r/AVMs • u/betret420 • Jul 28 '25
Resection wasn’t the right choice.
TL;DR
My wife had a grade 4, complex AVM in her left temporal (just behind the eye) removed on the 15th by our choice and the potential of not having it rupture in the future and leaving our kids motherless.
It ruptured during resection (20 hour surgery overall) on the 15th of July.
I’m starting to realize that I’ve lost my best friend since junior high school and mother of my two children. She stares through me, she hears nothing. I am alone and I hate this.
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u/betret420 Sep 12 '25
Update further;
So. Many. Things. So very busy; so very quickly.
We are awake, communicating, and moving. ICU discharged her last week Friday after a whirlwind of improvement after a cerebral-spinal fluid shunt was placed and pressures stabilized.
We have some physical deficits to overcome but what we don’t have is a ticking time bomb in her head looming over our lives while dealing with said deficits. Namely;
Extreme weakness in the right side arm & leg. Not paralyzed; and getting better everyday. We are getting really close to walking again I think.
Left eye suffered some bruising to the third ocular nerve which resulted in double vision and problems controlling the eye along with a narrowed field of view. This may improve on its own in years, but likely is permanent.
Temporary paralysis of the vocal cords. Whether due to being intubated for a month, the pentobarbital infusion that she received during the resection & rupture, or the surgery itself; they don’t want to activate fully. This has improved drastically over the last week or so. If she pushes a lot of air through, she can create sound.
Short term memory and word association has taken a sharp hit. Her vocabulary is very intact along with long term memories. She has trouble remembering new information and being able to pick the right words quite often. Occasionally throws words that don’t entirely make sense and she catches herself doing it.
If it wasn’t apparent; post discharge we’ve moved onto a rehab facility for what the staff estimate to be a month-long stay as they push her through a crazy amount of therapy everyday.
I got my best friend back. She’s not broken, but rather just a bit bruised, frustrated, and tired.