Hi everyone. I’m a 28 year old female who was diagnosed last week with a large AVM in my right leg covering 29.5 cm. It covers most of my thigh and knee. I originally went to the doctor because I had knee pain and thought I injured myself while exercising. It’s been a whirlwind this month being bounced from one doctor to another thinking it was a meniscus tear, but finding out it’s an expansive AVM.
Right now the swelling covers my thigh and knee to the point where I can’t bend my knee past a 45 degree angle. I’ve been wrapping with an ace bandage and using a knee brace to help compress the veins and arteries.
I’ve currently been referred to a specialist, but have not heard back from them yet. In fact, I called to follow up and found out the doctor never actually placed the referral to begin with. I’m wondering if anyone has experienced something similar and what I should expect with treatment. Are there things I could be doing in the meantime to help with the pain while I wait for treatment?
Hi Anied,
Welcome to our unfortunate club. I also have a leg VM (in my soleus aka lower calf) though mine is small in comparison(2 X 4 cm). Compress, ice, elevate and rest are the easiest things. For most of us over the counter pain relievers don’t do much. Some find relief with Celebrex, Lyrica and opiods. The basic treatment depends on the severity of your particular AVM. If you were referred to a vascular surgeon might I suggest looking into interventional radiology. Most surgeons want to cut and that doesn’t work well with AVM. Interventional radiology favor embolization which either fills the vessels with something that will slowly kill them (glue or onyx) or fills them with ethanol which kills them quickly and painfully I might add. They may also suggest coils depending on what artery to slow down the blood flow to the malformation. The sad thing is no treatment “cures” AVM. For most of us with extremity AVM they come back. For me its 4-6 years between recurrence( I usually go the ethanol embolization route, though I did surgery and it only lasted 6 months). You might want to check out the extremity AVM facebook group. They are quite active and might offer more advice. I hope this information helps. We know that each one is different but it is a rare club. Best of luck getting your pain down.
Hi Rachel, thanks for the advice! I’m sad to hear this will be a lifelong thing, but am hopeful about doing 4-5 years between treatments. I’m hoping the size of the AVM won’t affect how effective treatment will be.
I hope the very best for you! I have a brain AVM rather than an extremity AVM of any kind, so I can’t help you with your specifics. From what I’ve read, I think you’ve got quite a challenge ahead, your AVM sounds extensive.
Best thing is to join the @Extremity group and to research in the Extremity category under Types of AVMs on the home page. Note, not everyone who has posted on the forum is still an active member. We moved platforms in summer 2016 and not everyone stayed active on the site but there are a good number of extremity members still to befriend.
I’m glad you found your way to this website- though I’m sorry you have been diagnosed with an AVM. There are painful and stubborn entities. They seem to have a mind of their own and react badly (tend to grow/morph) to being poked or prodded. It’s best to try to kill the thing with gusto- early and often initially. My AVM is on the area of the sole of my left foot. I had four angiograms performed by a great Interventional Radiologist who practices in Grand Junction, CO. He used the radiology component of the angiogram to see where he wanted to inject glue and/or alcohol. While I said ‘with gusto’ I mean to aggressively treat the AVM, while sparing as much healthy tissue that exists around the AVM. Some practitioners have injected glue or various alcohol products in a wider spread fashion that caused the patient to have problems with dead tissue around the AVM.
Pain relief: as described by one of the other respondents, icing and elevating seems to help. I was using a fair amount of Aleve and Ibruprofen with decent results… then my AVM hemmorrhaged, so I laid off the Aleve and Ibruprofen.
The IR procedures resulted in a 99% reduction/elimination of the AVM. Last treatment was January of this year. We did a follow up angiogram a few weeks ago to see if my little bugger was gone, growing or what. I pretty much was symptom free from January til a week or so ago. The recent angio showed the little bastard had started growing again- though the IR couldn’t quite reach the mass with the tools he had. We are going back later this month for another angio, this time the IR is bringing additional tools to poison the AVM with.
While this condition isn’t something any of us would wish for, you can have it effectively treated. You can get back to a pretty normal, pain-free life- though you may have to give up running and opt for cycling instead…
The Facebook AVM Group is a good resource of information as well.
Mychal, I actually live in CO, but am in the Denver area. I’ve been referred to a specialist with UC Health who specializes in embolizations, though I won’t see him for another four weeks. Is this typical? Are there any big concerns beyond managing the pain I should worry about until I see my doctor?
I didn’t know I was so close to Dr. Yakes either until I found these forums, so if treatment does not go well, I’m going to seek a second opinion with him.