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Identical Twin Sister Tina just had SAH


tishacf
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Hello everyone, my name is Tisha, my identical twin sister Tina had an SAH on Wednesday 22nd April 2009. We are 53.

Initially they operated and put in a coil and very slowly she seemed to be getting better. By the following Wednesday she was out of the HDU and on a normal neuro ward. She was off oxygen and all her drips and for the first time since it happened we could have a conversation and I could give her a hug. She was so up and positive and cracking jokes with the other patients on the ward.

Then on the next day she was very confused again and made no sense. They found fluid on the brain and did a lumbar puncture to relieve the pressure. Then the next day another lumbar puncture and then another operation to put in a drain. She was still non responsive and they did a scan.

On Sunday we were told that she had vascuar spasms and that the blood had not been able to reach her front lobes and that there was irreversible damage. The doctor told me to prepare for the worse and that she could die.

Since then she is in HDU on a ventilator and totally non responsive. This is so scary. I have visited her everyday but today I just feel I need a break. Is that selfish? Has anyone else had vascular spasms? Can anyone tell me if she is aware I am even there?

Thanks so much

Tisha

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Hi there

Warm welcome to the site Tisha, No its not selfish having a 'T' time out you need as much looking after as your twin, you have to be there be strong its a tireing thing doing that....

taking each day as it comes is really it I think.

I had lumbur punchtures and have a tube in my brain to drain the fluid away my brain produces too many vitimuns

take care of yourself

Louise.x

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hi tisha

im sorry to hear about your sister my lin also has had an sah and vaso spasm which is the name given to the blood vessels that go into spasm reduceing the blood flow to the brain lin had a servere bleed and vasospasm about two to three months down the lin lin did respond to me with blinking of the eyes to particular questions up untill christmas lin was improving then had fluid on the brain and had to have a shunt to drain the fluid from the brain this worked but not as good as i hoped for it seems it has set lin back 6 months sort of post surgery your sister being on a ventilator may be to allow the brain to recover as much as it wants or is able to one thing is that hearing is the last thing that goes so as long as your talkinig to her i think she will know your there i was given the same news that lin wouldnt survive here we are nearly nine months down the lin lin is still with me and has just been moved to a nursing home where im hoping lin will improve as much as he can the dr always prepare for the worst but they admit they dont know what the brain is capable of by all means take time out no one can blame you all i can offer is talk to her take one day at a time every day your sister goes is one day longer you are together please take one day at a time my thoughts are with you i know what you are going through if i can be of any help or support you can always pm me just click on the pm button take care hugs and cuddles to you and your sister and try and look after yourself btg have been fantastic nursing me through the hell you are going through take care

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Hi Tisha

Welcome to BTG so sorry to hear that your twin Tina is so poorly at the moment it must be so hard for you seeing her like this. Paul has already responded to you and is probably in a much better position to answer your questions than I am. My thoughts and prayers are with Tina, yourself and your families.

Just remember that its okay to need time out when you need to.

Janet x

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Hi Tisha, no way is there any reason to feel it is wrong to need a break, the other half of you is very unwell what a terrible strain that must be, if my own experience is anything to go by ( very similar to Tina's) I had no idea what day it was, how much time had passed or when and if there was anyone there so Tina won't be aware that you needed a break, and think about it, if she was, I bet she would understand! You need time for you otherwise you will not be able to give Tina the support she needs, so please don't feel guilty, just take that breather and keep talking to us, to help to relieve the pressure.We will all be thinking of you and about Tina. When you go in again, give her a big hug from all of us :)

Trisha, I have just reread your post and seen that the doc had said that there has been irreversible damage, please don't get too down about that statement, all brain damage is irreversible, but it does not need to mean she will die or that her brain damage will be necessarily severe, her body now needs that compulsory rest to try to recover, you just hang on to that. All of us on this site have irreversible brain damage, but we are very much alive, as guess you will find out :wink: I was not really expected to live, but I'm still here, still functioning and a pain in everyone's butt, just ask all the others :wink:

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Tisha, welcome to behindthegray.

You are not selfish to feel you need a break. Families and carers suffer too. These things can take a great deal of time, so keep your spirits up and remember you need to look after youself as well as your sister.

Regards

Keith

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A very warm welcome to BTG...so sorry to hear about your sister Tina....must be so hard for you Tisha, please dont feel bad...you must look after you as well xx.......glad that you have found us, and look forward to hearing more from you...my thoughts are with you....take care Love Tina xx (yes i am a Tina too)

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Hello Tisha

You are not being selfish your sister will need you to look after yourself and take care of yourself x x

I am sending you both a big hug x x stay positive and take it one day at a time x x

love

donna

xxxxxx

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Thank you all so much for your replies. You have no idea how much they have helped me today.

Tonight I went and saw Tina and for the first time in a week she opened her eyes and appeared to be focusing. She also squeezed my hand really tightly, was moving her arms and making different facial expressions. I am though trying not to be too excited about it.

Her consultant said that her latest scan showed that the spasm appears to be slightly less - and he emphasised the world slightly - but said that was a good thing.

Tomorrow she is having a trachyotomy which should help because she keeps biting the ventilator pipe and trying to force it out of her mouth. They will also be stopping the sedatives she is on and have said that they will then be able to assess her.

I am praying that when they reduce the sedative tomorrow we will be able to see an improvement in Tina's condition even if its only a very tiny step.

I told the staff in ICU that I had joined this forum and that several people on here had mentioned the wessex neurological centre! They said that they thought the forum was a good idea. What was good was being able to understand a little more of what they were saying simply because of what I had read on this site.

My new mantra - One Day At A Time

Tisha

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hi tisha

very good news sweetheart things do look a bit better for tina you should see a bit of a change in tina when the endotracial tube comes out the traci is not a lot to worry about they will take it out fairly quickly once tina has improved enough im pleased she has reognised you and squeezed your hand i know it would have meant a lot to you as it would anyone else and you should see a marked improvement in tina once the sedation wears off as well my thoughts and best wish's to both you and tina hugs and cuddles

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Bless you Tina, what a lovely lady you are.

I've read every reply to your initial post, so I can't add much more, but I would like to say....as others already have....we've all experienced this, and because we found this wonderful site, we're a great support to each other.

So, Tina, welcome aboard hunny. Love to you and your twin sister.

p.s. I'm also a twin, but non-identical...she's the bossy one!! :lol:

Lots of love,

B x x x

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Tisha, I'm so pleased to hear that you have seen a little improvement in Tina, it may be small but it is in the right direction, so pleased for you both and I'm sure that as the sedative effects clear things may start to look even brighter, you will be able to communicate so much more too I expect when the tubes etc are removed, the tracheotomy should help a lot, we will all be thinking of you both :)

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