The First 48 Hours - just a blank!!

[johntaras]

When I read all the stories posted I find it hard to come to terms with the fact that I have no memory of my SAH. A lot of people talk of a bad headache and a popping feeling in the back of the head. They talk about each stage of the initial investigation with such clear recount.

I know that I have already mentioned this in my story but I find I need to ask questions of my family and get more details of what went on during those first 48 hours.

I remember getting up at about 5-30 as normal for breakfast and then going back to bed for another hour. The rest is gone for about six weeks. For the rest of the day I was being sick and getting more unresponsive.

When I was finally taken to the hospital that evening they did not know what was wrong with me. After about an hour they decided to do a CT scan to eliminate a bleed. But they found that the top of my head was just full of blood. I had a major bleed and an additional bleed behind the left eye. The doctors came and told my wife and daughters that I was seriously ill and that they would contact Stoke to see if they would take me. The outlook was not good and they did not think I would survive the night.

Luckily for me Stoke said they would take me, and I was sedated for the journey. Before they took me into theatre my wife and daughters were asked if they wanted to come and see me. The outlook was not promising. At Stoke the operation was carried out to insert a drain. I don’t know yet what happened to the bleeds how they were stopped.

I came out of theatre after about two hours and the doctor came and spoke to my wife and daughters. He answered all their questions but said that I was very poorly and the next 24 hours were important. I was kept just outside of the theatre doors for the next 24 hours. My wife saw all the people going in an out of theatre while she kept watch by the side of my bed.

The next day they tried to bring me off the ventilator and reduce the sedation. But I did not breathe on my own; they had to put me back onto the ventilator. The doctor told my wife that this might be about as good as it might get.

My condition varied over the next three weeks before I began to improve.

What is difficult to come to terms with is the total lack of memory to an event that so nearly finished my life. I know that it is perhaps a good thing that I do not remember the bad times. But to come to terms with the event is difficult because I do not remember. I am relying on peoples stories of what happened. I know that it is a miracle that I am here able to write such descriptions, share such stories with you.

It is little things that have gone, my memory has been affected, and I forget recent events. If I had been left with more prominent side effects it would have been easier to relate too.

I am constantly aware of my shunt on a daily basis. When I wash my hair and dry it I have a strange feeling for a little while afterwards.

I said to Julie the other day that if I had not recovered I would not have known what had happened due to my unconscious state. That was quite a chilling thought. But I have survived and get great pleasure and support from my involvement on a daily basis with my blogs to BTG.

Thank you to all the people who have replied to my blogs.

[Tina]

Hi John

I can empathise with you big time.....i also cannot remember what happened from when i was rushed to hospital.....to when i came home. I have to ask my husband and family constantly to fill in the blanks. I have not written my story yet, like you would need to sit down with all my family and close friend.

I also have short term memory problems and cant multitask like i used to. I get very very tired....i was always full of so much energy !

I find it very hard sometimes to come to terms with the new me. Thanks to a wonderful surgeon you would never know i had a craniotomy and have a metal plate where my cheek is and on the side of my head...like you, i can feel it, and the screws. My eye brow still does not work...but that is a small price to pay

It is still very early stages for you....i used to and still do get very frustrated with myself when i cant do what i used to, let alone all the emotional side you have to deal with. All i can say...is what Karen from BTG always says.....'don't be so hard on yourself and always listen to your body' ...very wise words

Like you...am very glad to be here and cant thank BTG enough, and all the wonderful friends i have on here.

I wish you well John....you should be very proud of how far you have come and what you have achieved.

Take care

Love Tina xx

Edited April 12, 2010 by Tina
typo lol !

[johntaras]

Thanks very much Tina, it makes coping with things easier when you have people who have been there to share with. Your family have an important role to play, but fellow sufferers help enormously, like you just by taking the time to write a reply.

[KelBel]

Hi John

I am not able to relate entirely to your situation, although I can empathise with the fact that it must be very hard for you not to be able to recall or piece together everything that happened to you.

I can recall quite a lot of what happened to me, however I had a grade 1 bleed so was not in such a severe situation as you were.

I can also empathise with the fact of not having been left with prominent side effects - which is a blessing of course, as that would make life a little harder too.

I hope you manage to sit down with your family and fill in a timeline of events to aid your emotional recovery - did anyone keep a diary that they could share with you?? That would be great if they did.

This is an amazing site and we are so lucky that it has been created; for us to be able to relate to each other, help each other, and get to know each other is so helpful to our healing process. There are wonderful people here, on hand (or online...) to help when needed (I think only amazingly wonderful people are allowed to be here actually )

You have done remarkably well, and it is a pleasure to know you!

