Hello!
I was wondering if anyone who had a craniotomy to remove their AVM experienced any issues with speech?
My boyfriend is having a hard time getting his thoughts into words.
Thank you in advance for the advise and input!
Hi Krisitna, I didn’t have a craniotomy, but did have a bleed and then gamma knife. I experienced a condition called aphasia after the bleed. Mine was relatively minor and improved with time and is pretty much gone, the odd time I lose a word but not often. There is a huge range of effects that can fall into the aphasia category.
Also welcome to the site, and my best to you and your boyfriend. Take Care, John.
1 Like
Hi KLarkin!
I still have remnants of my AVM in my brain. About 6% of the AVM could not be removed due to locations. Already suffered a relapse 16 years ago, which led to disability. There was considerable speech difficulties talking after the initial bleed clear up to 2 years after craniototomy. Could speak without difficulties until May 2001. Now I have all kinds of issues with my speech. The best way for me to remain in sync between my brain & what comes out of my mouth is to stay calm, relaxed, and think about each word AS I’m saying that word. When I’m talking to friends, I don’t worry about it as much. When I’m talking to to someone professional, I chose my words VERY carefully before & during, & replay the whole thing afterwards. I forget words just before I say them, that’s always fun. Because once that happens, it takes days to remember THAT word. Also have a difficult time reading more than 2 pages of text, keep losing my place & no comprehension. And I always know when I’m having a not so good day because I say something to someone and they get a puzzled look & cock thier heads to 1 side. I am practicing all the time, talking to myself about what is coming up and however the conversation MIGHT go, and that helps prepare ME for confrontations.
Hope this helps,
Skippy
1 Like
Kristina,
Wherever he’s got a bit of trauma going on, he’ll have difficulty. It is very early days and this can be a slow recovery.
I read the other day of someone who’d had a bleed, woke up in hospital post surgery to be completely speechless, paralysed and no idea of whether it would get better or not. I can’t think of anything worse, myself. But, they made a pretty full recovery – maybe 95% or 98% back to full health.
So… encourage him that he’s been through a big procedure and he will get better. Its a miracle if he’s better in a week or two but it can happen. More likely, it will take longer. Be positive and support each other.
Very best wishes,
Richard
1 Like
I’ve had craniotomy done. The reason my speech was injured is because of the location of the AVM rupture. I’m fine now it just took some time to learn again. Speech whys it was the same as your boy friends just finding the right words to say. Just give him some time and his brain will find it and reorganize its self. You could say it’s like your computer goes of because of a power outage. It will start back up but it just takes longer.
1 Like
Kristina,
How is your boyfriend getting on? I know it’s a long time since you first wrote.
Hoping the best for you both,
Richard
Hello!
Thank you for checking in.
After his surgery he remained in the ICU for about two weeks then moved to in patient rehab for a few days. After that we went back home to do more therapy for his speech and fine motor skills.
As of today, the AVM is 100% gone and he made a full recovery. No speech or motor issues and he is off his anti seizure medication.
He couldn’t have made a better recovery. Even the doctors were surprised.
Here is a link to his story that the hospital put together to promote Dr. Lawton
FANTASTIC!! I’m so pleased! Lots of love to you both. Do stick around and encourage the occasional AVMer that miracles can happen, or at least that dark times can turn out really good. Talk about make someone’s day. That’s blown mine away!
Thank you and very best wishes to you both,
Richard
I have to echo Richard, that is great to hear! All the best, John.
1 Like