Just looking for some support and someone else who has been through similar to us! My husband was diagnosed with a left frontal AVM in May 2022 when he was 30 and this was also four days after we found out I was pregnant with our second child.
He underwent gamma knife surgery in October 2023, however last Monday he collapsed at the end of his 5k run without any prior warning or headaches. He was taken to St George’s and put into an induced coma and they operated to remove the AVM and hematoma.
Just over one week post surgery and he is doing very well and is able to move his body, see and speak. He does seem to have a lot of confusion and short term memory loss- I’m just wondering if this will improve? He can’t remember what happened to him and is really struggling to grasp which hospital he is at. I know it’s still very early days but any advice would be great. Trying to juggle supporting him and our two young children is such a challenge.
I was in an induced coma for a week after my crainiotomy. The gamma knife was done a few months later. In between these surgeries, my wife gave birth to our first child. This was back in 1989. I don’t remember the first year after surgery. It was a difficult time for the both of us with recovery and newborn.
I was able to work as an chemist for 30 years after surgery… The doctors ran a test once a year to check on gamma knife progress. It took two years for the AVM to disappear.
Back then, there was no psychological follow-up. I did some tests about twenty years after the surgery with a neuropsychologist. Those tests helped identify the damages and ways to deal with it. In my case (and every case is different), I’ve had short term memory problems and aphasia (word speaking problems).
Really sorry to hear about your husband. He is very early in his recovery, and while my personal experience is not too similar, single bleed and gamma knife, I can say from my time here, recovery is a continuous process. He has had significant trauma between the bleed and surgery. After my bleed I had short term memory problems and speech problems (Aphasia) for a few weeks and it slowly went away, mostly. I still have a little aphasia but have adjusted. My thoughts are with you, and I am very interested to hear how he, and you, make out over the next while. Take Care, John.
Thanks for sharing and for the well wishes John. Pleased to hear that your memory problems improved.
I am already seeing improvements in my husband day by day which is reassuring. Patience is the key here I suppose!
@Lozmcp
Hi
My pathway was different but confusion and memory problems are recurrent for me.
Firstly though it’s very early so maybe try and park these issues for 3 months and then assess any issues.
Your husband may find playing kids games helps with memory. The kids may win for a while but hopefully he will recover. I had trouble playing snap or pontoon at first!
Think of his brain as a library, where all the books have been chucked off the shelves and mixed up. As he relearns things he puts that book back on the right shelf and then it’s always there.
Learning new things can be more tricky! It took years, for me, to be able to work again but then i managed 30 plus years.
Unfortunately it’s likely to be a journey on a rocky road for you both.
Hope the recovery continues
Tim
Thanks for the advice Tim, that’s really helpful.