Any advice would be greatly appreciated

I am coming up on my first embolization (the 19th) and was wondering if anyone could give me some advice on what to except. I know they will be puting me out and puting glue into the avm but what about the recovery? I know I have been very lucky to have not had any real side effects from all of this so how do I know 100% that the embolizations and surgery are what I should do? …Don’t get me wrong I trust my doctor and have faith in him but I can not stop thinking about it…

Hi,

It’s great that you have faith in your DRs, but I’m a little shocked that they didn’t give you a typical (although no two procedures are typical) scenario of the the process. If it were me, I’d call their office and ask them what the “happy path” is for you concerning this procedure: How long will it take, what is recovery time, what restrictions will I likely have?

Our last embo was 10+ yrs ago, so some of it might have changed, and I think some hospitals do it differently, such as the recent U-tube says they administer anesthesia, ours keep Chari mostly awake, though sedated so they could do a neuro exam before they used the glue.

For us, typical meant go in for pre-surgery blood work, etc 1 or 2 days prior, embo took 6-10 hrs, then to ICU overnight for observation, then straight discharge from ICU. She normally slept all of that day (couldn’t sleep in ICU due to other commotion), then we’d do something light the next day. By day 3, we could do light touristy stuff (we are in KS and did the embos at Stanford). Only restriction she had was stay within helo flying time back to Stanford. Of course, no contact sports, sky diving, scuba, etc–just common sense!

Other than being tired, not really any side effects, maybe a headache or two.

Best wishes,
Ron, KS

Hi Amma - there are as many different experiences as there are people, and no two are the same. I have been through a few embolizations, but they were in my lungs - so totally different experience. The avm in my brain was removed during surgery and again - that is a totally different experience from what you are about to endure. The one thing we all have in common is this condition…so we all ‘get’ where you are coming from. Before my procedures I wanted to read EVERYTHING I possibly could - and I pretty much did. I was so grateful for all the kind and caring people who so willingly shared their experiences with me. You are not alone - hang in there. Let us know how things go - maybe your story will help the next person! /pat

Thank you for replying to me. Sorry it took so long for me to get back on… I just had my first embo and im happy to say everything went great… a lot better then what I was expecting… I think I had myself more worked up then i needed to be. Now I am just resting on and off. I go from being really tired to wide a wake. the worst part of everything was being poked so many times for ivs and blood. My throat was sore when I first woke up too… but I understand from reading others stories that I have been very lucky so a little pain I can take. Next tuesday I go for the next embo so now I am only praying things go just as well.
Ron, KS said:

Hi,

It’s great that you have faith in your DRs, but I’m a little shocked that they didn’t give you a typical (although no two procedures are typical) scenario of the the process. If it were me, I’d call their office and ask them what the “happy path” is for you concerning this procedure: How long will it take, what is recovery time, what restrictions will I likely have?

Our last embo was 10+ yrs ago, so some of it might have changed, and I think some hospitals do it differently, such as the recent U-tube says they administer anesthesia, ours keep Chari mostly awake, though sedated so they could do a neuro exam before they used the glue.

For us, typical meant go in for pre-surgery blood work, etc 1 or 2 days prior, embo took 6-10 hrs, then to ICU overnight for observation, then straight discharge from ICU. She normally slept all of that day (couldn’t sleep in ICU due to other commotion), then we’d do something light the next day. By day 3, we could do light touristy stuff (we are in KS and did the embos at Stanford). Only restriction she had was stay within helo flying time back to Stanford. Of course, no contact sports, sky diving, scuba, etc–just common sense!

Other than being tired, not really any side effects, maybe a headache or two.

Best wishes,
Ron, KS