Take care

Kel xxx

[Louise]

John I have totally no memeory of before, during or after, I still have no memory of it.

things that happen now only stay with me for a little while and then there gone too, I know its frustrating I got so angry at times when I cant remember stuff......

I totally rely on other people to tell me stuff about me, too, and I used to be very caunsious about the shunt and tube, time does solve this....

But Im glad that I dont remember, all the pain and stuff its your way of shielding yourself......just be glad that you've survived......

You should ask about councelling it really helps......any questions I'll answer if I can.....

[perrycornish]

Here you go John, I'm another one who can't remember, I have asked questions of those who knew me, especially my partner. I felt guilty as she obviously had to face the whole thing without my support as I was 'absent to say the least' I still don't actually remember much, just tiny realisations. In many ways I feel lucky, I only heard of the horrors and have no memory of them. It is I think quite common, especially in those of us who had a sort of sudden onset.....Bang! just like that, one minute fine next time for me anyway ( two weeks later and in a high dependency bed. Very puzzling. I have not as yet written my story (two years later) as I feel I am still gathering information. So don't fret, you are not alone and if you think about it, maybe it's a really good thing not to remember, it doesn't sound much like fun does it? The aftermath is enough for me I reckon:-D

[paul99]

hi john

i think i understand how you feel and the fact that you have no memory of what had happened to you

i will try and answer some of your questions firstly some people suffer a slow release of blood into the cavity surrounding the brain these are the ones who seem to have recourse and remember events as they happen although the event is traumatic its because of where the bleed is and the strength of the blood flowing into the skull and the increasing pressure which sometimes where the bleed may be brought under control by the natural compression of the blood flow by the skull like a hand over an open wound compressing the flow hence people who then have recourse to remember what happened ie the headache flashing lights and other symptoms leading up to the admission to hospital

there other like you and lin who had such a catastrophic bleed lin screamed my head then bang which sounds very much like yourself you have made a remarkable recovery and i think when you see your neurosurgeon again ask him where the bleed was which i think will answer most of your questions

i think its the standard answer by the neurosurgeons he or she is very poorly they also seem to take the view the out look is not good this is because the drs just don't know how anyone with brain injury will recover as it is the unknown quantity

i think you may have been either coiled or if you had a crainiotomy then you would have been clipped as lin was her skull is still in her tummy i spent quite some time in recovery and in miu and it is still vivid in my mind when lin was taken to miu i was given a book to start a diary which i have kept up to date even now

its going to be very hard for the family to answer your questions honestly because they would have been traumatized by the events which took place and maybe trying to forget the events although they will still be in there memory i think the problems you have now with your memory and the forgetfulness will improve slowly but surely over the next couple of years its a slow healing process maybe if your wife joined in on btg she maybe able to relate how she felt and in turn relieve her stress and worries and in turn help you by filling in the gaps without actually talking about it face to face

im pleased you have survived because we are all the better for knowing you and wish you well in your progress to better health take care

[LUISA]

hello john

I remember absolutely everything which happened after my SHA and coiling and it really does not make me feel any better than what you express.

I recall vividly the moment I felt something like a creak in my neck/head when I bent down in the shower. I recall going to hospital the next morning as a just couldnt stant the pain. I recall being told I had a stiff neck and being medicated, well in fact the stiffness did disapear the problem was that the strong headache kept on and on. I remember going to the doctor after a week and being recomended to go to therapy , when it got to the 4th session my right eye was closed and with double vision, the therapist said to immy go to hospital as this for sure was not "normal". Forgot to mention that at some stage i felt a pain on my head just as if a knife had gone right through my skull.

It took me 2 weeks to get the right diagnosis and fianally get a CT done and the rest is the normal coiling procedure. The 6 days I spent at the ICU "conscious" where simply horrendous. 7 months later I still struggle with side effects (my right eye suffers from PALSY).

I dont really think knowing the exact facts will make you feel any better so suggest you dont worry too much about it. I would simply concentrate on keeping on with your tremendous reco very after such an experience and perhaps seeking some councelling to close some of the open psicological wounds, at least that is what i`ve done.

I also find that unless you talk to people who have gone through "this" its difficult to understand how we feel

[johntaras]

Thanks very much Perry, your story will come when you are ready.

Paul I had a drain fitted which was in for three weeks, Julie said it was blood coloured for all of this time. They did not perform a crainiotomy, just a burr hole procedure. I will ask for more details of the bleed when I next go to the hospital. Thanks for your reply Paul.

Hi Luisa, thanks for your reply, I have a trip to the Neuropsychologist on Friday which hopefully will help to deal with some of the issues. Sorry you had such a rough time before you finally got a diagnosis. I hope things improve for you, take care.

