is located inner most parts of my leg. The strength differences in my legs has led to lower back issues. The hemangioma runs from my ankle to about 2 inches below my knee. I talked to my parents and told them something wasn't right. We ended up being referred to experts at Duke University when I was in high school. He, as well as my referring physician, both felt like surgery was not an option because they would have to remove a large portion of my muscle and I would loose mobility rather than gain it. They suggested a check up every 6 months to monitor growth. I asked what they would do if it was growing, they said nothing. At that point I stopped seeing a doctor about my condition.

Fast forward a 2 decades and I found myself pregnant with our son. I knew I was pregnant before any test could tell me because my leg hurt so bad I couldn't even walk. My OB/GYN explained my leg condition to me better than any other doctor ever has. He was a teaching physician and consulted with individuals at the UVA medical school. Essentially he placed me on blood thinners throughout my pregnancy, which helped. He also kept me on an Aspirin a day post pardon. Since then I have realized that baby Aspirin helps my leg much better than any other pain killer because it slightly thins my blood allow the blood to move more freely through my hemangioma. Obviously, you should talk to your doctor before being placed on an Aspirin regiment because there are serious side-effects, but I just wanted to offer my experience to see if it could help others.

I need to see a doctor again, but live in a small town in SW Virginia and am on an HMO plan leaving me limited options. Good-luck to everyone else. I know I am late to the board so I don't know if anyone else will even see this.
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