tishacf

Hi everyone, Thanks so much for you replies, and yes I will give Tina a big hug! Hi Zoe Thanks so much for your post. I think you have put it in a nutshell - yes, it is such a scarey time. I gather from your post that Richard had his SAH in March 2010, and came home in January this year, so he is almost a year behind my twin Tina. Tina has her SAH in April 2009 and was in hospital/rehab etc for two years. Thinking back a year ago Tina was far more stilted in her conversations and her lack of social interaction at that time was quite marked. In the last year she has moved forward quite considerably. Everyone told us, from quite an early stage, that Tina had reached her limit on recovery. Well, thankfully, they were so wrong. Even now, 26 months after her SAH/stroke, she is still making progress, little by little she is gaining her independence and I am gaining my sister back. Her personality has very slowly come through and her wonderful dry sense of humour has also returned. I wish you and your family all the very best and hope that Richard continues to improve day by day. Tisha xx

Hello everyone, I know it has ben a massive amount of time since I wrote on here, but I do occasionally just pop in to have a look and see how people are. Well I thought I'd quickly bring you up to speed with Tina's amazing progress. She is now home!!!! I still can't belive it - after two years! The other wonderful thing is that she has progressed to walking with a frame, chatting quite normally and her memory is amazing - but thankfully she can hardly remember the SAH/Stroke at all. I have given her husband Woody the link for this site as Tina is now well enough to use the computer now and again. She may well be posting on here and be able to offer support for other SAH sufferers and their families. Seriously everyone, I feel we have witnessed the most incredible miracle looking back at where Tina was, and what her prognosis was, which at worst was that she would die and at best that she would be a virtual cabbage - how wrong they were! My love to everyone, and for the support you all gave me through the most difficult and harrowing of times. I couldn't imagine getting through it without you. You have no idea how many times your posts helped me to gain some strength from somewhere to deal with it all. Tisha xxx One day at a time!

Hi everyone I can't believe how long its been since I posted on here - how time flies! Well thankfully Tina has come on leaps and bounds. She has now been in the rehab unit for 3 months and has amazed all the professionals with the progress she has made. She can now eat anything at all and feeds herself with her left hand. Her right side is still pretty much paralysed but through the marvellous work of the physios she is not in pain with that anymore. She has also just started standing with support. I have asked the physios if I can be there when she stands next week as I would love to be able to give Tina a hug - which I haven't been able to do since April! I was delighted last week to find that Tina has been upgraded to an electric wheelchair! We went for a 'walk' around the hospital car park and had a few scarey moments because Tina won't always do what she's told - I'd tell her to turn left and she'd turn right, or even more terrifying tell her to stop and she'd go full steam ahead - all the time laughing because I was so panicky!! Her speech and memory have improved too. It is almost possible to have a normal conversation with her and she is much better on the phone now as well. I was so chuffed last week because ever since we spoke on the phone from when we were about 16 years old we'd always end our conversations with 'tara Sis'. Well since her SAH/Stroke she's always said a very shakey goodbye when our calls ended - well on Wednesday for the first time she ended with 'tara Sis' - I was over the moon! Whats also great is that she is at last beginning to initiate - she phoned me on Thursday morning and asked me to take in a particular brand of coffee!!! The problem now is that as she is becoming more like her old self she is becoming bored! She is also extremely aware of her disabilities and is very emotional. I think that she needs to be somewhere now where more is happening and maybe some outings too. At the goal setting meetings it seems improbable that Tina will be able to go home from rehab and will have to go to a residential unit for a little longer. I have found an amazing place only 5 mins from where Tina lives and would love her to be able to go there. It is a purpose built residential unit for adults with disabilities including aquired brain injuries. Each patient has their own room with an ensuite wet room with immediate access to wonderful gardens. They offer both maintenance and rehab physio and their philosophy is to include their patients in the community with lots of outings. The problem is that the consultant at the rehab unit thinks that Tina would still benefit from staying where she is for the time being. I am increasingly concerned at Tina's emotional state - I've had some very distressing phone calls from her and she hates where she is. Whilst the physios are fantastic there is nothing else going on and I can't imagine how long the days must feel. The residential unit I've found has two rooms available at the moment so I'm really keeping my fingers crossed that somehow we can manage to move her there. Please everyone keep your fingers crossed! Love to everyone Tisha

