Hello, Following my craniotomy and AVM resection in late November 2021, I woke up in the ICU, unable to talk and was subsequently diagnosed with cognitive communication deficits, or apraxia of speech/neurological stutter (not the only side effect of the surgery but definitely the worst one). I’ve spent a lot of time since my surgery in rehab, and I have regained a lot of my ability to talk. ’d currently describe my speech as unreliable but improving. Some days are better then others. I am interested in finding out whether anyone else has had this happen? How has your recovery been? I am keen to hear from anyone else who may have already been on this journey or is currently on it. Thanks !
Welcome to AVMsurvivors! I don’t remember who else has apraxia of speech but I’m sure you’re not alone.
You might use the magnifying glass at the top of the page to find other people with apraxia if you don’t get many responses. I would recommend a little caution for any very old conversations (pre 2017) as we moved platforms in summer 2016 and not everyone coped with the change, but you may not get much choice.
You’re very early in your recovery and that you’re making good ground with your speech is very encouraging that you should be able to keep improving for some time, I believe. November is really no time at all.
Very best wishes,
Hi - thank you. I’ve looked and there was no-one else who’d posted recently on this topic. Seems to be an uncommon occurrence. Even though my speech is much improved it’s an effort to talk still and it’s an effort that no one can see so they can’t tell how tiring it is. On top of the apraxia, I’m hard of hearing and wear hearing aids! If I don’t hear what people are saying I have to ask them to say it again and then I have to frame an answer that I can say clearly. I’m feeling sad and frustrated. I’m keen to hear from anyone who’s had or has similar issues, so we can swap stories.
I had a look, too, and I agree there don’t seem to be any recent stories.
One of the things you could do is go back to some of the older stories and if you see someone back then, click on their icon and then look to see the “seen” date on their profile. If they are still logging on, it will show a modern date.
Or, you could just message them to ask how they get on. It’s just less likely that you’ll get a response from very old posts. Happens, but rarer.
Very best wishes,
My daughter had an AVM rupture 5 years ago. She was 9 at the time, almost 10. She had severe ataxia at first. She was basically paralysed and then regained movement of her eyes, head, hands, shoulders etc. She didn’t speak at all for 5 months and then speech came back slowly. Her speech therapist initially described her speech as apraxia but then once she began to speak better, she said it was more characteristic of dysarthria. Her speech was laboured, breathy and very slurred. All aspects improved quite rapidly once she began to talk to the point where 8 months post rupture I’d say she was intelligible to anyone she wanted to speak to. While she was regaining speech she was also relearning to walk and eat so she had a lot going on at once. I believe she definitely benefited from being young. Well, her surgeon said an adult likely would not have survived the initial bleed so there’s that. I’m extremely happy to report that 5 years later, she’s doing very well. She still has some balance challenges and her speech is still a tiny bit slow and its tone is not quite the same, but I’d say her speech is 90% of what it would have been if she hasn’t had the bleed.
I hope you’re continuing to make progress You’re still in the first year so there’s a huge chance you’ll make progress for quite some time still.
I had a craniotomy in June of 2021. My AVM ruptured in the left frontal lobe of my brain, affecting my right side. My speech has gotten better with time, but there’s still room for improvement. Like you said, some days are better than others. When I really focus on saying the words right, I can, but my brain operates ahead so I commonly mess up or pronounce two words in one.
Best wishes on your recovery process.
Having to concentrate on saying the words right is so true. Sometimes the words are there and come out right and other times they just aren’t! Then it can feel like I’m trying to spit out marbles in a foreign language that I cant quite pronounce. It’s really frustrating. I used to talk fast and now am slow. I’m hoping i sound more thoughtful, but am worried I come across as rude - when its difficult to talk I may only say the really key words, like yes, or no.
Its good to know that i am not alone in facing these challenges. Its been difficult as, its hard to talk, so its hard to talk about it - ironic really.
Hi not been on here for a few years i had a ruptured avm in 1990 and had to have a very large surgery.
Sunt fitted also .
Was left with a lot of pain memory problems saying things all wrong getting things back to front .
Forgetting my children’s childhood .
That was the worst.
3 years later it happened again was told it had come back had gamma knife treatment.
I have learned to live with the pain and the memories of my children’s youth came back a good ten years later.
With every one i was in tears of joy .
But !! I am still here there is hope i have now seen my grandkids grow up .
Sending love and prayers .
Angela bell xx
Hello Hotspot, msngpcs, Dick D., and everyone,
I am an infrequent visitor to the site, but tend to keep up sporadically.
Since my craniotomy and resection in 2016, I have had a speech deficit. I had not diagnosed it as Apraxia, an articulation difficulty, but as an Aphasia, a finding-the-right-word-and-producing-it difficulty.
I have found work-arounds, like choosing a different word that is available at the time, but I do get “blocked” regularly when speaking.
Your mentions of previously being a fast talker, and now slow, and worry about coming across as rude rather than thoughtful-- these are very familiar worries to me.
Anyway, there are worse deficits to have. If you would like to to respond to me, please do (Hotspot, msngpcs, Dick D.) and I will talk (text) with you about our shared difficulties, and the ways I have learned to cope with them…
I have Aphasia too, although I have gotten better at finding the “right” word to use, producing it still seems to be the biggest factor that affects my speech on the daily. I don’t know about everyone (people with Aphasia & Apraxia) but texting is much easier to do than speaking.
I have to analyze the spelling & break it up into syllables when speaking. Say I don’t say the word everyday, it tends to become a lot harder & gives me more trouble.
I’d like to hear how you cope with Aphasia, pretty much anything helps.
Thank you, Danielle.
Good morning Danielle,
Writing is better than speaking, because it bypasses the whole production of… well, producing intelligible sound.
I find that I rely more on non-verbal cues than I did before, which is why I can find talking on the phone so stressful. But it also helps that I recognize my deficit, and if I find myself stuck on a word, then have substitutes as back-ups, and just switch to the next.
I found it interesting that your Category is “Frontal Lobe Member”… this is the first time that I have seen that. I too had a left frontal lobe bleed, and other than some trouble with simple mechanical tasks, my first symptom that something was wrong was when my boys got home from school, I couldn’t speak. This was in late May, 2016. My sons immediately called for help.
Thanks for getting back to me, Barry
It’s good to hear from you again. (I still remember your story of being discovered in the garden, inspecting the daisies at a close distance! At least, I think that was you). If you want to join one of the “Groups”, look on the three lines menu, top right of the page and you will find things like Brain Frontal Lobe etc there.
The Brain groups in general don’t “do” anything other than help people relate to each other but the groups for which we have a category under “Types Of AVM” alert members of the relevant group to new posts in that category.
For the most part (in my estimation) the treatment of brain AVMs is very similar lobe by lobe, so there is no need for a special category for most Brain AVMs but for groups like the Spinal patients, Extremity, Pelvic & Uterine etc, there is a space for people to write and this links to alerts for the relevant group.
Good to hear from you (and interesting to understand things like apraxia and ataxia)!
I have difficulty finding the right word at times too. It’s often when someone asks me a question - say what do think or feel about x. I can struggle to say what I want to say because while I have my thoughts they don’t automatically translate into words, so I start sentences and then trail off as they don’t go where I wanted them to, or I have to say “that didn’t come out right” and start again. Writing is better then speaking!
I think for me, its only been 5 months since my resection but I think I need to find a way to make peace with the fact that my speech may never come back to what it was. And not try to force it, or judge my
self for it. Your saying that you recognise your deficit was really helpful.