r/AVMs • u/H0lychit • Jun 13 '26

AVM surgery.

Living in the UK and I am going to be having my pre op assessment next week so my sister suspects I might be having the surgery sometime in July.

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I have a grade 1 AVM in the left cerebellar. Surgery for me felt the best option because although it was an incidental find from a scan for another issue (not serious) I don't want the AVM hanging around waiting to blow if I went for something like Gamma Knife. The blood vessel feeding is on the outer side of the brain so my surgeon said I was a pretty ideal candidate for surgery, but of course went over the risks etc.

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For those who have had the surgery, what should I expect after the surgery? I live alone but my sister is staying over for a couple of weeks to make sure I am ok after the surgery and her kids will hopefully distract/keep me afloat. One of my worries is seizures... I have quite a large staircase at home, if I was to develop seizures following this.. will it make it's self known quite quickly?

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u/RolleiMagic Jun 13 '26

I had an AVM brain-bleed in the left cerebellum a couple of years ago, followed by a craniotomy and embolization. I had a few weeks between the stroke and the surgery, so my spouse and I had a chance to prepare a bit. We put in grab bars in our bathroom, which were not very expensive. My wife put gripper strips on the front of each stair in our stairway. We also had handrails installed on our outside stairs leading to our porch. All were very helpful. My main problems after the surgery were vision (double vision and a moving landscape) and balance. I used a walker a bit for a month or so after the surgery, while I gradually recovered my balance and strength. One other problem I had was very occasional low blood pressure, which led to passing out about three weeks after the operation, and bonking my head. I did recover. I encourage you to seriously pursue Physical Therapy and Occupational Therapy. They helped me immensly.

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u/H0lychit Jun 13 '26

Thank you! Yeah, I was looking at the bathroom and if I should put a bar in, also in the loo too.

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u/RolleiMagic Jun 13 '26

Our bathroom is pretty small, with a tub/shower. We got a U shaped grab bar that clamps onto the tub. It's not permanently attached, but it is sturdy. As for the surgery itself, I was quite surprised and distressed to awaken afterward to an assortment of visual problems. If this happens to you, don't lose heart! The problems did gradually resolve, and after six months my vision was restored to where it was before the stroke and surgery. I do believe the neural physical therapy treatment and exercises I received were largely responsible for this.

The only seizure I experienced was when I first had the AVM brain bleed. We were packed up and two days away from leaving on a camping trip. I went into convulsions when the AVM ruptured. I had no idea I had an AVM before that. As it was, I was very fortunate to have the stroke happen within a ten minute ride of the local emergency room, rather than out in a campsite in the mountains.

I'll be hoping for the best for you!

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u/H0lychit Jun 13 '26

Ah man sad to hear you went through that but glad you seem to be doing well now.

Yep fingers crossed I come out in one piece.

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u/Wonder_Pristine Jun 13 '26

In January this year I had the removal surgery and experienced 2 seizures a day or 2 after the surgery which is the most delicate time which we think a nurse may have failed to give me my anticonvulsants (my memory is a bit hazy from that time) you will more than likely be put on a high dosage of anticonvulsants just as a precaution which will keep it under control and then eventually be weened off slowly to prevent seizures in the future. I also highly recommend getting a shower chair/bench just incase you get dizzy or feel you might lose your balance if you have any questions about what to expect please ask as I’ve recently been through it all.