Hi everyone and thank you so much again for your responses to my last post. It was great news when I saw the neurologist last week. My MRI scan looked fine - the only slight problem was that they hadn't carried out an MRA at the same time, which I gather measures blood flow within the brain. So, I now have to wait for that, which should be about four weeks and then a further four weeks for the results. I'm nowhere near as worried now knowing that my MRI didn't show anything bad. Tina has been making massive improvement!! Her speech has improved considerably and she is far more confident when she talks now. I had told her last week that I was going on holiday and that she would HAVE to learn to use the phone before I went. Well I have managed to teach her how to answer the phone but seem to have a real problem getting her to put the phone down when the call is over. Yesterday I phoned her in the morning and it was so wonderful being able to have a chat, but she just wouldn't put the receiver down!! Eventually I had to phone the nurses station and ask if one of them could pop into Tina's room and put it down for her. Her sitting is getting much better too and the physio has said that she will be able to use a normal wheelchair from now on. That will be great because the chair she has been using is so cumbersome to move around. The best news though is that Tina has been given a buzzer so that she can call a nurse for assistance. Well yesterday she buzzed and asked for a bedpan - that is just so fantastic. If she can become continent her chances of independence become that much greater. I'll be seeing Tina this afternoon but then I am off on holiday for a week. I know I will miss her so much, but at least I will be able to phone her!!! Love to you all and keep well Tisha x

Its been a long time since my last post as I have not been very well - I have lupus and chronic fatigue and I think that all the stress of Tina's illness finally caught up with me. I have though managed to visit Tina every other day and then been able to rest. Tina was moved to the rehabilitation unit within the hospital grounds almost two weeks ago! She has her own room with its own tv/dvd and radio/cd player. She is making good progress. They dress her everyday and, with assistance, she is able to sit in an ultra padded wheelchair for a couple of hours . Her right side is paralysed but with help from the physio she is able now to move her fingers a little. She is looking brighter every day and now its quite normal for her to say hello when I arrive!! She has the attention span of a gnat so talking to her is quite difficult and she can take a long time to answer, so I have had to learn to slow down and give her time to think. She is now able to recognise most of the family and seems to be able to remember quite a lot from when we were younger, but not so good about the last few years. For the last week I have been teaching her to pick up and use the tv remote and last night she managed it twice, which is quite something. I have told her that if she can master that then she will be able to have a phone in her room so that friends and relatives could call her - she seemed pretty keen on that idea. Even if I just rang to say good morning and she could hear me and just say hello that would be great. So my goal next week is to get that working. She is beginning to have an understanding of what has happened to her and this makes me so sad. Last night she was looking at her paralysed hand and then just looked at me and said 'oh sis' and started crying. My heart was breaking and I just hugged her and told her that together we'll do whatever it takes to get her as well as possible. Its such an emotional time and I just can't imagine how Tina must be feeling. She has no memory of being in the main hospital at all and last night I was telling her a little of how she had arrived at the situation she is in. She seemed very interested and quite keen to know as much as possible. I'm sure it must be so odd to try and work out why you are so limited in your movements and speech. Later we were listening to a cd with music on it that we used to listen to when we were at college together. Again she became quite upset, but I managed to get her laughing when I was talking about lots of the funny things that happened to us. She said ' I mean what' and I waited and then asked her what she meant and she said 'I mean what I'm saying'. A few minutes passed and she said 'I mean what I'm saying when' and then she looked at me and said 'I mean what I'm saying when I say I love you so much'. It was the very best moment. It had taken her such a lot of effort to string that sentence together and I was trying so hard not to cry. I feel so lucky that Tina has done so well and keep praying that she will continue to progress. Last week I had the MRI on my brain and this afternoon I see Tina's consultant to see what he has to say about my risk of having an SAH. I must admit I am quite scared, but then think that I am so lucky to have this opportunity which most people don't have. Fingers crossed everyone please! Tisha

