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Mike26

23 year old son of SAH survivor

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Hi there, 

 

In October of 2017 my mum was making herself lunch when she had an SAH and brain aneurysm on the left side near her frontal and parietal lobe.  She was helicoptered to a major hospital, where they put in an EVD to drain the CSF from her brain. 

 

After multiple surgeries to coil, drain and fight infection...  She is currently in a slow stream rehabilitation center. She can now speak, answer questions with yes and no, as well as come up with hilarious one liners. She can read. Her memories of people are back,  she can finish sentences for you if you lead a question. Her humour is back. Currently shes a more disconnected, confused version of her old self. In some ways she seems more child like, but I also feel like she's her old self just with less of an ability to shield her thoughts... She can't walk and use the bathroom. She's dependent on the nurses, struggles to tell people if she needs the toilet... She told a nurse once. She is 57

 

I'd like to know if anyone has a family member or friend who has been in a similar situation, and how long they kept improving,  when did it stop?

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Welcome to BTG Mike.

 

Your mum is still in the very early days of recovery. There is no timescale for improvement, everyone is different. Recovery can take months to years in some cases. 

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Hello Mike

 

Your mum will never stop improving, it takes time and a slow pace for mum to get back into mode as such.

 

The rehab will could continue for months and possibly years, it depends on her stamina and support anyone can give her.  You will have ups and downs, but that's normal, I promise,  but the good days will take over as time goes on.

 

This is a marathon and not a sprint. We are here for you should you want to vent or have problems. Wishing you and mum all the best  xx

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Hi Mike,

 

I was out of it for a while, I got Ventriculitis, other germs then Sepsis.  None I remember !!

 

I played OT's up as felt they bullied me,  and I sang a lot, even on here.  But I found this site via my Daughter and it made me feel so much better after having a shunt fitted and that's when I woke up xx

 

Was told I'd never walk now 200 yards before back aches, but singing and speaking to others who have had the same is a blessing in itself.  Wishing your Mum all the best.  You tell her she is a survivor xxxx

 

Keep her happy and stress free, as it worked for me xx 

 

Good luck to Mum and you Mike xxxx  Never give up xxxx

Win xxxx

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Welcome. I m a gp in the US. But I cannot give med advice. It depends on many things such as mum s age, medical conditions before hand, current state etc. I would ask the neuro or neurosurgeon about the prognosis.

I have a 50 yr old young patient who had a severe stroke. He only had high blood pressure that is controlled, no smoking, no drinking, has a physical job(which can be helpful at times)etc. he can drive now but one side is weak and cannot work anymore. It took him a long time to recover with physical therapy and occupational therapy. But like win said I think family support is very important and helpful. Goodluck.

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Thanks so much for the support. When people say early days here, are there like different amounts of time in which most rehabilitation occurs,  or? 

She's at 5 months currently

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Mike it depends how bad she was and we know we can only tell you about us as we are not in anyway medics.

 

I was out for a year approx. Then OT's gave up on me and said to my Daughter "Say goodbye to the Mum you had and we suggest you put her in a home" Luckily my husband said "no, we'll take her home" 

 

They were trying to make me count and do things while I had really bad hydrocephalus, I never even remembered my Dad was dead !!  Anyway after shunt kicked in I awoke and sung a song to nurses lol.

 

After that it took me a while to remember where I lived but I am glad all has gone right for me and my family and all is well in my head..ha ha.  Apart from aches  and walking long distances etc. I am okay.

 

Slowly does it and reminders of what used to be helps. xxxx

 

Hope Mum gets better and it makes me wonder how many people have hydrocephalus and are sitting in their own water filled head, as I was for approx. 1 year.

 

Love to you both

 

Win xxxx 

 

 

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1 hour ago, Mike26 said:

Thanks so much for the support. When people say early days here, are there like different amounts of time in which most rehabilitation occurs,  or? 

She's at 5 months currently

Nothing is set in stone about anything to do with SAH.

Every individual is different. Rehab may have to be pushed for in this day and age. You need to talk to the doctors and if necessary fight your mum's corner for her.

Just look at Win's story, how she was and how she is now although her hydrocephalus didn't help in her case.

Your mum will have to have a positive attitude and  determination to recover the best she can for rehab to work.

 

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2 hours ago, Mike26 said:

When people say early days here, are there like different amounts of time in which most rehabilitation occurs,  or? 

Mike, as has been said, nothing is set in stone and one person's recovery will differ from the next.  Age, health, fitness, severity of bleed are all factors that must be taken into consideration.

 

I was 35 when I had my bleed.  For ages I felt like a fraud on here as I was walking two days after my operation and back at work 3 weeks later (although sleeping during the day).  A bleed is a bleed, we are all on the same road to recovery, it's just that some of us will reach the destination quicker than others, but this doesn't make it good or bad.

 

Encouragement and support are the things you can give your mum right now.  The brain will take far longer to heal than other parts of the body as it never truly rests.  Plenty of fluids and rest when needed are good things to remember.

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Run out of likes but agree with Sami and Super xx

 

Mike as a carer you need all the strength you can muster as we can be hard work, but we need you to help us.  I remember my Daughter saying "Welcome home Mum" when I awoke from shunt being fitted.  

 

We both blubbered but they were tears of happiness as she had her old Mum back and I had my baby back xxx even though she is 40 lol ..

 

I also remember her making me touch my fingers so I got movement back in my hand.  Never give up on Mum she is there just keep at it  xxxx

 

Win xxxxxxxxxxx

 

 

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Hey Mike. Sorry to hear about Mum, sounds like she’s had and is still getting good care , How are you doing? It is a big shock and adjustment to the family too when an event like SAH occurs. 

 

You asked 

On 3/24/2018 at 12:04, Mike26 said:

how long they kept improving,  when did it stop?

Everyone’s extent of brain injury post a bleed and surgeries is different so you can never fully predict outcomes or results but I personally think that change post an injury doesn't ever stop. I am six years out now, my prognosis post a bleed was poor indeed and doctors reluctant to predict any sort of return to activities at levels I had done previously , it felt like being hit by a truck and my world was unrecognisable  but time passed and I have regained much and even in the last months I have noticed a little more stretch of what Is possible for me and I am stubborn in my goal of Exploring and regaining. .  

 

Everything and everyone is different in a bleed. I have been fortunate and regained many functions and have similar levels of cognitive ability now to pre SAH but not entirely. It’s like someone came in and rewired  everything , so some switches work, some are back to front and some i know it’s  not safe to push...sorry if that’s a daft analogy  but just trying to say that for mum the greatest healing and improvement will come with time but also with curiosity of possibilities; can I / she do this? what Help do I/ does she need to try it?

 

Main thing is notice her intent and desire for what she is exploring and if you think she’s going backwards then that’s the time to advocate for her and investigate why .  

 

 

People remark how each time they see me they recognise  more of the Old Daffodil. I replied maybe it’s  just more of the new one but they are right,  I know my limits better today but equally have more stamina to try things and with that comes more confidence and familiarity but also acceptance in who I am now which can’t be the same as I was.

 

So when does it stop?. Never I hope. It creeps along,slowly, invisibly ,sometimes with a leap , sometimes not in the way you want but it will change and evolve.

 

Sounds like mum has humour in her arsenal , that’s good and will Help her and you. 

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