I’m new to the site and have found everyone’s posts extremely helpful. It feels good to know I’m not alone in this journey.
I have an AVM in my right knee that effects my knee and thigh. My leg is swollen and hot and have sharp stabbing pains all day everyday. My AVM was diagnosed when I was 12. I had 2 embolizations (neither of them helped) and now I’m just trying to find a way to deal with the pain on my own.
Now that I am 30, I am finding I am having other problems such as trouble sleeping due to pain and sciatic pain on my right side (same side of AVM). I have gone to the doctor for these problems and have been given medications to help with nerve pain and have referral to a physical therapist. I can’t help but wonder if these other problems could stem from the AVM? Or maybe they are caused by me walking or exchanging my weight differently to make up for the pain in my right leg…? Or they are just problems that are typical of getting older. Has anyone else had issues like this as well? Thank you so much for your time and reading my long post!!
Stephanie, I would continue to follow up as I wouldn’t think the pain is just getting older and would strongly believe they are related to your AVM. I have just shy of 20 years on you, and my body has gone through a fair bit and don’t have the body pain you describe. Take Care, John.
Hi Steph,
I feel you. My story is quite similar though lower down. My VM is in my calf muscle and at this point has made my right ankle quite week. I now have arthritis in the ankle at age 32. Physical therapy helps, for me particularly massage as it reduces pooling of blood. Are you using compression, ice or elevation? I’m glad that the doctor is willing to help and yes I think its quite possible the additional issues can be due to your AVM. If your gate is abnormal or you favor one side PT can help you be aware of how you walk and help you build strength but make sure they know about the AVM. Otherwise they may push you too far too fast and flare your AVM. Best of luck. I too am in PT and will have to have orthopedic surgery on the ankle soon to protect my joint.
Hi Steph
My story is similar to your, mine was diagnosed when i was 5 years old. Intially considered as a birth mark. I had a many blood blows due to hit in that area. I am 32 years old. I feel that area is growing and have semi sphere lump developing under avm. I dont generally feel the pain. , but when i press between lump and knee i can feel severe pain. I have small blood spot developing on the skin , skin that thin i can see blood through it. They are very fragile and if they pop , i get a blood spray out possibly go 1 feet, just imagine the blood flow. I alway feel bit warm in that area. My right leg is bigger and longer than left.i have consult few doctors while i was in India, and decide not to touch it till i have pain, not sure if this is a right choice. I would like to know , are there any other body problem can occure ?
Stay strong
Thanks
Sid