In 2007 after 1 1/2 years of knee pain I noticed a small bump by my knee cap. Ortho Dr. ordered MRI and I was sent to an oncologist for removal of an unknown mass. They removed a mass larger than a gulf ball just below my knee cap. I was told it wasn’t cancer, but vascular in nature. They called it an AVM. I went on with life. They never sent me to a vascular doctor. In the past year my knee pain has returned and once again I feel a small bump. I remembered the Dr. called it an AVM and did some research. I’m returning to oncologist this week for him to check out the mass and point me in the right direction. Thanks to this site I located a doctor in my area and even though they practice at a children’s hospital they agreed to see me. I have no idea what to expect from the vascular work up or treatment options. I also am confused because every photo I see shows visible veins and bulging masses. I don’t have visible veins… does anyone else have AVM in legs without the veins or red/blue bulging masses?
Hi Mandirenee, AVMs can be internal or external- the internal ones don't always show- except for swelling. My AVMs are not in my legs, but in my neck and abdomen/torso. I did also have an external one that looked like a cluster of purple blood bumps. For me, that external AVM was "removed" through a surgery-- but this was before they knew what it was (1980s)-- the surgery apparently cut into the unknown internal AVM in the same area, which caused it to grow. I see Dr. Wayne Yakes in Englewood, CO -- he has done ethanol embolizations on the vessels in order to cut off their blood supply-- this has stopped the swelling in my neck completely, and the one in my abdomen is in a much more stable situation than it was prior to the treatments- we monitor it with yearly MRIs. I hope you have a good appointment and that the doctor can help you sort through the options for treatment :)
Hi Mandirenee! I also have an AVM in my knee area. The first indication for me was the swelling.It had been like that since puberty or so but every doctor dismissed it. I later noticed a little over a year ago the bulging veins but only when it was bent. I am not sure if this helps you or not. My guess is that it may not be as noticeable depending on how the blood is flowing and all.
I am surprised that they did not send you to a vascular doctor but it sounds like you were in good hands with the oncologist. I pray that you can find some relief and answers once you are referred.
My AVM was not diagnosed until we did an angiogram(this was after several tests). We first discovered aneurhysms in my knee after an ultrasound which we now know were caused by my AVM. I also had an MRI but it did not show anything so this is very interesting to me. I am always trying to learn more now!
As far as treatment options I can only tell you what I have been through or have been told. I believe a splint of some sort is an option. I hope I am using the correct term- it is early and I was trying to reply before work lol I have had embolizations with onyx. They went in through my groin with a catheter to inject it. I had three of those procedures within 6 months prior to my bypass surgery for the aneurhyms. I am afraid I will have to have another onyx procedure but it really isn't so bad as far as recovery and time.
Please keep us updated! If you need anything or just need to chat feel free to contact me!