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-   -   Recent VM Diag. Need Info Please (http://birthmark.org/board/showthread.php?t=2554)

sarcher767 09-19-2007 06:37 PM

Recent VM Diag. Need Info Please
 
Hi my name is Sandra and my youngest (9) son was recently diadnosed with a deep infiltrating Venous Malformation for of lower left leg. I have spent several hours over the last few weeks searching the internet trying to find information so I could understand and help him learn to live with his condition and all I have learned is that there is very little info out there. I did find a book on vascular birthmarks it is on order. Does anyone know where I can find more info on this type of VM?

Thanks for your help.
Sandra

missy 09-20-2007 12:20 AM

Your best bet might be to go ask an expert:

http://birthmark.org/experts.php

Have they recommended a course of treatment?

Missy

sarcher767 09-20-2007 01:14 PM

I e-mailed them a couple of weeks ago and I am still waiting for a reply. Right now it is a very consertive (sp) treatment, he has a compression sock he wears during the day. I have noticed that when he dosen't wear it, like on the weekends (he plays outside barefoot) his foot will have a sight purple tint to it and he says that it hurts really bad. I have tried just wapping his leg with a ace bandage but then his foot will really turn purple. He told me after he got his sock that he didn't realize how bad his leg really felt because he was just so used to it. Anyway, I just really want/need more info I feel like I am walking around in the dark.

Sandra

Lisa_99 09-23-2007 10:31 PM

HI Sandra --
I sent you a message thru the site --
write me if you can -- I will be glad to get you to few websites for support.

Lisa
Mom of 18 yr old w/ KT syndrome / vascular issues left leg to toes
Mississippi

Nicolefila 09-25-2007 04:22 AM

the best place I have found information wide is the internet and I have had a venous malformation since I was 7 and I am now 21. I just found this website about 3 days ago so your already a step (or two or three or seventeen) ahead of me. This is an amazing website and whoever creayed it should be given an oscar on the red carpet or something. So you'rr in the right place. If you have any other questions don't hesitate to ask.

crazymom 06-03-2008 12:23 PM

My 15 year old was diagnosed with a VM about 4 years ago. The doctors discovered it after she began activity after fracturing the growth plate in her left heel. Her calf muscle became larger than the right one and she was in so much pain in the morning that she couldn't walk. The pain would eventually subside, but it was very frustrating. I am sure all of us can relate with the frustration of proper diagnosis. It took the doctors nearly 6 weeks to discover what it was. Finally, it was a relief to finally work with a team of doctors who knew what they were dealing with and could offer some advice for symptom relief.

She began sleeping with a compression stocking and with her leg slightly elevated - this greatly relieved the pain in the morning because it reduced the clotting in the VM. She also began low dose aspirin therapy (81mg) and that helped as well. She took tylenol for the occasional pain she felt - which would usually happen when she did an excess of jumping (she is a competitive gymnast). The doctors monitored it by doing Ultrasounds and MRIs and didn't want to intervene until it became symptomatic to the point of limiting her activities. It has not changed size during this time, which I guess seems to be a good thing?

It did get to that point this past year and she had sclerotherapy done almost two weeks ago. She is still recovering from the procedure, so we won't know how successful it was.

If he feels relief while wearing the compression sock, then he should try to wear it all the time. I know it's hard to get a child to follow directions, but it will help. He could also try sleeping with his leg/foot slightly elevated. I would speak to your doctor about the aspirin because of his age. This may buy you some time and him some relief from pain.

Good luck with everything.....


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