Mum's NASAH and the future

[Cat Skinner]

Hi everyone. My mum is 54, a non drinker and non smoker. On 29/03/2015 she was sitting on the toilet when her speech began to slur, she began to fit and vomit, her whole left side drooped and stopped moving, her eyes could not focus and as the ambulance arrived she began to bleed through her nose. She was taken to resus. An emergency CT scan was ordered and they found she had a massive right hand side SAH. She was vomitingl lots including blood in resus and they managed to stabilise her and take her to a specialist neuro critical care unit.

Once in there she was put on life support, she began to open one eye a little and could squeeze her right hand and thrash her right leg about. At this point she had complete left side paralysis, could not talk or open her eyes properly however she could understand what we were saying and respond by squeezing her right hand. She even managed to write with her eyes closed and it was coherent e.g. 'thirsty','drink', 'in pain' etc.

We were told she would die earlier that day as they thought it was an aneurysm and that the bleed was too big. After an angiogram it was found that there was no aneurysm and it is believed her haemorrhage was as a result of hypertension. They told us she was stable and then a few hours later she was sent for another emergency ct scan as she wasn't coming round the way she should be. It showed swelling of the brain and so 20 minutes later she was sent for a right decompressive craniectomy (sorry if my spelling is incorrect!!) After this surgery the swelling did increase quite drastically in size and 9 days on it is still there.

She still cannot talk or move her left side at all. She communicates now with thumbs up and thumbs down. She conveyed the fact she has extreme pain in the right side of her neck. She still hasn't opened her eyes fully but she has managed to write a little again even without sight. She cannot open her jaw at all or poke her tongue out and swallow was tested with a small amount of water but she is not ready. The speech and language therapist has tested her cognitive abilities as have we.

She knows her name, where she is, what has happened, remembers the past, recognises voices and the small amount of faces she can see. She drifts in and out of sleep and it can be very hard to tell if she's awake of just not responding because of the lack of eyes opening. They cannot tell us how well she will recover and I am aware that severe disability could be on the cards. I am only 21 and feel so alone without her to talk to. I do not want to stress her so will not let her know I am so devastated.

I haven't read of any cases that are similar in terms of ages and severity and wondered if anybody has been through something similar? I know all brains are different and a prognosis is individual but just knowing somebody understands this and can maybe share their experience and recovery would really help my family and I to come to terms with what has happened and to maybe give us hope/an idea of what the future may look like. 

 

Thanks to you all and best wishes for your/your loved ones recovery 

 

Cat

[Winb143]

Hi Cat,

 

I was pretty poorly after SAH, I remember little bits but I was in cuckoo land (as I call it) until I had a shunt fitted as  I had hydrocephalus. 

 

I cried when I read your post as that's what my daughter went through with me being ill. 

After shunt was fitted my daughter squeezed my arm and said "Welcome back Mum" we both cried xx

 

I do hope your Mum gets better, I wish you well xx

 

Sing to her as that's what helped me.   OT's said to my hubby " best if you put her in a home,"  cheeky s*ds

Hubby said no way xx phew !!

  

I do hope both you and Mum keep your spirits high and never give in xx

 

All The Best to You and your Family especially Mum

 

Keep strength up and keep singing to Your  Mum xx songs she likes.

 

Regards

WinB143 xxxx

[Tina]

H Cat

A very warm welcome to BTG , my heart goes out to you, such a very difficult time for you and your family.

It is very very early days for your Mum, she will sleep a lot as that is how the brain mends after such a huge trauma. Just putting her thumbs up, concentrating etc will be exhausting. The fact your Mum knows her name and where she is, what has happened, remembers the past, recognises voices and faces is all very positive

You will find lots of information and friendly support here. Feel free to post any questions you have and join in the banter in the green room.

You are being very strong for your Mum, she must be very proud of you please remember to look after yourself and eat. We are always here for you, good days or bad ones.... you are not alone xx Wishing you, your Mum and family well.

Take care and look forward to hearing more from you.

Love Tina xx

[Louise]

Hi Cat

 

warm welcome glad you found the site.

 

what a terrible time for you sending you cyber hugs honey...

 

Yes please look after 'yourself' sending both your Mum and yourself warm wishes..

[SarahLou]

Hi Cat,

A warm welcome to BTG.

Such a shock for you and your family, you've come to the right place, your'll find lots of support, strength and understanding here.

It's very early days for your Mum, all the signs she's showing so far are very positive, knowing who she is and where she is, knowing what's happened to her etc.

Hold her hand tight honey, your strength will become her strength. Make sure you take good care of yourself too.

We're all here for you and your family.

Take care,

SarahLou Xx

[Daffodil]

Cat. So sorry to hear about your mum and so hard for you to watch and wait to see what happens next but I agree with Sarah Lou and Tina that it is promising that she is responding but every little thing and action is exhausting.

