I had my first embolization done on my heel in 2014. After an MRI, Angiogram, and 3 platinum coils, barely anything improved. I just had another bleed a few weeks ago and I have to go in for another embolization treatment. I was curious if anybody has had a similar experience and if a second embolization will help? My AVM is located on the inside of my left heel and I just want to be able to walk and wear shoes without pain.
You already created a new topic! I really should read ahead a bit!
I’ll let some of the Extremity members answer you, as I think you need their experience, in particular.
In a brain AVM, I don’t believe an embolisation is always successful. I believe I’ve seen figures between 20% successful and 50% successful but I don’t know which end of the scale is right, or which might be more relevant to an extremity AVM.
I have a right occipital DAVF which I had embolised in April. My consultant told me before the procedure that it might take 2 goes to treat my AVM. Fortunately, so far, I’ve needed just the one embo.
Hope this helps,
Richard
Hello EmmaMargret,
Yes, a second embolization might be needed to chip away at the AVM mass. I have had four embolizations- some of the glue/concoction my Intervention Radiologist used was injected directly into the AVM through the skin on the bottom of my heel, some of the mixture was administered through the angiogram catheter. My first procedure was last November, two in December and the last one in early January.
By April my left foot shrunk back down to the size of my right (unaffected) foot. The heel skin that covered the AVM had to be removed in December to allow for the remaining dead AVM tissue to be removed. The heel skin had pretty much completely grew back by the end of February/early March. I no longer have pain/heat where the AVM was. I no longer walk with a limp or have any limitations at all as to how I use my foot.
I will be having a follow up angiogram later this year with my I.R. physician to see if any of the AVM has grown back. If it has, it won’t take much for the physician to kill off any remaining or new AVM growth. Hang in there- you should be back to walking, bike riding or whatever you like to do once you’re AVM has been successfully treated.
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By the way, the IR doctor (Dr. Chris Hampson MD, Grand Junction, CO) didn’t think coils would have been helped deter/kill off the AVM on the bottom of my heel, so we didn’t use them.
My response to ? @ the # of embos required for AVMs. Like snowflakes (haha) each AVM is different and the treatment plan is specific to it.My venous malformationis in the groin area and it is quite extensive, èncompassing the genital area, deep thigh including the back side of the kneecap as well as the buttock area. IT looks like one of those spaghetti loops of entrances/exits to a super highway. I recently saw a beautiful night foto of the George Washington Bridge. All those spagnetti-like clusters reminded me of my VM cluusters. Each one could be a complicated VM in itself. So I have had more than 12 embolization procedures since 2001. One procedure definitely might address two very different areas of the large cavernous VM. …VMs dòn’t “grow back” per se, but when one vein is closed, then “collateral circulation” might very well cause a small diameter vein to èxpand and thrombose. This reaction most likely will cause the need for that new VM to to be be shut down by an IR. I find the analogy of a superhìghway to be poignant. If you shut down a road, oddly called an “artery”, then there will be a back up of traffic. …I am a disability-retired school nurse. So I am very familiar with breakind down a medical situation into terms that 6-10 yr olds understand. So I may sound simplistic, but it might benefit a child. Or many adults who just are not familiar with medical lingo. Whatever lessens anxiety benefits the whole family. My life, at age 62, is very limited due to the KTS GENETIC INHERITANCE. It is a bummer. Today is a good day, tho.