Hi everyone! I haven't posted for a while because for the first time since Tina's SAH I have been able to catch up on the housework and been out and about a bit too. There was very little change with Tina for most of the week, she was sleeping a lot and not very responsive. On Thursday Tina had the operation to put a shunt in her brain. She has been having a lumbar puncture every couple of days to relieve the build up of fluids in her brain. The idea of the shunt is that it will be there permanently and will drain directly into her stomach where the body just naturally disposes of it. She had not been aware of very much in the preceding days before the op and had only said the very occasional word. Mr Duffil, her consultant said that it was possible that having the shunt could help with her recovery, but he could make no guarantees. I spent most of Thursday in tears. I was so worried about the operation and was literally praying that she would be ok. I felt like this was her last chance for any real improvement and I just couldn't bear the idea of anything going wrong again. I was actually so distraught that I phoned the samaritans. I felt like my friends and family had been through enough recently but I desperately needed to talk to someone without having to watch what I said. I often feel that friends/family feel like they somehow have to put things right, which of course they can't in this instance. The chap I spoke to was great, he listened and comforted me whilst I bawled my eyes out. I was the most fearful I have ever been. I think it was an outpouring of the culmination of almost two months of unbelievable stress and worry. It was so wonderful to be able to express myself to someone who didn't once tell me to be strong or that it would be alright. I really did feel so much better when I came off the phone and felt I could deal with things again. I would highly recommend a phone call to them!! Well on Friday I went to visit Tina and was amazed at the change in her. Firstly I was welcomed with a wonderful smile and then couldn't believe it when without any prompting she said 'hi sis'. We were able to communicate!!!! I was with her a couple of hours and although she did 'come and go' a bit, she spoke more than she has since the vasospasm, and at times was quite muddled as well. I asked her to hold my hand, which she did, and then I kissed her hand. I was so amazed and overjoyed when she moved my hand to her lips and kissed it too and then gave me a massive smile! That was just so fantastic. I saw her again on Saturday and she was not quite as alert as on Friday, but she was still very interested in what I was saying and did make comments and answered questions. She seems to have regained her sense of humour and was really laughing as we talked about funny experiences from our childhood. She had a splint on her right hand as it was beginning to curl inwards and there still appears to be no movement at all in her right arm. When I saw it I asked her what it was and she very matter of factly told me 'It's my splint sis'. Its funny because she has no idea how impressive it is that she can manage to answer me without any prompting. For the first time since going into hospital she had absolutely no pipes or drains or needles. Not even her feeding tube. She is able to be fed pureed food and has at last been able to have a cup of coffee in a drinking beaker!! I honestly feel like a miracle has happened and when I went in the lift back down to the car I was just saying out loud thank you thank you thank you - if anyone would have heard me they'd have thought I was some kind of nutter. I gather that the plan is that she will be transferred to the rehabilitation unit within the next week or so. Fingers crossed! Hope everyone is doing ok. Tisha

Its now six weeks today that Tina had her operation after her SAH the night before and five weeks since her vasospasm. This week it's been the usual ups and downs again. On Monday Tina didn't look at all well and there was virtually no response from her either. Kristie and I arrived at the hospital and every time we went into see Tina a physio or a nurse or a doctor would arrive within a couple of minutes and ask us to come back in 20 mins or so. By the time we left, after about 2 hours we had only seen her for about 10 minutes in all. The only plus was that it was so hot in there and I managed to get a nurse to put a fan next to Tina. She looked exhausted and we both left feeling so deflated. We decided we wouldn't go to visit in the afternoon again as this has now happened so many times. Tuesday night though Simon and I went and we were able to spend some nice time with Tina. She didn't say anything but was wide awake and very interested in everything. She copied my facial expressions and even managed to lift her arm when I asked her to. I waved at her and she attempted a wave back! I was chatting about some funny times we had with our brother Ray when we were little and she was listening intently and smiling. She almost managed a chuckle too!!! Yesterday I spoke to the physio. They have been sitting Tina up in a wheely chair thing by the bed for about half an hour every morning. She said that when she is a little more used to that I might be able to wheel her outside into the sunshine! She also said that they are referring her to SALT today (speech and language therapy) which should help too. The only possible downside is that they might still put in a permanent shunt which would take any extra fluid away from the brain. Every day they say they might and then still carry on with the lumbar punctures, so we are just taking it one day at a time. I gather that in the long term it might still be better for her, but in the shorter term if they did go ahead with it I worry that she could be back at square one for a while. Fingers crossed that progress continues - even if it is such small steps. Tisha

