5 yr old son Venous Malformation-Amputation - Vascular Birthmarks Foundation Forum
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Old 01-11-2008, 05:39 AM
Jani2424 Jani2424 is offline
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Join Date: Jan 2008
Posts: 1
Unhappy 5 yr old son Venous Malformation-Amputation

Hi Everyone,
I am new to this forum. My son is 5 years old and has been a patient at Texas Children's Hospital in Houston,Tx for the past 3 years. He has a venous malformation in his right knee area which extends up into the thigh to below his knee. He has had 6 treatments of scelerotherapy. I met with a team of specialists on Monday to review his case because the scelero is not working. His mass is getting larger and he is in much more pain. So, at the meeting on Monday that his only option now is amputation of his right leg. I was shocked, you could imagine. Has anyone ever heard of them wanting to amputate because of a venous malformation?...I have contacted Boston's Children's Hospital to make a appt for a 2nd opinion. Do any of you guys have any other suggestions?
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Old 01-12-2008, 12:45 AM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054

Getting many opinions is helpful. You want options. If you need help seeking those opinions let me know.

Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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Old 01-13-2008, 10:10 PM
Scott C. Scott C. is offline
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Join Date: Dec 2007
Location: Vermont, U.S.
Posts: 8

Definatly go to Boston's Childrens Hospital. They see many cases of vascular malformations, worldwide. It may take some time until your appontment, but will be worth the wait. Seek other opinions as well, however, don't be surprised if you receive conflicting opinions.

Best wish's for a positive outcome,


Last edited by Scott C. : 01-13-2008 at 10:14 PM.
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Old 02-01-2008, 02:49 PM
KristieinStMarysGA KristieinStMarysGA is offline
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Join Date: Feb 2005
Location: St Marys GA
Posts: 130


I'm 29 years old with a VM throughout my left elbow/forearm, when I was about 10 or 11 doctors told my parents that my arm should be amputated (I wasn't diagnosed with a VM at that point) my parents REFUSED, and I couldn't thank them enough for it!

I know it's a very frustrating thing to deal with and at times a very painful thing to have to deal with. My advice is get another opinon! I would recommend Dr.Wayne Yakes (my doctor) he is in Colorado (I'm not!) but he is fantastic. I believe his contact information is on this site. You can send him a CD of any MRI's or other tests that your son has had and he will let you know if he can treat it.

I beg you that you don't let them amputate your son's leg until you have checked every resource possible.

If you have any questions don't hesitate to ask me.

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Old 02-04-2008, 11:01 PM
JodiS JodiS is offline
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Join Date: Nov 2007
Posts: 7
Default Try Dr Yakes in Denver

Try Dr Yakes in Denver at Swedish Medical Center. We are in Denver right now for the first procedure tomorrow on my daughters calf. She has an intramuscular VM that has grown significantly in the 6 months. It has probably been growing about 4 years, but she has had no real pain or discoloration.

He is the last resort for some patients according to the blogs we've read. We were very fortunate that the vascular surgeon my daughter was referred to from the ER after rapid swelling in October had heard of Dr Yakes and this rare condition. The staff said that was not usual; patients have generally been treated unsuccessfully,some for years, before they come to Colorado. We read everything we could find before coming and found few that did not have positive outcomes and give Dr Yakes and staff glowing reviews.

He gave us no promises. Step 1 is to stop the growth and wait to see if the muscle returns to normal size. You should call the office tomorrow and try to save the limb.
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Old 06-03-2008, 03:01 AM
crazymom crazymom is offline
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Join Date: Jun 2008
Location: Near Boston
Posts: 2

I have a 15 year old daughter with a VM in her left calf muscle. She just had sclerotherapy at Boston Children's Hospital. The doctor is confident that he was able to sclerose everything; however, she is still experiencing pain in the morning. Does anyone know if this is becuase it has formed new paths and is clotting again? She says it is feeling less tight, but still hurts from time to time.

Anyone with any experience with this procedure? He also said she has a lymphatic malformation behind the muscle as well, which is too small to treat.
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Old 06-03-2008, 03:20 AM
JodiS JodiS is offline
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Join Date: Nov 2007
Posts: 7
Default VM in Calf treatments

My 19 y/o is preparing for her 4th treatment in Denver for her intramuscular VM in her right calf. She was uncomfortable after the first procedure and had a hard time walking the first few days after. I think a lot of it was from the swelling and an Arteriogram. She had a lot of swelling about day 3, but just kept her leg elevated and it subsided. She took some 1/2 doses of a pain killer for a few days and anti-inflammatories for a week.

She had much less discomfort after treatments 2 and 3 and took no pain medicine at all. She is swollen and a little tender about a week afterwards, but nothing to slow her down. Dr. Yakes said she is responding well and we are getting another MRI to check progress.
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