Your mum will be worrying about you too so don't worry too much about being strong for her, when I finally was well enough to have my kids come in ( they were much younger than you ) it was actually a relief to just know they were doing ok , yes awful to see them sad, worried, distressed but overall ok and that's all us mums really care about , knowing that you will be ok. So squeeze her hand and let her know that your there for her and you are ok.

Your mum is previously fit and well which will help her but it is going to be a slow time over the coming months as you begin to see what progress she will make but progress and improvement will come , have hope in that. My experience taught me that the brain has an immense capacity for recovery but it needs protection from over stimulation whilst it does. Your mum needs to be getting good nourishment ,lots of love, fluids, encouragement and time and you can help make sure she's getting all of that , and yourself too whilst you are at it.

Celebrate with her the small things you notice, surround her with reminders of what she loves. I had pictures plastered over my bedside of my kids so nurses and others could ask about them and point me to them for inspiration, I know she can't make out everything with her eyesight but it sounds like she understands. Very Gentle massage with safe oils is nice, my mum did my feet and hands for me when I was very poorly and it really helped comfort me but she checked with my ward and consultant first and avoided any cannulas etc.

The neck pain may be due to blood dispersing but if she is in lots of pain then be her best advocate and get them to investigate, like Win I had hydrocephalus and bleeds can occassionally cause rarer complications which may add confusion.

All Strokes are devastating in their impact but I have met some amazing people who have recovered from locked in syndrome and paralysis. My family were told I would most likely not survive and if I did would be severely disabled, I'm not, I'm not the same as before but you can't preduct anything so please take each day as it comes and keep hope and try to smile through the tears.

As things go on you may have more specific questions and hopefully that's where we can help as someone will have had that experience . Lastly I suggest you contact a local headway when you ready to ask for support and help, they have good experience and will help you find a local support network.

Best of luck and sending best wishes to you mum x

[ClareM]

Hi Cat

 

So sorry to hear bout your mum, must be so hard for you. I have a daughter the same age as you who is away at university. When I had my NASAH my sons were around with my husband but my daughter was on her own trying to understand telephone explanations. I know she found it very hard and I can only imagine what you are going through. Do you have any other support?

 

Mum is making positive signs but it will probably be a long road, you just need to be there for her encouraging all the way. One positive thing that came out of my ' event' is that I am so much closer to my children now, especially one who was always rather aloof, he is like a changed man!

 

Hang on in there and keep coming back to BTG as there are so many people here who understand and have the patience to listen to you. It's a life changing event, not just for your mum, but for you too so take care of yourself as well.

 

Clare xxx

[momo]

Hello Cat sorry to hear about your Mum. my bleed was extensive and my husband was told I might not make the ambulance journey (from 1st hospital to neuro unit).  My bleed was a grade 4 and I remember nothing of my following month in hospital. The recovery I've had from such a bad bleed has been amazing so stay positive.

 

My children were roughly the same age as you when this happened to me I'm quite thankful I don't remember any of it as they were truly devastated.  

 

Try to keep a note of your Mum's day to day progress and you will see how she is improving and she might want to read it when she is feeling better.  

 

I think its extremely positive that she is communicating with you, hang on to that.  Wishing your Mum all the very best.

[Macca]

Hi Cat,

 

A big welcome to BTG!  First, realise that now you have found us, you are not alone.  People on here will help you as best they can with understanding and practical help and advice where possible.

 

I had my SAH on 1st September 2010.  I remember virtually nothing of the rest of the year and well into 2011.  I was in a coma for a week and when I woke up I thought it was the same afternoon as when I went in.  It's a long, slow journey, with a beginning, a middle and an end.

 

They had to teach me how to put the kettle on, how to make a piece of toast.  They asked me some questions and I gave stupid answers.  For instance, they asked me who the prime minister was.  I said "Jeannette."  I don't know anyone by that name.  There were two women by my bed and I asked who they were.  One was my sister and one was my fiancee (now my wife).  I hadn't got a clue who they were at the time.

 

They asked me if I thought I could get up and walk.  I asked them what 'walk' meant.  Initially, I was only awake for a couple of hours a day, with no pattern as to when those hours were.  Four and a half years later I am still here and functioning.

 

What I am saying is, it is still very early days for Mum.  I was still very frail six months later but improving every day, little by little, bit by bit.  What Mum needs right now is time and the strength of your support for her.  Give her it.  her doctors will give her the medical support, but she needs the strength of those closest to her, to know they (you) are with her and that she is not alone.

 

She will be confused, frightened and bewildered at the moment.  She needs your reassurance and support.  You can best help her by being there for her and by exercising patience and tenderness until her own body recognises its time to slowly improve.  Every day is a bonus and every improvement a milestone.

