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Kay

Kay - new member

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Hi, my name is Kayleigh and I had a SAH on the 6th of March 2017

 

I’m still very much trying to come to terms with what happened, most of the time it feels like something that happened to someone else, that it’s not 100% real for me yet.

 

I found out about BTG from ‘A Dented Image’ by Alison Wertheimer, which I’ve found extremely helpful.

 

Ok, so on Monday 6th March at 7:30 in the evening (a time and date I think I won’t ever forget) after rather stupidly slicing my finger open on a tin of chicken soup I pass out in the kitchen. I have no memory of the event and what happened next (which in hindsight I’m quite thankful of) as according to my Fiancé I was seizing on the floor with my eyes rolled back, one arm sticking rigidly up into the air, half of my face drooping and being violently sick (I think these memories may have scarred him for life)

 

I’m then taken in an ambulance to my local hospital where I have a CT scan, apparently I’m awake at this point and answering questions, but I have no recollection of this. The first doctor to see me says they can’t see anything on the scan, that it’s just concussion and tries to discharge me, my Fiancé is not happy with this and so has a talk to the nurses there who are also not happy with that decision and refuse to let me be discharged, another doctor then comes on duty and has a look at the scan and immediately has it sent over to Queens Hospital for their opinion, who ask for me to be blue-lighted to Queens.

 

 

...... I’m actually finding this really hard to write about, there’s just so much, it’s hard to judge what to include, what to leave out, so for now I’m just going to post what I’ve written up to now and follow up later with the rest

 

Updated on 14/01/2018

 

I realised earlier today that I'd never completed this. Thankfully I found my notes so this is my original SAH part 2

 

The CT scan I had at Basildon apparently showed that I had blood on the brain. I wake up the next day in Queens Hospital, I’m not at all surprised by this, and my immediate recollection is of cutting my finger open on the tin the night before. My memory of the following week is very fragmented.

 

At first it was assumed that I’d passed out from cutting my finger and that I’d then hit my head and that was what had caused the bleed. That my brain would then just absorb the blood and I’d be able to go home in a few days.

 

I didn’t eat much in the first week, everything tasted foul to me, especially this jacket potato I had (having read up on it I realise now that the bleed had temporarily affected my taste buds)

 

I had an angiogram on the Wednesday to check that everything was going ok.

 

On the Friday a doctor came in to tell me that they’d been looking at the angiogram and original CT scan and that they believe I had an aneurysm that had ruptured and that they’d like to take me in to surgery as soon as possible.

 

I remember feeling quite numb and calm about it all. I asked him if I could just ring my fiancé because I’m only half taking in everything he’s saying to me. He was lovely, he gave me his mobile to ring Joe and then he explained to Joe everything that was going on.

 

I remember before going in to surgery that someone came and marked a cross on the side of my neck near my jaw line so I was very surprised to wake up with a line of staples down my centre parting. They originally wanted to coil the aneurysm and that was what I was told they were going to do. I went into surgery on the Friday. They couldn't coil it though, at the time we were just told that the coiling failed.  I only vaguely remember coming round and being informed that the coiling hadn’t worked; I think it was something to do with the location of the rupture (it was very difficult to get to).

 

So I had to go back into surgery on the Saturday to have the aneurysm clipped, which was successful. (I only vaguely remember later being told that the aneurysm could only be partially clipped because of these blood vessels coming out of it). I don't know if it was the double dose of anaesthetic in such a short space of time, but I don't remember the time in between the surgeries.

 

I was very groggy for the next week. Apparently I repeatedly asked things over and over again (I don’t recall this at all). When I woke up I kept asking over and over again about the staples in my head, I do remember being very curious about them, I just wasn't expecting them to be there and so was utterly confused and fascinated by them. 

 

I found it very hard sleeping in the hospital, even as a child I’ve needed complete darkness and silence to sleep (I can’t even have a ticking clock in my bedroom) so sleeping in the hospital was a nightmare for me I had ear plugs and a sleeping mask. The sound of the drip was driving me insane, so one of the nurses figured out for me that if I drank 5 jugs of water a day then I wouldn’t have to have the IV.

