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Guest Nightingale

Hi all, I am Ali

My husband John had a ruptured Acom anuerysm and subsequent SHA on 13th October. The anuerysm was clipped on 17th. He was in Addenbrookes CCU for 9 days then moved onto a ward. We have been discussing moving him back to a local rehab unit (Cambridge is a 3 and a half hour drive from our home) and was awaiting a bed in Gloucester.

At midnight last night I took a call from the nurse on his ward who told me his condition has changed, and he was back on CCU awaiting a scan. All she said was he had stopped speaking but this is not uncommon to date and they have never acted upon this before.

I was told a doctor would call but heard nothing yet and I am simply too scared to go to the hospital. I suspect another bleed but wasn't expecting it on day 22 - he was on good form yesterday. I know I shouldnt just make assumptions but I really am frightened. I've been really strong up until this point.

I have mainly been here at the hospital alone as friends and family are so far away.

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hi ali

please dont be frightened i know its easy to say if anything had happened you would have had a knock on the door by now my lin had me on tenterhooks for weeks after her sah many minor things could have happened and it may have been more suitable for john to be monitored on ccu the scan machine may have been in use and for the reporting person may want to talk to the dr first if it was a major incident you would have had the phone call its hard at the moment please dont think the worst go in with a smile on your face even though it maybe false johns still with you take one day at a time please and try not to think the worst i know i have been there and got the t shirt thinking of you and if possible keep us up to date hugs and cuddles ali regards to john

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Hi Ali :-D A very warm welcome to BTG....you will find lots of helpful info and lots of support here...you dont have to go through this alone. There are lots of us here that know what you and your hubby are going through, like Paul has just said. It is a very scary time, hang in there....and remember to take care of yourself too. Look forward to hearing more from you....please let us know how John is doing.

Take care

Love Tina xx

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Guest Nightingale

Thank you.

I have been by his side and not been home for three weeks, and he was making such improvements I was just stopped in my tracks by the phone call last night. I am living at a B&B as the hospital is so far away from where we live, so life is totally up in the air.

Will update as and when I have news. Now to put a smile on my face and head for the hospital.

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Hi Ali

Welcome to BTG as Tina and Paul have said this is a fabulous site and we will try to offer you the support you need at this difficult time. It must be really hard for you being so far away from your family and friends but hang in there.

As Paul has said if there are real problems the hospital would have called you back again to let you know. Hoping the news isn't too bad when you get there please let us know how John is getting on and remember to look after yourself as well.

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Hi Ali,

Life must seem so topsy turvy and unsettling for you at the minute ..... I think for a lot of us here, the neuro hospital was unfortunately some distance away from our homes. It's a shame that you can't have someone with you, for a bit of company and support...... must be hard doing this all alone.

I hope that the news from the hospital is okay and as Paul has said, I'm sure that somebody would have contacted you, if there was an emergency.

If you need a friendly ear, then we're all here for you .... we also have a chat room at the top of the forum if you're feeling a bit isolated and just want to have a natter with someone.

Wishing you and John the very best .... xx

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Hi my wife merrill also had acomm artery clipped and basiler artery coiled (i think i've got that the right way round) also in Addenbrooks and i have always said that if i had been a millionaire with all the money in the world i could not have bought her better treatment, what i found is that they are slow with the info but they prioritise things,but when iasked for the consultant to have a chat (Mr Kirkpatrick) then he was there or he would send his second in command and they would answer my questions, if you don't have any luck with them then ask to speak to mickey the nurse practitioner who also works with the surgeons I will pm you mickey's phone number later today and you go to reception and ask them to buzz her and she is brilliant,I have no doubt your husband is in excellent hands, and hopefully your outcome will be as good as ours good luck to you and your husband Rod

P.S throughout merrills time in Addenbrooks i too found everything so alarming and very frightening, i'm not a religous person but when i wanted a quiet space to think i used to go and sit in the hospital chapel it really striaghtened my head out sometimes.

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Guest Nightingale

Thank you all so much for such a supportive welcome to the forum. This site was recommended to me by a friend whose partner had an SAH 18 months ago (and she's doing just fine now :-D)

Back to Johns late night emergency: It wasn't a rebleed, which was my biggest worry, but he has an infection in the cerebrospinal fluid. He had a scan and a lumbar puncture and infection is present and they are probably fitting another EVD tonight to relieve the pressure. The consultant also mentioned that they may consider a shunt.

John looks so poorly again. He only responded to pain stimulus even though he came off sedation in the early hours off the morning. It was a bit upsetting as his response appeared convulsive, but they did an EEG and the indication was that it isn't epileptic.