 

It is very difficult for you, I know, because what you are at the moment is frightened, because your rock has suddenly slipped.  Now it is your turn to be there for your Mum, just as she has been there for you all of your life without question or conditions.  But carers need support too!  That's us!

 

Give her that time and support Cat - she deserves it and more than that, she needs it.

 

If you need support, then we are here for you!

 

Good luck and keep in touch!

 

Macca

[Carolynusa]

Hello Cat.  Very glad you found this site.  I know from personal experience how much help it can be.  What happened to your mom is a little out of my knowledge arena.  My SAH was different that what you describe.  I am SO sorry about your mom but very encouraged that she knows you and tries to communicate.  That's fantastic!  Don't feel alone.  Come here as often as possible and you will get the support and encouragement you so need right now.

 

Ask questions of your mom's doctor whenever you have concerns.  I found the nurses very helpful also and I saw more of them than the doctor.

 

It seems like you did all the right things in the beginning to help your mom get the help she needed.  That was great.  You were very smart to have handled the trauma the way that you did.  It's obvious how much you love her and miss her.  I agree with all posts above and would only add that you try to remember as each day goes by that recovery is inch by inch.  It adds up.  

 

Again - when you are feeling alone please visit this site.  There are always people here to comfort you.

Much love 

Carolynusa

[Cat Skinner]

Hi everyone, 

 

Thank you all ever so much for your kind words and your advice on how to help her. To those of you that replied with words on your own recoveries, thank you, they have given my family and I a lot of hope. Also, well done on overcoming your struggles and fighting to get back what at one point seemed to be taken away. You are all very brave. 

 

As you've all pointed out the signs of her cognitive understanding are good and we are so very thankful that's the case She has begun to open her eyes a little more and we are aware with all the swelling that it takes a lot out of her. She pretty much has someone by her bedside all day which should help her but when she needs to sleep we let her sleep. We try to keep things normal in how we talk to her and somewhat interesting (like the news) as she must be very bored.

 

I will start to make a diary of her day to day progress so that in the future she will be able to see how far she's come as I have lots of faith that she will make lots of improvement in her long recovery. They are currently aiming to bring her back to our local hospital before she gets taken to London for intensive neuro rehab. We have been informed that Homerton, Queen's Square, Northwick and Putney are the four that deal with this kind of rehab so now we just wait for a bed space. 

 

Thank you all again for such kind, supportive and helpful words. Very thankful I found this forum. 

 

Wishing you and your families all the best

xxxx

[Daffodil]

I was at queens square and can't fault the care I had there and the rehab I got plus great aftercare . im so glad to hear you are all finding a rhythm for now . Good luck. Hi to your mum.

[Cat Skinner]

Thank you for saying that. We are really hoping for there as we've heard such great things! May I ask how you are getting on now?

[Daffodil]

I am doing really well especially when my family and I look back to the early days. I was fortunate to be treated at queen square and got very prompt surgery and excellent care. We are all so different it's hard to compare how recovery is for one will be for another so ill stick to sharing my facts.

I was admitted with a grade 4 bleed and hydrocephalus and very poor prognosis given to my husband and family. i was 39. I spent a week / 10 days in HDU of which I have no recollection and a further 6 weeks in the neuro ward bring treated plus some rehab. I couldn't walk unaided , i had poor cognitive responses and required further surgery later in the year to place vp shunt which notched up another 3 weeks in queens but i was a regular visitor for a while and will be back for annual scan soon.

I was disqualified to drive for 13 months and needed help to care for my children and with most things when I got home but no house adaptations.

Three years later and I live independently with my family , do part time work for my understanding employers and walk every day, in fact I'm in Spain as I write this so things have really changed since that time.

Each of us are different, different injuries, ages , but time is truly the only healer together with hope.

I'm very different now, I can't do what I did or keep pace my old way, I rest frequently, I have low stamina , I lose words, I get sad and frustrated with myself but I'm here and improvement comes even now , not always at the pace I wish and not always easily won but it comes .

Feel free to pm mexxx

[Louise]

Good to hear things are a bit better, I went to rehab after hospital didn't think I needed it Oh! how wrong was I...

 

Diary is good idea from yourself & your Mum helps her know what has been happing and lets you see how things improve..

 

sending you both my best wishes.

[kpaggett]

Cat,

 

I was completely paralyzed on both sides, had a feeding tube, and couldn't talk (I couldn't even write, but could understand everything that was going on around me).  Now, I am walking, talking, and unless I tell people, they can't tell I had a NASAH.  It took me a long time.  Some recover better and some worse than I have.  I am 3 1/2 years post and still see improvements.

 

Take heart, she will be better than she is today...to what extent and how long, no one knows.  Just be with her in the present, and don't worry to much about the future yet.  As they say, take it step by step or one day at a time.

 

~Kris