 

I also recall that my sense of time completely went out the window; 10 minutes felt like an hour, it was so bizarre trying to keep track of time.

 

I had to wear sunglasses most of the time because the light hurt my eyes, I could barely open them 

 

The side effect of the Nimodipine was that I felt warm all the time (this just happened to coincide with a very warm March) so I was constantly asking for the window to be opened, one night the wind was blowing so strong that it brought the blinds down, and so of course everyone was joking with me for ages that it was my fault.

 

Now I have suffered from anxiety for a long time, I've even been on medication for it, but I was the calmest I have ever been, which I thought at the time was strange because this is probably one of the most stressful things that's ever happened to me. But I was completely calm even serene. After watching Jill Bolte Taylor’s TED talk I now understand possibly why this was the case. 

 

I was discharged on the 24th of March, which means I was in hospital for just under three weeks.

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Hi Kay :)

 

A very warm welcome to you and your Fiance.

So pleased you found BTG, you will find lots of helpful information and caring friendly support here.

 

Thank goodness your Fiance and the nurses did not let you be discharged and you saw another Doctor. So often we seem to be misdiagnosed !

You are still in the early stages of recovery, how are you both doing?

 

Wishing you well with your recovery.

Look forward to hearing more from you.

 

Take care

Tina xx

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Hi Kayleigh

 

You've done very well to put down as much as you have.

 

I too apparently was answering questions in A&E etc and have no recollection of this at all.  

 

Well done to your fiance for not letting them discharge you -  I have my hubby to thank for his quick reactions too.

 

You are very early in your recovery so everything will feel very strange and disconcerting at the moment.  Take your time, get plenty of rest and drink plenty of water - we'll be here when you're ready to give us a bit more information about you and your experience.

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Hi Kay,

 

I never keep anything short but this time I will.

 

You are in early days of recovery, take it easy and don't push too hard.  Be kind to yourself.

 

We are not alone in this, and any worries you have type away as we have all been there xx

 

Look forward to hearing about your progress soon xx 

 

Keep stress at bay my surgeon told me,  so I sing when feeling down/stressed.  Arghhhh !! ha ha

 

Good luck

Win xxxx

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I feel so lucky that I have such an amazing fiance, he's been so great, he does find it really hard to talk about though.

 

I'm doing good most of the time, there's good and bad days.

 

I actually have my first follow up appointment this Thursday, which is both in turns nerve wracking and a relief, I have so many questions, I have read through my discharge papers so many times and it's all just gobbledygook to me.

 

Thanks x

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Kay me again lol

 

Told you I never keep anything short lol xx

 

Write down any questions you want answering,  because I have bad short term memory and I forget what I wanted to say , if you have this make a list xx

 

Good luck and hope all goes well for you .

 

Win xxxxxx

 

 

 

 

 

 

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Ditto to what the lovely Win has said about writing down any questions you may have so you dont forget any ;) 

Hope your follow up goes well on Thursday and all your questions answered.

 

We also have carers on here that have been through alot like your amazing finance and can relate to how he is feeling. 

 

Take care

Tina xx

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Welcome Kay

 

i pray you recover quickly. I was answering questions for 3 days that I don't recall. I also thought it was 1987 for some reason (it was 2015).  

 

I ditto the remarks to write things down as memory may be challenging for a while. When I was in ICU I wrote down 4 decent questions to ask the doctor. I also had a 5th question which was "Will I get superpowers?"  I kid you not. 

 

Beat wishes for you and kudos for your guy for being there. 

 

Chris

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Hi Kay,

Welcome to BTG you have come to the right place for help and support, as Tina said we have member's who are carers and I'm sure your fiance will benefit from this site also.

 

Like the others have said, drink plenty of water and make sure you get plenty of rest, your body and your brain have suffered trauma and they need plenty of time to heal.

 

You will find lots of useful information here that will help a lot to alleviate some of your worries, you will also make a lot of new friends as you go along the recovery road.