Thank you again for your encouraging remarks, and Phil, I can't begin to imagine what you have been through. We are only five weeks in and it fels like the longest five weeks ever. I have some amzing news today! Tina was taken for a routine CT scan yesterday and was accompanied by a nurse from her ward. The radiologist, not realising what Tina had been through, asked her date of birth and the nurse was about to say Tina wouldn't be able to give that information when Tina told her - the nurse couldn't believe it. Then the radiologist asked her address and she gave an address, the wrong one, but where we had lived when we were ten years old. When the nurse was telling me Tina was obviously listening because she said her date of birth again!!!! Also she was assessed for rehabilitation and they have said as soon as she is off antibiotics she will be moved to the rehab unit which is just across the car park from the neuro unit, and could be as early as next Thursday. Tina was really alert and looking at everything yesterday. I took in a mirror and she was so interested in looking in it and was smiling so much. She looked so much better than a couple of days ago. They said that they have run ultrasounds and that the vasospasm has almost stopped now. The physio had also helped her to sit on the edge of the bed earlier and the nurse said Tina was obviously pleased because she was smiling all the time. I really feel that she is heading in the right direction. I came back from the hospital with the biggest smile. Tisha

I went to see Tina today and she was laying flat as they had carried out another lumbar puncture. She was asleep when we arrived but when she woke up I said Hi Sis and she looked straight at me and said hi!! I was so pleased but then had a chat with a doctor who bought me back down to earth with the biggest bang. He said that Tina was progressing so slowly that they thought performing lumbar punctures might relieve pressure on Tina's brain and assist in her recovery. He said that when they did it they found there was no pressure to be released. He then said that putting in a shunt would not increase her chances of recovering further either. I was so confused because I was sure they had done the lumbar punctures the other day because there was fluid on the brain. This keeps happening where I've been told totally different things by different people. I asked him about rehabilitation and he said that there are special rehab units for people who have had brain damage but said that we would need to discuss that with her consultant or his registrar. I also asked about the prognosis for Tina's recovery. He was quite candid and said that as Tina had such a severe vasospasm and so much time has now passed since then, that it is more than likely that she may not progress any further. Tonight I feel the deepest sadness. One day at a time Tisha

Thank you once again everyone for your kind replies. Phil, it was very interesting to hear about Sharon as your story gives me so much hope. Also Elaine, explaining about your Mum sleeping so much helps me to understand how Tina is. This week has been a typical roller coaster ride. Firstly Tina had her brain drain removed which was really good news. Then they moved her out of High Dependency to a normal neuro ward. My first visit to the normal neuro ward was dreadful. Tina was in a bed in the corner, next to another patient who was continually moaning. Tina looked so uncomfortable and her arms looked twisted. She had what looked like boxing gloves made of bandages on which the nurse explained was because she kept trying to pull her lines out. She opened her eyes but again she looked vacant. I am sure she didn't know we were there at all. She mumbled a few random words now and again, but they made no sense whatsoever. Even though I am getting used to the ups and downs of this dreadful experience I still can't help but feel so down at times. My daughter Kristie and I left the hospital both feeling so heartbroken seeing Tina like that. Yesterday her husband was told that fluid was building up on her brain again and that she was not as responsive as before. I was so worried because thats exactly what had happened before her vasospasm. He was told they would do another lumbar puncture and if that didn't work they would consider putting in a shunt to permanently drain the fluid away. Well today Kristie and I went to visit and as we walked in the ward there were several doctors and nurses around Tina and she had a big sign over her saying Nil By Mouth. My heart jumped as I feared the worse and assumed she was going to have another operation. Imagine my relief when I was told that she was having physiotherapy and the nil by mouth sign was just to remind the nurses she is being fed through a tube in her nose. Phew ... I felt I could breathe again. They asked us if we could go away for about half an hour whilst she had her physio. We went back to the ward after a coffee and I couldn't believe it when I walked up to the bed and Tina opened her eyes and looked at me and said hello!!!!! Totally unprompted!!! Then she looked at Kristie and did the best smile ever - Kristie and I just couldn't believe it! I started singing Tina's favourite song from when we were children and her eyes opened as wide as possible and she smiled again. I wanted to capture that moment for ever. It was not my imagination - it was a real recognition of some memory buried somewhere that was stirring in Tina. Then a doctor arrived and said he had to carry out a lumbar puncture and could Kristie and I go away for half an hour again! We went for a walk and arrived back on the ward so desperate to see Tina again. The physio and the lumbar puncture must have worn her out. She did though smile when she saw us, yawned, then promptly fell fast asleep. We hadn't really had a lot of time with Tina but the time we had was the best. Her face looks less puffy - she is beginning to look like my sis again. Funnily enough a nurse did a double take when I walked in - after all we are identical twins - she must have thought Tina had made a miraculous recovery - One thing I did want to ask was about Tina going to a rehabilitation centre - does anyone have any experience of this? The nurse was telling us that when they have medically stabilised her she will be going to one. I have no idea what that will entail or how long she'd be there etc etc. Any advise/info would be great. One day at a time Tisha

