I was recently diagnosed with an AVM in my ankle (wrapped around the artery) and am getting a little more scared for the upcoming surgery (i’ve seen many of yalls stories, good, bad, and ugly). I’m humbly asking for advice on what route to take, because it seems there are many, and which one will not have the worst possible symptoms or complications.
I understand with surgery of any caliber that it has an amount of risk, side effects, and symptoms. Mostly asking for which of the available routes would be the best course of action to mitigate risk.
So far i’ve had 2 X-rays, and MRI, and am currently in the dr office for a doppler ultrasound with surgery getting scheduled soon after today.
Would appreciate any advice, or reassurance on the whole thing. Just naturally getting scared as the day comes. Thanks everyone
Welcome to AVM survivors! It’s great that you found us, just a shame you had to come looking, same as we did!
You need to have a read around the Extremity area of the site and get the input of the @Extremity folk. I’d say the main thing is not to panic but get the views of more than one surgeon as to what to do / whether to do anything.
We have a number of people with AVMs in their leg or foot or arm or hand. The impression I get is that such AVMs are very difficult to resolve and perhaps the majority of extremity AVM survivors will spend their life dealing with it.
What courses of action have you been advised on so far, with what certainty of outcomes? I’m aware of Onyx embolization, sclerotherapy and some specific treatment modes such as alcohol embolization or bleomycin sclerotherapy with electroporation. I’ve heard of these latter two being used in recent years.
Thank you for the warm welcome and the response! Very happy to get the input of people who have been through it before I go through it.
I will definitely join that group and put my experience so far in there!
After the ultrasound I had today, they want to go the embolization route. No other route has been discussed just yet, but they’re sending the ultrasound to my Dr within the next 1-3 days. From there, there will be a deeper discussion about what should be done, and risk assessment.
In the meantime, i’ve been off my feet, other than the occasional walk to the bathroom or to make lunch. I’ve also been wearing a boot to give better support and relieve the pressure off my foot (a previous MRI and ultrasound showed that because of the AVM, caused the other veins in my feet to be inflamed).
I hope this offers a little bit more clarity on what’s currently going on
Be calm and surround yourself with positive people. I had a very scary, large AVM right parietal occipital, 12 hours surgery, and hospital aid forgot to put the side of the bed up. Fell out, had to have emergency surgery, flat lined, had to learn how to walk again and here I am 35 years later, better than ever. You’ll be fine!
