I’m sure some of you will have seen my other posts on this forum and may know a little about my situation but I will briefly explain. My girlfriend had an AVM rupture about 3 and a half weeks ago now and has been awake after her surgery for around 2 weeks. The brain bleed also caused 2 strokes which is obviously not helpful. She isn’t quite strong enough to properly start therapy yet but they’re hoping to move her to a rehabilitation unit and to start therapy some time this week. This is all of course good news, her speech has improved since since she first woke up and she is now able to communicate with us, speaking Finnish English and a bit of German. I was just wondering if anyone could offer me any information about how she currently is and whether it’s normal or not? Today was the first time I was able to call her since it all happened and of course I loved it, to finally talk to her felt absolutely amazing. I could tell she was in there and that her thoughts all make sense and are the same as they always have been. She said the same things she usually would and made a joke which I can imagine her making before she had the rupture, so that’s all good. It wasn’t what she said that concerned me though, it was the way she said things. It was all very simple, as though she couldn’t have a proper conversation. She didn’t really reply to anything properly (kind of like she couldn’t process what I was saying sometimes) and everything she said was very short and like I said, simple. It was also as though she had no emotions (other than when she cried), like she couldn’t express herself. It was a little bit like talking to a robot. Like I said, what she was saying was very familiar, her words were just like normal which was great but the way she spoke and the sentences she formed were all very simple and emotionless. I was just wondering if this was normal or not, I’m hoping it’s just something she can recover from with help from therapy and things, but it was as though she was just extremely spaced out and it really upset me to see her like that. I could tell she was trying to tell me more, she was saying she loved me and she misses me and asking about my family. But for example, the way she asked things was like “how’s jack”. I would answer and she wouldn’t really acknowledge the answer she would just move on to her next question. I may add that she was given anxiety and sleep medication last night and she was very tired today, which definitely didn’t help. She can’t handle a phone conversation longer than a minute either really so there’s that too. I just really hope this is maybe quite common or something and she can recover from this, I really really love her and seeing her like this and seeing her unable to have a conversation properly really bothers me
Thank you for taking the time to read my post, it means a lot to me.
Hi Joe, There’s so many variables when it comes to AVMs I wouldn’t dare to predict “how long?”
I’ve had a similar experience with some of my severe seizures according to a friend that helped me. My memory is a blur.
The human brain is resilient. Of course there’s no guarantees but something tells me your girlfriend will get all of her speech/reasoning back. Try to be patient. She obviously still cares about you and your family. That’s big.
You might be able to make her mental recovery easier. You could say something like, “Do you remember how we met? The favorite part for me was…” or “Do you remember how much we liked the movie xyz because it was sooooo funny…” Little things like that could trigger other stuff you have shared.
Plus, since you appreciate her sense of humor you could tease her good naturedly and gently. They say that humor is a high form of intelligence. Stay positive if possible.
Best wishes, Greg
Joe, I cannot speak to your specific questions regarding rupture/brain stroke recovery. My daughter at age 4 suffered a spinal stroke during angiogram to locate fistula. She ultimately passed at age 6 of liver failure. I can tell you during her 2 years of stroke recovery - well it takes time and milestones in the early stages are slower. I remember spinal neurosurgeon telling us spine is very elastic and I will assume brain is same just from brain stroke recovery general awareness.
Hang in there my friend. I know it is very hard but keep believing!! It is just a moment in time. But, I know all too well it seems like clock barely moves at times. Day at a time is best cliche out there in my eyes. Stay strong & resilient. Love your passion & your girlfriend is lucky to have you. That is easy to see. Steve A,
Just be there -
I remember when I was released from ICU, I couldn’t exactly speak. I’d have moments where I felt like I just couldn’t say what I wanted. First time this happened, my wife rushed me to er.
Everything checked out fine - my, neurosurgeon stated it was a “miss fire” in my brain & my neurons had difficulty communicating. He referred to as my “new normal” - I experienced this for months after randomly. Sometimes under stress mostly.
She underwent a craniotomy? I know you mentioned she had a hemorrhage, but don’t remember which procedure she’s undergone.