Edited April 12, 2010 by johntaras

[paul99]

john

please write down all the questions you want to ask to get a full picture of what had happened i wish you well for friday take care

[Louise]

Hi Momo, your kind of like me as time goes by you do think less and less about it, I found that just every now and then if something happens then its gone agian.

I found that I was still recovering about 5years in so dont think is this as good as it gets I did and there were lots more recovery taking place that I was just unaware off.....

[JayKay]

Hi John. I'm sure it must feel strange to not remember anything - however, sometimes I think you're better off!! Although I told my story in detail in that other thread, the truth is the first few days are quite hazy and there are big blanks. In fact, yesterday a friend came to visit, and my daughter kept coming out with more stuff that I didn't remember AT. ALL ! Apparently, I appeared totally awake and oriented, and answered questions correctly etc, but I don't remember all that.

On another note, my mother had a stroke 4 years ago and was in hospital 6 weeks before she got a place in a rehab hospital (this was in France, and the rehab place was amazing!). She doesn't remember the hospital at all, even though she seemed to recognise us and "communicated" with us. Her first memory is of the day she was taken from the hospital to rehab. I think she's made her peace with that, especially when we tell her she was in nappies and had c.diff etc. It was an awful time, and I'm glad she doesn't remember it.

I hope you get more answers, but I hope even more that you will be able to make your peace with what happened to you. We must remember we've been through life-changing events and anyone who hasn't been there can't understand. Luckily, we have BTG, right??!

Take care.

Edited April 13, 2010 by JayKay
typo

[Louise]

weird my first memory was going from the hospital to rehab hospital I was in a taxi and saw this Red dress in Next window and thought oh I like that, at once I thought I dont wear dresses as soon as it came to me it dissapeared.....

[lynz]

hiya, i have no memory of my sah at all ,i can only go one what my little girl tells me , i too find it very difficult to deal with as it was such a big event in my life and i cant recall it , its like having a dream that you just cant remember , i dont know if i fell and banged my head or my ani burst ??? i sometimes get scared in case it happens again cause i don't remember the symptoms . i too get very tired i have gone back to work recently for 1 day a week but im thinking of packing it in because im soooo tired after 3 years i think im just coming to terms with my sah and that i know im only 30 yrs old but i cant do what i used to .i feel very frustrated sometimes but then i remember how lucky i am to be a mummy and a wife

[johntaras]

Louise, Momo, Jaykay and Lynz thank you all for your replies. It really helps to hear other peoples experiences on something you cannot remember.

I spoke to my daughters today about the first drain the doctors put into my skull on the first night in Stoke. I could not understand why it was in for nearly three weeks. How did the bleed stop and where did all that blood come from. They told me that the doctors said that the drain was to allow the bleed to drain from my skull but also to allow for the cerebral fluid to drain because I lost the ability to absorb the fluid after the bleed. The bleed was so severe there was no other way of removing the blood. I apparently tried to pull out the drain after about three weeks, they had to put in a second hole and another drain to continue the task.

Lynz I understand what you mean about being tired. I have not returned to work yet but get tired if I do too much. I also have concerns about a repeat bleed. How did the last one occur, in the bathroom? sneezing? I do not know. I did not bang my head.

Momo I understand about the need to telephone family with the news, explain how serious it was at the time, say your last goodbyes in case I did not come through surgery. That is very hard to come to terms with because I don't remember anything. I have four brothers who were all very supportive but confused as to how quickly I could become ill. Two daughters who believed Daddy was superhuman.

People keep saying how early it still is, only five months, it is life changing but I know one certain thing, I am very grateful I am still here.

Finally Paul thank you for your really kind words last night.

[Vivien]

Hi John,

We all seem to be different, some remember, others don't, I remember bits, but only silly things, like thinking that the doctor looked like Gary Oldman and that the man in the bed next to me was a gypsy king! When asked if I had any questions about the coiling they were about to do I asked if I would beep when I went through an airport security machine

I think it is about coming to terms with what happened and accepting it and the person you now are. Which for me is still an ongoing process.

Vivien x

[johntaras]

Hi Vivien,

apparently I told the Doctor he would be okay after the operation as I was very good and not to worry. (role reversal)

I thought I was still working at the Sugar Beet Factory, they knocked it down two years ago. Also I was in a hotel, how much was it costing per room.

I like the person I have become , I am more relaxed. Thanks for your note.

[kempse]

Oh John I had to laugh at what you said to the Doctor - what a gem.

Not sure whether it's better to remember or not to remember really. I remember it all and my mind often goes back to that week when five times I was dismissed by the professionals - knowing myself that something serious had happened yet they couldn't see it... would imagine loosing a big chunk of your life, as you did, must seem very strange indeed.

