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 in calf -19 y/o (http://birthmark.org/board/showthread.php?t=2664)

JodiS 11-26-2007 08:51 PM

Intramuscular Hemangioma in calf -19 y/o
 
Last week my 19 year old daughter was diagnosed with a rare intramuscular hemangioma in her right calf. From the MRI it appears to be about 4 " long an close to 2" in diameter, with no external discoloration. Her upper calf has swollen to a diameter of 2.5" greater than the unaffected leg. She was initially referered to a vascular surgeon after a trip to the emergency room and is now referred to a another for a proposed angiogram for further diagnostics. Is there information out there or Doctors specializing in this rare intramuscular presentation? We do see one physician listed in Seattle and have heard one in Denver may specialize in intramuscular presentation. We live in Alaska and she in attending college in Washington State.

jburck 01-27-2008 04:19 PM

Intramuscular Hemangioma
 
I am not sure how far you have progressed in finding a doctor. We live in Central Washington and have a 16 year old with a history of hemangioma in the calf. When he was 2 1/2 he had one removed from his calf about the size of a small orange. This was done at Children's Hospital in Seattle by Ernest Conradt in the Orthopedics Oncology department. We learned Friday that a small portion has grown back and is causing pain. He is going to have surgery again. I would be interested in knowing what you have found out so far. If you would like a phone no. for Dr. Conradt please let me know and I can get that for you.

JodiS 02-04-2008 10:21 PM

After an angiogram the diagnosis terminology was corrected to (intramuscular) venous malformation. The vascular specialists (Drs Murray and Zylak) at Inland Vascular in Spokane had already mentioned Dr. Yakes in Denver for treatment after the MRI. We have been in Denver for 3 days and will have treatment tomorrow. From everything I could find on the topic, Dr Yakes seems to have this down to an art form.

We also had an insurance caseworker check for treatment in Seattle, but concured with our referral to Denver.

Step 1 for us is to stop the growth and then see if the area will return to normal size. His treatment methods are said to prevent regrowth, where surgery may not.

Smorgan89 02-21-2008 07:46 AM

Intramuscular Hemangioma
 
I complained about pain in my calf for 8 years. I am here now, where they are telling me I have an intramuscular hemangioma in my right calf. Not only is it inside my leg but inside of my soleus muscle. The doctor I saw refused surgery because of the nerve endings and the fact that they would have to remove part of my muscle. Is it even worth going through embolism? That is what they are sending me to consult about next. I am in pain, is this only me or do other people have problems excersizing and hiking or even walking or working with this problem? I am only 18yrs old. I did come across a few cases that stated intramuscular hemangioma's can be caused by trauma. This could be the case with me since I also have a non-ossifying fibroma just above my knee in the back where I have had trauma. If anyone out there has info on this I really need a support buddy or something. This thing is not exactly flat but only a little raised.. but is big in diameter. Doctors told me it was "very large". I'd say about the size of a orange or apple from what the doctor showed me.

JodiS 02-24-2008 08:59 PM

Seek out an Expert for Treatment
 
I would recommend seeking out the opinion of an expert such as Dr. Yakes in Denver or Dr. Fishman in Boston, depending on where you live. We live in the West so were referred to Dr. Yakes. He reviewed our records (MRI and Angioplasty) and indicated the Intramuscular Venous Malformation IMVM (the modern and more proper term for what had been referred to as Intramuscular Hemangioma in the past) could be treated. These can continue to grow so we chose to seek treatment ASAP. We are going for treatment #2 in March. Dr. Yakes sent us quite a bit of literature on vascular malformations and treatments before we even scheduled an appointment to help us make an informed decision. Searching different combinations of terms and physicians names on the internet, and reading the opinions on the discussion boards was also a big help.

sqgiardino 05-31-2010 08:02 PM

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. After my biopsy, i have had to live with pain in my calf ever since, as well as, 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.

sqgiardino 05-31-2010 08:03 PM

btw-- I live in Canada

dparkhurst 11-02-2010 02:46 AM

Intamuscular Hemangioma
 
I am a 30 year old male living in Missouri. I have a hemangioma that started in the bottom of my foot and has spread all over my foot and up all through my leg all the way to my hip area. Let's just say I am not winning any Mr. Legs contests, nor do I wear sandals! There is a bunch of pain with it. I have had several operations removing it, destroying it, trying to kill the veins feeding it, varicose vain surgery, along with tons of MRI's and other tests. A Doctor at the Mayo clinic told me that he could remove it again but it would grow back. The operations have had very minimal success in helping the pain as the scar tissue and operations cause enough pain by the time it is over the hemangioma is back. It is pretty crazy I run 4 miles a day and am very active although it does not feel good. I don't have a solution to it but can probably answer some questions on procedures and the success I experienced with them and would welcome any help as well. Who knows maybe someday I can wear flip flops!

lyss2176 11-09-2010 06:46 PM

hemangioma in foot
 
My 13 year old daughter had a biopsy of a growth on her foot which began moving up her ankle...all in about 3 months. We have no idea what to do now. They say absolutely no surgery or it will spread more...so what do they expect us to do. She is a soccer player

nickbar 11-12-2010 05:52 AM

I highly recommend getting another opinion or two. I would highly recommend contacting Dr. Robert Rosen in NYC (you can email him thru the site on the ask the expert). He has extensive knowledge in malformations and treating them successfully.


All times are GMT. The time now is 11:16 PM.

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