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?
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.
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.
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.
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.
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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