It seems we are back to square one, but he's still here and has fought off infection before so I hope that we can beat it this time too.

I'm dead on my feet and John hasn't woken up so I am going to hit the hay for a few hours to catch up on the sleep I missed last night !

Ali

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hi ali

good news in one respect the infection can and will pull him down but the drugs should sort that out over a few days so fingers crossed a shunt is ok and the results are quite remarkable so please dont worry too much enjoy your sleep i think you need it take care keep us informed take care happy dreams

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Hi Ali,

It looks as though the hospital are keeping their eye on the ball and treating John accordingly ..... so, it looks as though they're doing all that they can.

I had convulsions or seizures during my stay in hospital .... but haven't gone on to develop Epilepsy, but know how distressing my family found it .....

He's still fighting Ali and there's plenty of hope ..... hope that you manage to get forty winks and restore some energy ..... sending hugs to you....xx

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Hi Ali

Welcome to this friendly site, You will find so much help love and support here. Hope John starts improving again soon now. we look forward to both of you posting on here. Get plenty of rest yourself as you will need to be strong when he gets home. My hubby did the sameas you and travelled back and fro and tried to keep a job going too then was poorly when i came out of oxford which was hard for us both, so rest for you too is very important. sending you love and prayers

god bless caz x

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Hi Ali

Welcome to BTG,

I was in a similar situation as your husband, but it looks as if your hospital is really good.

I know from my children that it was a difficult for them to watch me going through all this as I cannot remember but they now look back at that time and feel very grateful that I am here.

It's always important that you too take care of yourself and you can always come here to voice your concerns, there is always someone here to help.

Take care.

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Welcome Ali,

This site is wonderful, everyone on here helped me so much when I just felt so alone and terrified.

I know it is so frightening being the partner of the person who suffers the SAH because you just feel so helpless.

All the best and hope everything is OK.

Mel x

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Hi Ali

Hope you managed to get some rest and are feeling a little better. Thoughts are with you and your Husband x

I hope you are able to gain some comfort from the support that's available from everyone on this site, there is always someone to talk too whenever you need it.

All the best

Sam x

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Guest Nightingale

Wonderful messages to welcome me to the forum and some very kind personal offers of support too - you people are the greatest !

An update of Johns condition - he was transferred out of critical care yesterday and is back on a (albeit different) ward, with a new EVD. Awaiting the micro biology results but it seems certain that an infection caused the rapid dip on the GCS and the hydrocephalus.

I saw his consultant on Thursday who told me he is considering a shunt, yet the ward doctor today told me that they were considering taking the EVD out....are these actions contradictory ?

He is on a different ward now where the nurses and doctors dont know him. One of his previous Nurses who was on duty the night he deteriorated came up to see him today and was suprised that John wasnt sent back to them, and is kindly asking on my behalf if he can be put on the ward where the doctors and nurses looked after him for 2 weeks and know his indicators much better.

I'd be much happier with that. After the last set back I want the most competant care possible. Neurologically he doesn't seem any different to how he was last week, so that is good. If anything his memory seems improved although he does utter some absolute nonsense. Can't make out if his natural wit or the infections talking sometimes :wink:

Just desperate to get him home to a local rehab unit - I'll not be able to return to work if I stay off much longer and we can't afford for me not to be paid further than the end of this month.

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Hi again so glad to hear john is doing much better now, for us there were up and downs all the way but we're getting there as i'm sure you will, and Merrill said alsorts of strange things for weeks afterwards some which i found quite alarming, but that gets less as time goes by, just don't expect all steps forward as i did, there's good days and not so good but i'm sure you'll get there in time, Best wishes to you both, Rod

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hi ali

pleased to hear johns back on the ward im really pleased

don't worry to much about the shunt or evd i can understand some people who suffer sah don't really need a shunt or an evd sometimes the brain allows the drainage to carry on as normal but some do have a problem where the cfs dosnt drain away because of poss blocked ventricals due to swelling of ventricals and would need a shunt placed into the skull to allow the excess fluid to drain into the abdominal cavity whereas the body the reabsorbs the fluid there is no visual signs of the shunt in situ some are life long others can be removed in due course removing the evd is poss to find out if johns draining normally or if he gets a back up then they may consider a shunt to be placed so not contradictory just another stage before they get john ready for rehab just try and take some time for yourself ali were hear if you need us regards to john take care

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Hi Ali :-D

Sp pleased John is back to the ward...but really hope he can get moved back to where he was....lets hope they can sort this out for you. Please remember to rest up and eat. Thinking of you both...take care love Tina xx

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