Hi guys. I joined here because I feel like no one else understands what I’m going through since AVMs are so rare and don’t have much attention brought to them. I have a cerebral avm and it’s 4x4 cm. I found out about a year ago & tomorrow is finally my first embolization. I’m having 2-3 embolizations and then a final surgery. I’m super nervous and just looking for some support If you’ve had embolizations, how was it and how’d you feel afterward?
I had no problem with mine. Just a little soreness where they went in though my groin.
I’ve never had brain emblilization done before but I do no that it is a very stressful moment when comes to the day of your surgery. Best of luck and let us no how things go.
I had soreness for a few months after my angiogram was done last summer too. I’m not ready for the groin pain all over again
Thanks John will do
I haven’t had an embolization but three angios and gamma knife. Will be thinking of you, take care and look forward to the update. Take Care, John.
I hope you’re doing well now! Thank you I appreciate it John
Embo tomorrow? You’ll be fine!
My AVM was smaller than yours in diameter but the doc said he used lots of glue, so I think I had a slightly challenging time. I’d say expect your head to wonder what’s happened. You will want some pain relief after and they’ll keep you under close observation afterwards for a day, then into a lesser supervision ward for a day, then hopefully home.
I had glue inside my head, right occipital but also some veins on the outside of my head and those were sore for at least a couple of weeks afterwards.
However, would I do it again? Yes. It was not something to be frightened of. Did I cope with the head pain? Yes.
You’ll be fine.
All you have to do is turn up at the right time in the right place and its like going in for the angiogram but they put you to sleep and you wake up later with a dry mouth.
Not the best experience to be had but treat it like going on holiday. All you have to do is lie down somewhere warm for a few days and the doctors and nurses will look after you and explain everything step by step. That’s how I looked at it and it was fine.
Very best wishes,
Everything will be fine! just a little nervous before, but its manageable.
Thank you for your positive words they really mean a lot. I just got my first embolization done today, currently in the hospital and can’t sleep. I had a minor headache and pain but nothing I couldn’t bear. Having a good team of doctors and nurses does help! I’m glad I have such good people by my side during all of this.
I’m glad you had such a great recovery and I appreciate your kindness Richard
Thanks for the support
Great to hear it went well! Take Care, John
Do you know what agent they will use for your procedure? I will be having mine too and I’m still to decide if I’ll have Onyx or PHIL to use. My doctor is telling me that PHIL is good but it is still under study for FDA approval.
If anyone have any updates on these agents, Onyx or PHIL, kindly inform me.
I had onyx! My surgeon didn’t give me an option anyways lol but my embolization went smoothly and was successful. I hope yours goes well
That is good news… thank you.
Welcome to AVM survivors!
I am the only person I know who has had a PHIL embolisation. The impression I get is that it is perfectly good, though my reading of it was that it might be a bit more irritating than Onyx. It comes in ready mixed phials, so really easy for the consultant to use, less fussing about, perhaps less risk of an infection and quicker in and out of the theatre (but as I say maybe more recovery time for you and me).
Hope this helps,
I may be behind and not timely, but I had three. The whole ordeal is overwhelming and stressful. I was fortunate not to have any problems. It is so important to rest and relax after every procedure and let the femoral incision site heal. I pushed it on the 2nd embolization and resulted in a hematoma. My head was sore. Key was I kept hydrated and although you don’t feel like it, EAT. Relax you got this.
Thank you DickD for the info.
What did you do that led to a hematoma? I’ve been really active since my embo and I’m afraid I’m pushing it because afterwards I get pain and discomfort in my groin area + a headache & weakness.
It was within a day or two of the procedure and I either lifted something or bending over too much. Your groin will be sore for a couple of weeks, just take it easy. The anesthesia made me feel weird until it worked itself out (headache, nausea, etc), that why drinking plenty of water was good for me. Patience is not my strong suit, so I wanted everything to happen over night. It has been six months since my last procedure and I am still working through weird ached and pains. I try not to focus of it too much and try to stay as positive as possible. I know it is hard, but not impossible. I am a farm woman so exercise and hard work was my life. I was so surprised to see how quickly I lost muscle over the last year because of the physical restrictions. I have to remind myself , “The old gray mare just ain’t what she used to be”, and give my body and brain time to adjust . Good luck.