So I’ve had an AVM in my right ankle since the age of 10 (I’m 31 now). I have had several sclerotherapies, and two embolizations with Dr Yakes, the latest of which was about 12 years ago. I found that the treatments didn’t help the pain much and sometimes even made it worse. But the pain continued, and I ended up getting an attempted resection around 10 years ago. Got a little relief from that for a while, but these suckers are persistent.
Fast forward to now. It’s been really bothering me lately. I have noticed the way I hold my weight on that ankle is different, I’m getting pain in new areas, the amount of time I can spend on it is getting shorter and shorter, etc. I decided I needed to figure out where the AVM is at with the increased pain + all the changes, I had an MRA today with a new doc (Dr Vogelzang in Chicago).
Turns out I in fact have several AVMs, including on the bone, wrapped around my nerves and in the nerve sheath, etc. The doctor used the terms “expansive and invasive.” We discussed my history, but that the pain is now at a level surpassing what it’s been in the past. He has a hunch that my past sclerotherapy was treating the larger, more superficial malformation and that the interior ones may not have been treated (I certainly wasn’t aware of them, so I doubt my doctors were). But it’s just a hunch. He also said there’s a chance I may be one of the unlucky ones who just don’t respond well to the treatment.
I’m weighing out my options. I’m afraid of going for another surgery and worsening the situation I have already. But I also don’t feel like I’m ready to surrender to a future of pain yet.
So I’m stuck, and I thought I’d reach out and see if you lovely people have any thoughts or experiences you’d like to share. Thank you!
Sure sounds like a lot to consider for sure. I can’t help too much as I’m a bran AVM guy, but do have a couple thoughts. For me when I was making the decision about what to do with mine after the bleed, I decided on gamma knife given an assessment of the risks. My drs were really good and when one of mine, who would do the craniotomy said if it was him, he would go with Gamma Knife, it made my decision much easier. But, people did ask me if I think I made the right decision, I replied that time would tell if it was right. I was completely at peace with the decision, so whatever was to follow, I could accept that I weighed all factors and reached what I determined was best, at that point in time. My advice is get as much info as possible, weigh the options and the risk, be at peace with whatever you decide in the moment. When things change, as they have for you now, reassess, time and circumstances impact what the best decision may be. Take Care, John.
Hi. I am yet to have my first embolization so I dont have any experience. Because of the pandemic, my treatment has been postponed for over a year now. But I agree with John. Weigh the risks, that is what I did. Ask the doctors of the risks and then decide if they are worth it compared to the life you have now. Is it potentially limb-threatening?
If I understand correctly, it has been a long time since you had treatment, maybe there is a better chance now? Your doctors confidence might also be important in regards to your decision.
No risk to the limb according to the doc, so that’s good. But while he did seem confident in his ability to do the procedure and whatnot, he did not seem confident in what results I could experience from it. Said it’s possible it’s the deeper AVMS that are causing the pain and they weren’t treated before, but it’s also possible that’s not the case and the available treatment modalities are just inefficient at treating my AVM’s - he described each one like a fingerprint and said it’s not uncommon for sclerotherapy/emobolization to be ineffective for some people’s pain/condition. Seems to be a true gamble, and I’m just trying to gather all relevant info I can before I decide where to lay my chips.
For me, time made it easier for me to get perspective of the situation. Maybe give it a month or two after you have gathered information, maybe checked with other doctors and their belief on prognosis? And then take some time and let the answer come to you.
I was in the same position as you are a couple months ago, just on a much shorter timeline between procedures . (First embolization was done in November and 2nd in April. ) Totally understand how stressful it is. I also was treated by Dr. Vogelzang.
There was more pain after my first embolization, so the decision to do a second treatment was difficult. I made a lot of mental risk vs reward lists, and eventually decided that the benefits out-weighed the risks. Time also helped and sitting with the decision. Getting it on the calendar actually eased my anxiety verse contributing to it - it was then that I knew I made the right decision!
I also think a good question to ask yourself is if you 100% trust your current IR’s perspective. If you don’t or have any doubts, seek a 2nd opinion. I’d imagine, your IR might even give you a name of another doctor if you asked. I was bounced around from doctor to doctor before I was finally referred to my current IR and felt that he had the best understanding of my VM and treatment plan. I’ll also mention that I’ve always felt comfortable with the fact that he seems to err on the side of caution, especially since my VM is close to some nerves in my forearm. (But then again my encounters with him have been short, so maybe I’m totally off base )
Hope that helps a little! Good luck with your decision!
I wish I had a better answer for you, but it’s honestly hard to say. My pain hasn’t decreased much - but I also just had the second embolization a little under a month ago. I’m still hoping it improves as I get into month 2 and 3 post embolization.
I would say give it a shot, so at least if in the worst case scenario (which I hope doesn’t happen) you know you tried everything you could. I have an extremely large AVM that consists of my hip, buttock, and pelvis. Before I got it treated I never had any pain and the only reason I even got diagnosed was because I noticed a egg sized lump on my butt cheek that I thought was a cyst because it showed up seemingly overnight. Had an MRI done and it showed that the lump is the tip of the iceberg of a very large and complex AVM, in fact my specialist has told me mine is the worst he has ever seen. Like I said I never had any pain which is why it took such a long time for me to get it diagnosed ( I was 18 when I first found out about it but it’s been growing and spreading my whole life as far as I know.) However my doctors reccomended embolization to prevent heart failure and for me to keep the ability to use my leg. I’ve had 3 embolizations and sclerotherapy so far with many more to come and I noticed it has made my symptoms worse. Instead of having a little lump on my left butt cheek, I now have a butt cheek and hip 3 times the normal size, discolored, veins popping up everywhere, and the butt/hip is so large that my leg has become longer than my other one. Since I started treating it I now have pain from the AVM in general, as you can imagine sitting/laying on it hurts. I also have pain from the leg discrepancy from where I can’t walk completely straight up. And lastly I have nerve pain and nerve damage because my sciatic nerve runs through the AVM and the embolizations are the cause of the nerve damage unfortunately. I sometimes regret treating it because of the physical distress Im now permanently stuck with but I know that without treatment things would’ve probably ended up much worse because my AVM was very high flow. From what my doctor has told me the flow has slowed down a lot. Enough of my rambling, my point is since your case is opposite of mine and even without treating it you are in pain, I would at least try treating it further and just hope it will help. Best of luck to you. If you ever need someone to talk to you can PM me
. (First embolization was done in November and 2nd in April. ) Totally understand how stressful it is. I also was treated by Dr. Vogelzang.
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