Daughter of AVM rupture survivor

Hi everyone,
My mom who’s 64 y.o. found out she had an AVM on 4/9. It ruptured on 4/23 and had brain surgery to remove it on the 4/29. Her neurosurgeon is amazing, he got it all. She is still in ICU and has developed ICU delirium. She also had some swelling after and now has a draining tube in her head. She’s doing ok but I was wondering how long this ICU delirium will last or what everyone’s thoughts were? I think this is the hardest part for me. She’s such a strong woman, but I just want to talk to my mom :pleading_face:

1 Like

Hard to say,

And welcome to the board

We’re all different, specially after a rupture/hemorrhage. I had one(actually a couple) & I’m fine, so far - but I’m young(er) and, like I said - we’re all different

Just do your best to be there for her as much as you can - this stuff is as frightening as it gets

2 Likes

ICU delirium isn’t unique to neuro pts. Other patients with chronic conditions have also experienced and recovered from this transient condition. I think the stress of constant checkups and beeping buzzing sounds/noises of the unit can make a pt simply shut down and temporarily ‘lose it’ as a coping mechanism while they recover. GK

4 Likes

Welcome to the family and glad to hear your mother is doing well… ICU can vary depending on the patient and the extent of surgery completed. As you can appreciate everyone is different on recovery times and there is no clear cut answer… I can tell you I was in ICU for 2-3 days after my surgery as they want to monitor and make sure everything is okay pending how much attention you require… Its a waiting game but before you know it she will be out and talking with you like nothing happened… God bless!

2 Likes

@Avmdaughter Welcome and I am so sorry about your mom. My story started out different with 5 blood clots in my brain and having a massive stroke (CVST) and I was in a coma. When I woke up I thought I was in Maui. Mainly because its true you can hear everything when you are in coma. My husband had the news on and it was after the Japan earthquake (March 2011) and we were supposed to go there but had cancelled - but on the news they were talking about it and the radiation so I thought I had radiation poison and I was terminal because I heard my room mate was terminal. I also has swelling on the brain and I will be honest with you its extremely painful.
With the hospital staff changing every few days its scary cause you dont see familiar faces so having a family or close member there most of time really helps keep the anxiety away.

My advice is to not have the news on at all. To talk directly to your mom. Tell her what has happened to each day.
Ask the dr if one side of your moms was impacted. - If it has - say the left side -since the brain crisscrosses for the eye sight talk to her on left side- also for me I couldnt really watch reg tv I preferred watching the old black and white movies. If your mom is having issues speaking try having her write instead its a different part of the brain.
Also look into a pregnancy pillow for home the kind thats a long U shape - you can find them on Amazon. She may have proprioception issues - Also when she is home keep her well hydrated.
One thing that really helped me in my recovery was coconut oil. My husband started to put 1 tsp in my coffee or tea a day and then after a few weeks he would give me another cup so I would have 2 tsp throughout the day and after another few weeks I would be up to 3 tsps throughout the day. Coconut oil has naturally anti inflammatory . We also need good fat and protein for our brains to heal. Such as coconut oil, olive oil and Butter like Kerry Gold Butter that is from Grass Fed Cows. My pain neuro from Stanford says to start our day with protein.
I think maybe part of the issue is that her brain is swollen so hopefully as that gets better she will start to process things better. Right now her body and brain are in protection mode -
She is in there fighting trust me- Talk to her - Are they letting you visit her? If not they really should this will only help her.
We are here for you -
Hugs Angela

1 Like

My moms delirium lasted for about 3 months granted she was only there for 2 weeks and then was quickly transferred to in-patient acute rehab facility for 2 months. Due to covid restrictions I wasn’t really able to see her.

When she finally came home it lasted about 3 months. I had to remind her she was home everyday and I always introduced myself before entering the room to let her know who I was and so did my dad. It gets better over time.

4 Likes

Thank you everyone, your replies mean a lot. She is still in ICU, making this week 3. Still has swelling on her brain they want to watch and make sure it goes down. She still has delirium and aphasia. It will be a very long recovery, but I have faith and am there everyday.

2 Likes

My son now 17 had his one year anniversary last week but after being in ICU for 20 days when they woke him up he was hallucinating for 2 weeks it was so shocking so this is normal?

2 Likes

The doctors say it is, because of the surgery, swelling, frequent neuro checks in ICU and messing with her Circadian rhythm. Very hard

4 Likes

When reviewing this post, I think I may not have not been clear in my response. When I say ‘not unique to neuro pts’ I mean the delirium is seen in a lot of other chronic icu pts, not only neuro pts. Whether surgical patients or not. GK

1 Like

Thanks Greg, I’m learning more and more about ICU. I never knew, I’m an LPN currently and a year from graduating with my BSN, very interesting to learn about the ICU. My mom seems to improve tiny bits daily. Thank you for your insight and response!

2 Likes