But like you John, I am so glad to have been given a second chance.

Sarah

[lynz]

its funny what you said to the docs john , i was telling them i was up all night drinking vodka with a lady who was in a coma on the other side of the room oooppps i also locked myself in a cupboard and ate all my easter eggs people had bought me , i dont think i was a very well behaved patient.

[JayKay]

Oh Lynz, what a hoot!

I remember thinking (but don't know if I said anything) "you can talk to me in jargon, I'm a medical secretary, I understand!"....

Sarah - I'm so sorry you didn't get a diagnosis for 5 days! I am so grateful that I realised it was serious and TOLD the paramedics to take me to hospital. My daughter says the F2 who was looking after me seemed puzzled by what was wrong with me, so I am so glad she (or someone) asked for a CT scan. I remember them saying if the scan doesn't show anything we'll have to do a lumbar puncture and I was absolutely dreading that! Thank goodness, my scan showed the SAH so no need for LP. <shiver>

John - I always thought of myself as pretty relaxed, but definitely since the SAH I cannot see the point in some of the things people get agitated about. Life's too short - chill, man

[Angela1]

Hi John,

I laughed out loud when i read what you said to the doctor:lol:. When i went up to see Mark that night after he was coiled, the nurse said he was the patient from hell as he would not lie down and kept sitting up. she also said when he was moved from the HDU she would be putting a sign at the door saying he was banned.

[johntaras]

Morning Angela,

we did do some weird things when we did not know where we were. Apparently my wife would pull up the sides of my bed to keep me from falling out when she left after visiting. The nurses told her that I would crawl out of the bottom so it was pointless. They used to keep me near the Nurses station so they could keep an eye on me. This was after five weeks of inactivity and bed confinement due to my condition.

I thought I was in a hotel and asked her how much the rooms were costing.

Strange thing the mind !! :confused:

[Liz D]

Hi John

It must be difficult having no memory of you SAH. I remember most things and did find it hard to deal with the flash backs. But time really is our best friend. I remember others saying that to me and now 14 months post SAH I can see that they're right.

After my coiling apparently I took a disllike to one of the night duty nurses! I told my husband she moved my bed into the kitchen (my kithchen!) and was trying to harm me. Apparently I wouldn't let her come near me to give me my jabs! Because they coiled the artery I had tubes in the artery in my arm and my groin and needed a nurse by my bed 24 hours a day for 5 days and she was given extra shifts to do this! Bless her she came and spoke to me after they had reduced some of the meds and I wasn't so paranoid. She was absolutely lovely and I've no idea why I didn't take to her but she said it was most likely the morphine they were giving me!

Liz xx

[johntaras]

Hi Liz,

I do not have flash backs, in fact the more I think of things the more I am aware of how my memory has changed. I forget recent things.

Julie said that for several weeks I did not realise that I was in hopsital. I did not ask what had happened to me. She would leave me at night worried that I would be sad but then she looked and I was just looking up at the ceiling. I was unaware of my surroundings, and described them as either the old Control Room at the factory or a hotel room. I think things did not start to clear until a couple of days after my Shunt was fitted, this was about five weeks in.

But when I compare what I was like then to now I say a prayer and am thankful for the second chance.

[Liz D]

Hi John

My time lines are rubbish! I'll think something happend about 10 years ago when it was only 2 or 3, I seem to have lost reference points pre SAH. I also can forget things that have happened or conversatoins I have had. If I concentrate hard, I make a memory, but it can be tiring. It's when I do things automatically that I'm more likely to forget. I can still fill the washing machine and walk away. I come back and am confused why nothing has happened until it hits me that I forgot to switch it on! Friends will say "I do that" but I didn't before my SAH!

I also had times when I couldn't remember what had happened or where I was. It's a funny sort of confusion, I wasn't frightened just confused. After it happend a few times I knew eventually it would be all right. At first it would take a couple of hours before the feeling went away. But now it happens very seldom and only lasts a minute or two. Last time was a few weeks ago, on the bus coming back from physio. I couldn't remember why I was on the bus or where I'd been. But in the early days I would wake at night confused and that could be scary. I had to sleep with the light on and even now I have to have the hall light on, just in case!

I think of how I was this time last year and there is a world of difference and I'm still improving. You're still very early in your recovery but your doing amazing. As I said in a post to JayKay, I was only starting to stand in the shower and was still having difficulty walking down stairs and my bleed was a "significant" bleed not a catastrophic (phew that was hard to spell!). And yes you're right, thank god for second chances and wonderful families!

Liz xx