Embolization?

Hey everyone,

I posted a while ago about being diagnosed and seeing doctors and all, and I guess now we're making progress, because my surgeon is talking about embolizations. No news yet on when it's actually going to happen, but I'm already nervous and stressing, lol. I was just wondering if anyone could detail their experiences for me, like a step-by-step guide of what normally happens, how everything feels, and the downtime after. I know the basics of it, what embolizing is, etc. but that's just from medical websites that explain it all in a technical manner and it's just not the same as hearing it from someone who's been through it and understands my fear.

If it makes a difference, my AVM is in my face. It's in between my left eye and my nose, trailing a bit down my cheek.

Thank you!

Embolizations are major surgery, but they are tolerable.

Done inpatient, you will probably be given a sedative, then a local while they make the groin incision for the probe (forgot the real name).

You will likely be awake as they feed the line up to the source they are looking to plug. Wife said she could feel it moving. If it's like my wife's, they will inflate a balloon at the target source, then do a neuro eval to make sure you don't lose some function. Once determined it's a good spot, they inject the glue (or whatever your team uses), then immediately remove the tube.

Wife's biggest complaint is having to lay flat on her back for SIX HOURS after they pull the tube. One time she was in ICU and thought her six hours had started, only no one had come to remove the tube. Was she HOT!

From that point on, before they started she stated "Who of you are following my gurney to ICU to remove the tube?" She didn't make that mistake again.

Overnited in ICU, then discharged from the hospital. Was a little weak/tired for a few days, but overall, no issues.

Ron, KS

Hi Kayla!

So def Ron's description below is pretty accurate. I'll add a few little tidbits that are different for us "no-brainers." We actually typically get it easier than the brainers in one really big way- we get to be asleep for it! :) I would be seriously surprised if your docs didn't put you all the way under. The brainers sometimes don't get to be completely sedated because docs want to monitor their reactions to having stuff moving about in their brains and making sure there is no damage from just getting to the right place and inserting die, embolic agent, etc. The damage they can cause in our face "just" being in there is much much lower. Obviously there is still a risk of complications but it's just not the same kind.

And Ron is right- the absolute worst part is laying there forever waiting for your "stay still" time to be up. I'm lucky and my hosptial only makes me wait 4 hours. But I used to have to wait six. I almost never stay overnight afte the embo. As long as I can eat, drink, and use the restroom they will let me escape. I would say that those three items are more effected by your reaction to anesthesia than to the embo itself. The longer they keep you under, the worse you will feel. Headachey, lethargic, and just blah. And again, alot of that is from the anesthesia itself. Pain wise- swelling in the area where they embo can cause nerve pain and general soreness from swelling, but it's less pain than being cut open and operated on.

I just had my 33 or 34th alcohol embo out of prob 45 total embos (seriously I've lost count) last week on Thrusday. I ordered some veggie broth and a fruit plate before I went back, made the RAD techs get the table all puffy and warm for me with the weird airbag things, chatted with them and my anesthesiologist, and provided play by play comentary to them as I became loopy from the drugs. Then I woke up, hung out chatting with the nurses in post-op & recovery while dosing in and out of sleepiness, didn't need any pain medicine or steroids, ate my little meal, used the bedpan twice (I had the IV in for a while!) and then we were outa there. The next day I was tired but managed to get ready for a road trip out to visit Rocky Mtn Nat Park and an early morning breakfast with hubby and my girlfriend. I do tend to stay a bit scattered and loopy from the medicine even into the next day. I would never drive myself anywhere or take an accounting test or anything :) Swelling set in more for me the next day and I was more uncomfortable than anything. Managed to avoid becoming total cyclops, but I'm still puffy and my little eyelashes hate me! And this is day 4 post op. I'm at work, and being my bossy little self with no complaints other than my irritated eyeball.

I have a couple movies posted up here, and the first two are from embo's. You can see how I'm acting after the embo. Not high energy, and definately not feeling great. But smiling, and not a total wreck. I'd say that is a success :)

Of course, I'm used to them with so many under my belt. I can't say for sure how well you will react. The factors really are how long you are under, the embolic agent used and how much swelling it causes, and then how that affects different areas of your face. If they embo close to your muscle, I'm gonna say that will hurt much worse than just part of the random tissue part of your face. If swelling puts pressure on your eye, that's no fun. But the procedure itself which seems SOOOO very scary, it's just not as bad as we freak ourselves out anticipating. Took me a while to recognize that it really wasn't that bad and that my anxiety leading up to it was actually way worse than the actual embo!

