Invisible AVM in Leg - Vascular Birthmarks Foundation Forum
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  #1  
Old 01-03-2011, 07:16 AM
heatherfife heatherfife is offline
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Post Invisible AVM in Leg

My otherwise healthy eight year-old daughter suddenly developed a contracture in her right leg. The only sypmtom she had was that she could not put her heel flat on the floor and limped terribly when she walked. There was no swelling or discoloration on any part of her leg. The pediatrician and the orthopedist were at a loss, neither had any idea what was causing this. I did research online and by searching for "unilateral toe walking" found a paper that was written about a 21 year-old woman with these same sypmtoms. She had been diagnosed with a hemangioma (now we know that hemangioma involute and with her advanced age, it was technically an AVM or malformation). After taking this information to her doctor, I was able to get an MRI and after meeting with specialists, a diagnosis of AVM or COLA (congenital lipovascular anomaly, which includes fatty tissue).

I will post more once we get our treatment plan and even more once we get the treatments. At this point I understand that if it is an AVM, then sclerotherapy is an option...if it is a COLA, then sclerotherapy or embolization is not recommended and can worsten the problem.

I just wanted to put this information out there in case someone else knows of something like this happening to someone.
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  #2  
Old 01-03-2011, 10:30 AM
missy missy is offline
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Hi and welcome!

Where are you located? When is your next appointment and do you expect to get a treatment plan?

Missy
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  #3  
Old 01-03-2011, 04:55 PM
jes jes is offline
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Hi Heather, please post more information online. I also just start the AVM journey for my son. Since he is only 4 years old, and no big symptom except for skin discoloration, doctors don't want to start any treatment yet. But, I'm very worried. Best wishes for our kids. Jessica
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  #4  
Old 01-07-2011, 07:54 PM
jfaithb jfaithb is offline
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Default I have a COLA!

Recently my malformation was re-diagnosed as a COLA. Dr. Alomari at Children's Hospital in Boston did a speech on this not too long ago. I have different symptoms than your daughter, probably due to my age. When I was twelve I had no pain but felt a little lump in the back of my calf. Now I am 28 and trying to control pain. Because this subsection of VMs is pretty much brand new I haven't been able to find information on the web. Have your daughter's doctors directed you to any useful information? If so, would you mind sending me an email with links or reports to review?

The doctors in Boston have been very good to me and I recommend the Vascular Anomaly Clinic there whole heartedly. I've been to Mayo Clinic in Rochester and Dr. Rosen at Lennox Hill Hospital in New York but Children's in Boston have been the only ones to give me some relief. They are also amazing at giving my family and I information and support. If you have any questions please feel free to contact me. jfaithb@gmail.com. I wish your daughter wellness!
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