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What to expect?


#1

Hello all,

My 2 year old has her first embolization/arterio sclerotherapy appointment in 6 days (it seems like it’s taken forever to get this far!) I was wondering if anyone can tell me roughly what to expect as far as how she will be feeling afterwards and anything we can do to make her more comfortable. She will be fully anaesthetized and will take the oral Verset to help keep her calm and make the transition easier. Mainly I was wondering if people could tell me what their experience has been as far as recovery time/pain/ etc. Since the catheter goes in her femoral artery, should we expect lingering pain there in the days following? She’s never been a particularly active child so we are taking a stroller in case it hurts to walk but I’d love to have some advice so I’m not completely blindsided. Her AVM is in her face so I don’t know if there will be pain or swelling or discomfort in that area as well. She loves to eat but as she has a mass growing in the back of her mouth sometimes the pain will keep her from eating. Hopefully this won’t be the case as she gets REALLY cranky when she’s hungry. Also, if anyone could tell me their experience re: recovery times that would be super helpful. With the MRI doctors said to expect to be good to go within the hour after the procedure but it ended up being between 4 and 5 hours before we felt she was feeling well enough to leave the hospital. This time they are saying to expect a 4 hour procedure with a 4 hour recovery and we should be out of the hospital by 6 pm. I feel like I should probably expect around double what they are predicting because that has been our experience each time (CT scan=30 min predicted recovery was actually over an hour plus a trip to the ER later that day for ~4 hours and MRI 1 hour ended up being about 4 1/2 hours). PLus does anyone have any recommendations on things that made you feel better afterwards? Sleep, distractions, ice cream, anything? I’d love any feedback you guys can give me…


#2

Hi

I’m a bit different because my AVM was in my dura mater (outer lining of brain) but was quite high volume flow and I had quite an area on the back of my head (including outside) that was pulsing with the abnormal flow. I felt quite poorly by the time I had my embolization, so may be much worse off than your daughter

I think my op was about 2-4h but turned out longer. I think I went in at 3pm and was on a ward by 10pm. For mine, the plan was to remain on a high surveillance neuro ward for a day then move to a normal ward the following day before discharge home. Overall plan was 2d in hospital. I think because my op was quite late in the day, I was there Mon to Wed, home end of Wed.

Post op, my external veins were quite sore and I definitely needed a week off work. Overall, I had 2 weeks off work and a further week of holiday.

So… much more extensive than you are being told. I think that is more indicative of my case versus your daughter’s. I do think she may need some pain relief for a number of days post op and could well be really uncomfortable (I mean uncomfortable and being so young, difficult to communicate with and encourage).

For a facial AVM she may be having a different embolization than me. I believe an alcohol embolization is quite common for extremity and facial AVMs. My understanding of alcohol embolization and possibly sclerotherapy is that it is more uncomfortable than glue. So again, she could be really quite uncomfortable.

So, I think she’s going to need lots of encouragement and reassurance but she will get through it and it will be a big, big relief when she’s through.

That you’ve been given much shorter timescales than me suggests to me that the impact of her operation will be significantly less than mine.

I feel I’m painting a difficult picture but I think this is worse than you’ll actually see. I hope it helps.

Very best wishes

Richard


#3

@Babybugmama I am hopeful someone else will respond who has had facial avm. I too like Dick have a DAVF in my brain -
What I can tell you is the drs tell you best case scenerio - 1st time I had to spend the night I had a small stroke which is always a risk. I did get a lot of pain in my occipital lobes but they were in my head for over 7 hrs mine was much more complex than they thought and I was still recovering from a massive rare unrelated stroke. so really different issues.
I am also allergic to the iodine used - so dont be freaked out if her hair falls out post this happens and will grow back.
she will probably will be in pain and have ice packs for her head and groin area and pain pills if they will provide.
She will also be constipated so get whatever products are safe for her age. My second angio/embolism I think I was in bed for at least 3 weeks and very constipated.
Keep us updated on how it goes. I am sure she is in good hands - I will keep her in my prayers-
Hugs Angela


#4

A post was split to a new topic: New And Lots of Questions re DAVF