Good luck and let me know if I can answer any specific questions for you.

Thank you all for your replies. :slight_smile: It really helps a lot to hear it first-hand, I think I’m significantly more prepared for it now that I know I’m not gonna die or anything lol.

HI, I CANT SAY MUCH ABOUT HOW THE EMBO WILL GO WITH THE AVM BEIN WHERE YOURS IS BUT IT’S ONE YOUNG LADY ON SITE AND SHE HAS HAD A LOT OF EMBO AND SURGERY, SHE IS ONE OF MY FRIENDS SO I WILL GO OVER AND ASK HER TO LOOK FOR YOUR POST AND I KNOW SHE CAN HELP YOU. BE BLESS

HI SHALON, I WAS JUST COMIN OVER TO ASK YOU TO TALK TO THIS YOUNG LADY ON SITE AND I SEE YOU ALREADY HAVE. GOD BLESS TAKE CARE

Shalon said:

Hi Kayla!

So def Ron's description below is pretty accurate. I'll add a few little tidbits that are different for us "no-brainers." We actually typically get it easier than the brainers in one really big way- we get to be asleep for it! :) I would be seriously surprised if your docs didn't put you all the way under. The brainers sometimes don't get to be completely sedated because docs want to monitor their reactions to having stuff moving about in their brains and making sure there is no damage from just getting to the right place and inserting die, embolic agent, etc. The damage they can cause in our face "just" being in there is much much lower. Obviously there is still a risk of complications but it's just not the same kind.

And Ron is right- the absolute worst part is laying there forever waiting for your "stay still" time to be up. I'm lucky and my hosptial only makes me wait 4 hours. But I used to have to wait six. I almost never stay overnight afte the embo. As long as I can eat, drink, and use the restroom they will let me escape. I would say that those three items are more effected by your reaction to anesthesia than to the embo itself. The longer they keep you under, the worse you will feel. Headachey, lethargic, and just blah. And again, alot of that is from the anesthesia itself. Pain wise- swelling in the area where they embo can cause nerve pain and general soreness from swelling, but it's less pain than being cut open and operated on.

I just had my 33 or 34th alcohol embo out of prob 45 total embos (seriously I've lost count) last week on Thrusday. I ordered some veggie broth and a fruit plate before I went back, made the RAD techs get the table all puffy and warm for me with the weird airbag things, chatted with them and my anesthesiologist, and provided play by play comentary to them as I became loopy from the drugs. Then I woke up, hung out chatting with the nurses in post-op & recovery while dosing in and out of sleepiness, didn't need any pain medicine or steroids, ate my little meal, used the bedpan twice (I had the IV in for a while!) and then we were outa there. The next day I was tired but managed to get ready for a road trip out to visit Rocky Mtn Nat Park and an early morning breakfast with hubby and my girlfriend. I do tend to stay a bit scattered and loopy from the medicine even into the next day. I would never drive myself anywhere or take an accounting test or anything :) Swelling set in more for me the next day and I was more uncomfortable than anything. Managed to avoid becoming total cyclops, but I'm still puffy and my little eyelashes hate me! And this is day 4 post op. I'm at work, and being my bossy little self with no complaints other than my irritated eyeball.

I have a couple movies posted up here, and the first two are from embo's. You can see how I'm acting after the embo. Not high energy, and definately not feeling great. But smiling, and not a total wreck. I'd say that is a success :)

Of course, I'm used to them with so many under my belt. I can't say for sure how well you will react. The factors really are how long you are under, the embolic agent used and how much swelling it causes, and then how that affects different areas of your face. If they embo close to your muscle, I'm gonna say that will hurt much worse than just part of the random tissue part of your face. If swelling puts pressure on your eye, that's no fun. But the procedure itself which seems SOOOO very scary, it's just not as bad as we freak ourselves out anticipating. Took me a while to recognize that it really wasn't that bad and that my anxiety leading up to it was actually way worse than the actual embo!

Good luck and let me know if I can answer any specific questions for you.