Every case & every person is different. This is some intense stuff for a human to go through.
All that you described brought old memories of difficulties encountered as I recovered from an AVM rupture and neurosurgery MANY years ago.
First of all, it seems to me that what you describe in her speech and personality is very encouraging. She is very much like the woman she has been, with high cognitive skill and a sense of humor. It is very challenging for her now, as she begins her journey after the bleed (which itself is a stroke).
It is early in the road to recovery. As anyone here will tell you, the road is long and windy. But, she is off to a good start, considering all you describe. PATIENCE is needed by both of you. She has experienced a major assault on her brain and entire nervous system. The brain IS flexible in many respects, but repairs itself at its own pace.
You are quite concerned, as anyone so close would be. Be reassured that what you hear is “normal” at this stage. Her speech is short, but appropriate. She understands what you tell her. Her speech is somewhat “robotic”. Her brain is in some ways re-setting itself, cognitively and emotionally. Speaking of emotions, as days progress, she will most likely find herself frustrated. But, that is where therapy (speech, occupational, physical, psychological…) and YOU come in. This must be initiated early, slowly, gently. Work with the therapists. Devise a plan. Stress her daily accomplishments. (I still do this to this day!)
There is much to be thankful. It IS a tough road. But, it seems her is off to a great start.
I had an AVM rupture almost 3 years ago and a craniotomy to remove it 6 weeks later. I am also a speech and language therapist working mainly with adults who have had strokes so have experience from both sides. Everyone’s experiences are different and it is impossible to know exactly how each person will recover but it sounds like she is young and therefore will have a very plastic brain, able to make new connections and strengthen pathways. Often it can take six months for the fog to lift from the brain after a stroke. It is not unusual for someone’s processing to take longer, so give her time not just to process what you have said to her, but also to put responses together. Visual cues such as gesture and even writing key words could help. Getting tired is also very common so she will need to rest and get good sleep to let her brain recover. I still benefit from an afternoon nap 3 years on! Keep your language and sentence structure short and simple. Ask closed questions (eg would you like tea or coffee?) when she is tired. The rehab team will be able to assess her properly but just give her time and allow the fog in her brain to clear. It’s a marathon, not a sprint! Good luck to you both and she’s lucky to have you supporting her. Make sure you get lots of support for yourself too. Jo
Was the bleed on the right side? This is very common for a right hemisphere stroke. The limited emotion is a “flat affect” meaning she may have damage to the part of the brain controlling emotions. She may be processing information a little slower as her brain has been through a lot.
My suggestion is to be patient. Your girlfriend has survived a major life event. She like most of us will not be the same person she once was. Be patient and allow her brain to heal. With therapy I pray she can regain her speech, language, and motor skills.
-Avm survivor turned speech therapist
My son had an AVM bleed 5 years ago and spent 3 weeks at the CTI having undergone craniotomy. It took him a few weeks in intense rehabilitation to get back to walk and speak. Speech therapy continued for a few months. It was very important for him to have the love and support of his family and fiancée ( now his wife). So patience, love and therapy make a huge difference. Your girlfriend is young which is also very positive for recovery. People who suffered from stroke also feel quite tired. You can help her by interacting with her when she is awake and when she is better by reading and sharing movies. Good luck and the best of recovery for her
I’m so sorry for your loss. My daughter just barely survived her AVM rupture (extremely fortunate we live in a major centre because she was unconscious and not breathing within minutes) and her recovery was extremely difficult. I can’t imagine going through that and then losing your child instead of seeing them progress. Again, my heart goes out to you.
Such excellent information. My daughter is nearly six years out from a bleed that mostly impacted her cerebellum. I still need to ask simple questions especially when she’s tired.
Seeing how a loved one is after a stroke is very frightening. In general it sounds like your girlfriend is doing pretty well. Some patients take a much longer time to recover to the point where she is now or never get there. I think all signs are positive that she will make a very good recovery in her own time.
I’m going to recommend this resource that was given to me when my daughter had her bleed. Hopefully you will find it helpful too. Take care and much love from Canada.
@AllieG this is really helpful material, thank you!