 

We are all here for you both,

Wishing you well on your recovery journey.

Love

Michelle xx 

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Hello Kay, also a warm welcome to BTG.

 

So glad you were able to find the site. As others have said, you will get much help and support from reading the various threads and from the responses of our members.

 

Three months on is early in your recovery. It is so important that you don`t try and get back to `normal` as quickly as possible. Your brain needs time to adjust and heal.

 

Your fiancé did so well in insisting that the decision to discharge you early was questioned.

I was present when my wife had her SAH six years ago. It is tough in a different way for us carers as we deal with what happened and it`s consequences. Speak often to each other about your feelings and fears post SAH. You are both daily finding out how SAH is affecting your lives, and wondering what the future holds.

 

It is good that you are meeting with your consultant on Thursday. As already mentioned, write down all the questions that are upmost in your minds.

 

I wish you both well in your recovery.

 

Please keep in touch.

 

 

Subs

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Hi there

 

Warm welcome to the site, so glad that you found us.

 

I have no memory either of when it happened that's ok for me too...

 

Take things easy, listen to your body when your tired 'rest' and keep hydrated...

 

Take care

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Late response but welcome to site very early days in your recovery and you are bound to be both reeling from shock, it is very scary both for those of us who have suffered SAH and for our family and close friends.  I am pleased your fiancé and nurses were more vigilant and insisted on further exploration.

 

I wish you lots of luck in your recovery which whilst is hard it does get better.

 

Regards

 

Sharon x

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Hi Kay - welcome to BTG!

 

Hats off to your fiancée!  As some of the others have said, symptoms are often missed or mis-diagnosed and that isn't the best place to be, so well done to him.

 

As for the gobbledygook, ask at your next check up to have them translate it for you, and take a notebook so you can write things down so you don't forget.  Write down any questions you want answering before you go so you don't forget them either.

 

It's still very early days for you yet in your recovery so take your time and don't expect things to return all at once -they take time, patience and nurturing.  Sometimes when things go well, you can be tempted to overdo it a bit and your body will soon tell you it's too much or too soon, so be careful.  Enjoy the pleasure of doing everyday things, it's amazing what new respect and appreciation you will develop for them now!

 

Very pleased you have joined us - good luck!

 

Macca

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Thank you to everyone for the warm welcome, it's greatly appreciated

 

Well my appointment last Thursday mainly consisted of waiting for 2 hours to have my blood taken (which completely wiped me out) followed by a very short chat with a nurse.

 

I have a cerebral angiogram this Wednesday, at which I will hopefully be able to ask all my questions (which I have written down now), I've been told there's a high possibility I will have to stay overnight at the hospital, I'm really not looking forward to that, so fingers crossed I wont have to.

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Hey Kay

 

Try not to worry about the overnight stay I think that's just a general thing they put just to freak us out.

 

I will cross everything for you it'll be fine I've had quite a few...

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Hi Kay, welcome to the best source of support and friendship you will come across along your recovery journey.

Ive just seen your post regarding the cerebral angiogram and wanted to tell you 'don't worry', mad words I know, we all worry. When I went for mine,I was also told that I may have to stay overnight and ,like you that was the last thing I wanted.. Now, I know all hospitals are different and we are all different. This is not medical advice, just my experience..... I was told that I would be sedated for the procedure  so I asked " if I have it done with no sedation can I go home tonight?"  Answer was Yes. I felt no pain or discomfort.

 

I had a lovely nurse holding my hand all the time, explaining it all to me and answering my questions( she probably wished I'd been sedated, I can talk for.Britain)  Worse part was having to lay flat for 4hours before being allowed home.I hope this perhaps put your mind at ease a little, please let us know how you get on.

Take care

Jan xx

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Hey, thankfully I didn't have to stay in overnight (even though when I first got there the nurses in the outpatients section told me that I definitely would have to stay) but when I got down to the theatre the Doctor told me that I would be able to go home tonight, that I just had to lay flat for 4 hours before they'd let me go. I felt like communication was seriously lacking between the different areas of the hospital. Down in the theatre all the doctors and nurses were great, so nice, explained everything as they were doing it (I did actually have 2 cerebral angiograms before, whilst I was initially in hospital, but I only remember bits and pieces from them).

