I am getting ready for my first endovascular embolization for my AVM, the 18th, that is next Friday.
Could anyone tell me what to expect during and after the procedure?
Thanks!
Anand
Anand,
Hi. Welcome to avmsurvivors. It’s great to have you!
My experience of an endovascular embolization in my brain is that you go into hospital for a few days…
The operation is usually conducted while under general anaesthetic, so you’ll go into X ray theatre, go to sleep and wake up in the recovery room. The solvent that has been used in the embolisation material and the contrast material used to see your AVM on X ray will still be circulating round your body and consequently you’ll have a headache and your mouth will taste like you’ve slept with it wide open for a couple of days without brushing your teeth! So you’ll be quite uncomfortable and you’ll need some sips of water.
Post recovery, you’ll transfer to the neuro ICU and have a nurse looking after you, checking in your blood pressure, sats and responses (e.g. shining a light in your eye) pretty regularly through the day and night. With a bit of luck, you’ll move off the neuro ICU to a neuro ward the following day and go home once you’ve breathed out all of the solvent and are no longer needing hospital-grade painkillers, usually 2-3 days later.
After being at hospital, you’ll likely still feel imperfect and need to take it very easy at home and use Tylenol to manage the remaining discomfort until that fades away.
Overall, I found the anticipation of the operation worse than the reality. I hope you find it likewise.
Obviously, it is a dangerous operation and there is a risk that you have a bleed during it and so you could find that you spend a lot longer in hospital, you might find that you can’t do certain things after the op (for example, you may struggle to speak or to think straight or you might lose your sight temporarily or other effects. It would depend on where you have a bleed). I think the key thing to have in mind if this happens is that injecting foreign material into your brain causes it to get really quite upset and as the solvent abates, some of the effects of the operation will also go away, so if you wake up not being able to see or not being able to speak, don’t worry that it is a permanent thing: it is just as possible to upset these things with the assault that is the solvent or the contrast material or other irritation from the operation.
My doctor advised me that he had successfully blocked my AVM with one treatment but beforehand he had indicated it might need two approaches, a few weeks apart. I had an angiogram to review the blood flows about 8 weeks post embolization and I was given the all clear.
I can honestly tell you that it takes a lot longer to feel back to normal, so after the operation, although all of the pain was gone within a week or so, actually feeling “normal” took me a very long time.
I hope this helps. Please feel free to ask about anything.
Very best wishes,
Richard
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Wishing you the best buddy 
Basically everything Richard said
As far as embolisation goes,
Mine was basically very similar.
Go in, get put under. They do their thing inside your brain for hours.
I woke up in the ICU ward hours after.(not in recovery) Unsure why but i was in no position to ask. I didn’t care to be honest. My head hurt too much to think or move. I didn’t have any bad taste at all but we are all different
This is not to scare you.
Everyone is different. Just my experience and since you asked, i want to give you a genuine answer.
During surgery, nothing. You should be fast asleep and feel nothing
The worst thing i found was the headache after as i can’t have anything but paracetamol/acetaminophen as i don’t have a receptor for opiods and can’t have nurofen so i just had to suck up the headache with no painkillers
Each person that came in to read my chart to see what pain meds they could give me, just looked at me almost with tears in their eyes because they couldn’t give me painkillers and i couldn’t move from the head pain so as long as you can get painkillers you’ll be right buddy
Mine was unique curcumstance. I’m sure you can have painkillers
There’s lots of things they will be checking for the first few days (especially first 24 hours) but don’t freak, as it’s normal and they are just checking to make sure your brain is running things the way it should
A word of warning. Don’t freak out if they find things they “seem” concerned about. I had a few things like peeing out more fluids than i was taking in and my blood pressure was all over the place which they were concerned about both. But it all settled down and returned to normal after a few days
This isn’t a basic operation. It is serious and can feel scary so everyone is here for you but the doctors are very good at what they do and the success rates overall are very good so put your faith in them and I’m sure you’ll be ok
Oh and things might feel totally fixed after, or they might not. Everyone feels different but the main thing i would stress is to listen to your body and take it very very easy for as long as you need to
Best of luck
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Hello my friend,
Thank you so much for telling me your story in such detail. I am much relieved to know that it is not that big a deal after all. Though I am sorry you had to put up with a lot of bad head ache as you could not tolerate any pain killers!
One more week more and I will know my fate! I was fearful of the consequences of the surgery, as I do too much reading into medical literature and learn about all the off shoots! I have stopped reading now, realizing that with all the reading, an engineer that I am can never become a neurosurgeon
I will be in a good hospital with good care and hope to survive the ordeal…
The very fact that you are here to reply to me, proves that you have recovered fully and now doing well!!!
Thank you, and God bless you!!
Anand
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Hello Richard!
Thank you for taking the time to write to me! I must say that you are a true survivor with the right spirit, and considering the complications that you have been through, you have done well!!!
You are very courageous, I must say. I hope I will be able to suffer so many frightening consequences, and survive. I have been told by my doctor that I may be discharged after two days…but I am going in, mentally prepared for a week
Thank you my friend! This is a great community to be part of! I am hoping to come back from my surgery and post my experience here.
Bye for now!!
Anand
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It’s always hard for me to try to understand how an embolization would feel without a rupture first.
Since I hemorrhaged before they decided to take the embolization route - it has to be quite more routine(not an easy one, by any means).
The two members above seem to have it spot on, I would.
Wish you well!
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Anand,
I think I had the easier ride than @AlwaysCurious or @mike_az_21 because nothing went awry with my op. No rupture, no trouble with painkillers.
However, I’ve read enough here over the last 6 years to know that one of the things I would have appreciated knowing beforehand is that if it seems to have gone a bit wrong when you come round from the operation: if something doesn’t work properly: don’t panic. There are plenty of people here who, having had surgery or embolisation have had side effects that have lessened or gone away completely some time afterwards. If I’d come round blind, I’m quite sure I’d have thought it likely to be permanent and I’d have panicked. It doesn’t necessarily mean that, so if something unusual goes on with you, my encouragement is to stay positive.
The other pre-op advice is to make sure you go to hospital nicely hydrated. You’ll need to starve for a period the previous night but before that, just go out of your way to make sure you’re properly hydrated for the day or two before.
Let us know how you get on. We are always interested to know.
Very best wishes,
Richard
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Shoot, I don’t about one having easier than another - some on here definitely have it rough, that’s a fact.
But, if I found of my condition before the rupture who knows what it would have done to me mentally.
I’m just happy as f*** to be the way I am today