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AVM Survivors Network

Knee VM, treat now or wait?


#1

My 10 yr old son was recently diagnosed with venous malformation in the behind of the knee area. He has had two episodes of mild/moderate knee pain, once in 2014, another earlier 2018. The recent pain lasted for 10 days and recovered without treatment. But the MRI found the VM there. He is totally fine now. The first doctor we saw recommended “not mess with it now, watch and wait (until symptom worsens)”. We also got a second opinion from Dr. Patricia Burrows, she recommended sclerotherapy and biopsy. I know Dr. Burrows is the expert in this area and want to follow her recommendation. But I am still worried. Would the sclerotherapy make it worse? Is it better to be conservative or proactive? Thanks!


#2

My daughter has a vm on bottom of her left foot. She had her first sclerotherapy a few years back and it helped for almost two years with her pain. But she had her second treatment last year and it made it worse and left her with some numbness in her toes. If your son has no pain, it would probably be best to leave it alone. Pain is the reason my daughter had her treatment. To try and help give her some relief. Sending prayer your way.


#3

Hi Valerie, Thank you for sharing your daughter’s story. How old is your daughter? Where did she have the therapy? I hope her numbness will go away over time. I don’t understand why the sclerotherapy could make it worse, maybe the doctor didn’t do it right the second time and hit some nerve by accident? Anyway, that is exactly what I am worrying about. My son has no pain now. But my concerns are the potential knee joint damage and the rapid growth during puberty if we don’t treat early. It is a hard decision to make. Maybe we should consult more doctors before making the decision. Thanks again and best wishes to your daughter!


#4

She is 14 yrs old and is seen by doctors at Cincinnati Ohio children’s hospital, the heagenoma and vascular center. Puberty has made her have increase in pain but not effected the vm’s growth that I can tell. Did your son not have any issues till age 10? My daughter has had issues starting at age 2 and mri at age 5 showed vm. It has been a very difficult past few years. She also wears compression socks to help with swelling. Does yours sons vm also contain lymphatic vessel? My daughters does and was the reason the last therapy didn’t help. She has an appointment in July and are really hoping there is something they can do to help relieve her pain. Your son may have more option for treatment on vm on his knee, my daughter is on bottom of her and foot and limits her treatment option because of all the nerves that are around it. Thanks so much!


#5

My son is “lucky” that he had no issues all these years except that he had two weeks of knee pain, once in 2014, and happened again this March. Both times he recovered without treatment. I thought it was just too much sports or some minor injury. We did MRI in March, just in case it was injury, and surprisingly found the vm. His vm (4cmx3x2) is behind the knee, but not superficial, so you can’t see anything from outside. Maybe because there is some space in that area, it doesn’t affect his knee function and there is no noticeable swelling. The pain was probably caused by blood clotting. Doctors said it is venous malformation. They didn’t mention lymphatic, but I didn’t ask either. Can they tell from ultrasound or mri if there is lymphatic component? Dr. Burrows recommended sclerotherapy with STS and bleomycin after the ultrasound exam. She seems to be very knowledgable. What reagent did your daughter use? I am still learning this new thing. Maybe other reagent would be more beneficial for her? Thank you so much for sharing your experience. I hope your daughter can find something works.