I’ve had 2 ethanol embolizations for a venous malformation in my right forearm. It spans from slightly above my wrist to my elbow. My most recent embolization was at the end of April.
To make a long story short, the pain only improved for roughly about a week after my first embolization, so my IR suggested to repeat the procedure. My biggest concern has been the fact that I have very limited range of motion in my right wrist. Like pretty severe pain whenever I move it, which is problematic when you’re right handed. My IR said it’s the VM causing the pain, so I was hopeful this 2nd embolization would help, but so far…no improvement. It’s frustrating and discouraging, to say the least.
What has your recovery been like post ethanol embolization? Is it normal to still be in pain / have more pain 3 weeks out? I kind of am hoping that the pain has spiked, and will get better over the next couple of weeks. On the other hand, I’m getting a bit nervous, since this is exactly what happened with my first embolization.
Also, what has your experience been with follow up? After my first embolization, the nurse said the office would call for follow up. I never heard anything, so I eventually called after 2.5 months of no improvement. Is there a certain timeline for follow up? I’m a teacher heading into summer, and would honestly like to get anything related to follow up done before next school year starts, but also want to follow correct timelines, (if there is one?) etc.
Welcome! Hopefully some of our group will be able to answer some of your questions. We have a wide variety of experience here for sure. I’m a brain AVMer who had Gamma Knife so can’t really relay too much. It’s great you found us, and I would anticipate some folks being able to pass along their experiences.
I see in your profile about Orange Theory. I have a few friends that go and also love it. I should give it a whirl one of these days! Take Care, John.
I’ve had embolizations done with two different IR’s as well as consults from four others, and I will say that in my experience everyone has their own ideas on: time frame on follow up procedures, how much pain you should be in post embolization, etc., and unfortunately none of them want to admit that there’s any other way of doing things.
For myself with my first four embolizations I had an IR who was a very intelligent man, but got a score of zero when it came to communication and actually explaining things. For the first two I had them done about a month apart, then being in physical therapy for several months before having the next procedures. I never could get much out of my IR as far as what to expect, but lucky for me one of the nurse was very knowledgeable and willing to keep in contact with me via email for any questions I had. For recovery I was told that more than likely it would take several procedures, but that there was no real way to say for certain since everyone is different.
For any pain I had after the procedures, there were definitely several times I was still in a significant amount of pain weeks after the procedure, but those were also the two procedures were they were able to treat a large space of the AVM (and had then informed me that I would more than likely be in more pain). Also I will say that regardless of the procedures I would have what I call “flare ups” for lack of a better phrase, where I hadn’t done anything different, my arm or leg (I have an AVM in both) would just hurt like crazy. That could last for a couple of days sometimes, idk why it happens, but it’s definitely something I’ve experienced loads. Maybe what you’re dealing with is something similar?
Overall I’d say I only noticed significant improvement with the pain with my AVM after the third procedure. For the one in my leg, it ended up taking five procedures to now be pretty much pain free.
Again I say this knowing everyone’s different
But I’d think it’s more than reasonable to do procedures every month, as long as your all healed. Also, I’m not sure if your IR does this or not, but I’d also suggest sclerotherapy if they do it. My first IR I saw was initially very insistent on only doing ethanol embolizations. However when I wasn’t having as much improvement with the first few procedures, he did sclerotherapy with ethanol embolizations and that helped loads.
For not hearing back from them, I know it’s super annoying and you shouldn’t have to, but I’d be blowing their phones up! Lol that’s the only way I got half of the answers I got from my previous IR. There were times I’d call his office every day of the week.
Hopefully this helps somewhat
Wishing you luck!
Thank you so much — I really appreciate the insight! I’ll definitely bring up the idea of sclerotherapy when I speak to my IR next (I’ll start blowing up his office lol), but maybe hoping this is just a flare up —- I’ve always had them too, and have always called them the same thing! Didn’t even think about that because of the timing post embolization, but could certainly be the case!
Thanks again! And I’m happy to hear that you are almost pain free - so awesome!