 

What wasn't so great were the nurses in the outpatients clinic, one nurse started questioning me on why I'd cancelled my previous angiogram appointment (which I certainly had not) and then she told me it was meant to be on the 10th of March and so I told her, well I was actually in hospital on the 10th of March having my clipping done and I have no memory of this particular day. Then she went through this long list of questions, one of which was did I have an ECG done, and so I told her I had no idea, she then starts rifling through the pile of notes pulls out this piece of paper, shows it to me, looks at me then says " there, do you remember it now" (in a very condescending way), I couldn't be bothered at this point to repeat what I had already told her about my memory of the first week in hospital being patchy at best.

 

I've noticed that this has turned into a rant, I am sorry about that, I just got really frustrated at the time, I guess I needed to let off some steam.

 

Deep breathes, calm down now, move on

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On 6/13/2017 at 15:39, Jan said:

Worse part was having to lay flat for 4hours before being allowed home.I hope this perhaps put your mind at ease a little, please let us know how you get on.

Take care

Jan xx

 

 

Hi Jan

 

I wish I'd have seen your post before I went in on Wednesday, it would have been a great help to know that, thank you anyway

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Kay that's a horrible way to be spoken to!!!!   OOOhhh I wish I'd have been there with you - I'd have given her a piece of my mind and that's for sure!!!!!

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Me too Kay, some nurses think they have the god given right to speak to patients anyway they want. Your probably won't want to but if i were you I would write in a letter of complaint to the department. Things will never get better if complaints aren't made about this type of incidence. They realy should be aware of memory related problems after this type of event.

 

I work in the NHS and know these things do get followed up, so if you feel inclined do put pen to paper.

 

I hope the results are ok anyway and that you are recovering well.

 

Clare xx

 

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19 minutes ago, Skippy said:

Kay that's a horrible way to be spoken to!!!!   OOOhhh I wish I'd have been there with you - I'd have given her a piece of my mind and that's for sure!!!!!

 

Lol, thank you, that made me smile

 

I'm going to put it down to ignorance about SAH on her behalf.

 

I might look in to making a complaint actually, as you say Clare, things won't get better otherwise.

 

xxx

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Not worth you worrying about people like that Kay xxx

 

You have a life to live and you just worry about you  xxx

 

Glad all went well apart from Nurse, trip her up if you ever see her again lol j/k I think !!!  ha xxx

 

Good luck

 

Win xxxxx

 

 

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I believe that if you're caring for / tending to those with an SAH that you should be fully aware of the after affects etc.  When I was taken back into hospital 3 weeks after mine a nurse kept telling me to sit up in bed.  I told her I couldn't, she insisted I could.  I told her that I was rushed back in with another suspected bleed and to actually sit up was more painful for my head than I could describe.  She was mortified - she had no idea why I'd been brought back in as I was on a general ward.  She couldn't have been nicer to me for the three days I stayed there hahahaha.

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It is a terrible way to be spoken to but note they're not all like that...  and yes making a complaint it may make someone else that's far less able to cope than you did - help them..

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I had an appointment with my neurosurgeon 2 days ago (the first since I've been out of hospital).

 

I got quite a shock. I was informed that the aneurysm that ruptured has three blood vessels coming out of it, which meant that he could only partially clip the aneurysm so as not to cut of the blood flow to these blood vessels (I vaguely remember being told something like this at the hospital, but I just couldn't comprehend it at the time). 

 

Unfortunately the part left unclipped has grown. They need to do a test which involves temporarily blocking of the blood supply to these blood vessels, if this has no adverse effect then they can just coil it, otherwise they will have to go back in and clip the rest of the aneurysm.

 

I was not expecting any of this, I'm still in shock, but I did get to see some rather cool 3D images of the inside of the head, so it wasn't all bad.

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