I had a bit of a down visit with Tina today. Tina had her eyes open but hardly focused and was very much in her own world. I had not tried to get my hopes up too high after having such a wonderful visit yesterday. The really down bit though was a doctor who came and had a chat with us. He explained that her latest scan showed that the part of the brain that hadn't got much blood since her vasospam hadn't totally died yet, but also wasn't still working properly. He said that not much research had been carried out into vasospasms so they couldn't always understand what was happening in the brain. He didn't appear at all impressed that Tina had been speaking and said that she was still in the acute phase and it could still go either way. I felt like all the small steps towards recovery had been wiped out with his comments. Then the nurse who had been looking after Tina today was chatting to me and saying how well Tina had been doing with facial expressions and had even spoken to her this morning, which was so positive after what the doctor had said. Something we have found is that we seem to see different doctors all the time, and they all seem to say different things and have their own viewpoints. I remember when Tina first had her SAH she had a nurse who kept telling us to keep Tina awake. Then on the next visit another nurse told us that she should be left to sleep as much as possible. I know the staff are amazing, but some continuity would really help. Sorry that sounds so moany, but when you love someone so much and are worried you rely so much on the medical staff to tell you what's happening. I won't be going to see Tina tomorrow because one of her oldest friends is seeing her in the morning and her husband in the afternoon, so I think that will be enough for her. We're hoping for some sunshine so we can go for a lovely walk by the sea and blow the cobwebs away. Hopefully the break will restore my batteries ready for next week. One day at a time. Tisha

Yesterday my brother-in-law Woody went to see Tina and she was non-responsive again and very tired so I decided not to go last night, which I actually found really tough. As much as I dread the hospital I'm always so pleased to be able to see Tina and missed her so much. Today it was Woody who couldn't visit because one of their children has a highly infectious virus, and it looks like he'll be unable to go to the hospital for at least a few days. Better that though than give Tina any more problems. This evening Tina looked so much better than on Wednesday. Her colour was good and her eyes were wide open and very clear. Although she slowly moved her eyes I did feel she was actually looking at me on several occasions. The nurse explained that she still hadn't spoken to anyone, apart from saying hello when I was there on Monday. Well that was all about to change!! She started by repeating some of the words I was saying and then I was talking about people we knew when we were little, and in particular an Uncles rather odd son, Rupert. Not only did she repeat his name several times, she then said as clear as a bell 'I remember Rupert' I was just grinning from ear to ear. Then the nurse came over and asked Tina how she was and Tina asked the nurse how she was too!!! She made a few more comments about various things I was talking about and her face was also making different expressions. It was obvious she definitely had some understanding of what I was saying. After about half an hour she was beginning to look very tired again so I told her we would be going and said bye and couodn't believe it when she said bye too!!! This is all well above my expectations today. I know she was still coming and going a bit, and at times seemed completely in her own world but I do feel there was such a massive improvement tonight. The nurses were delighted too. She also had a scan and they said that there is no further deterioration in the brain, which again is such good news. Such highs and lows all of this, and who knows what tomorrow will bring, but for now I am so thankful. One day at a time. Tisha

Thank you Tina for your support xx so much xxx

Thanks again everyone for your replies - the comfort your words offer is immeasureable to me. I find it so tough to even imagine that Tina might one day be well enough to sit up and talk, never mind being able to leave messages on a forum like this! And yet so many of you have battled through this, either for yourself or a relative and come through which such positive and caring attitudes. You really do keep my hope alive. Thanks so much Karen for talking about your seizures - just the word is worrying - and its so nice to know that you have recovered and sound 'normal' after all you went through! I think I'm so afraid of ICU because our Dad was in an ICU unit when he died, 6 years ago, so every day it brings back some very frightening and sad memories. I can feel myself tensing up as we drive closer to the hospital and everyday, by the time we are walking towards the neuro dept my tummy is in knots and my legs feel like they are going to give way. Every time one of the machines attached to Tina bleeps I worry. Last night Tina yawned and both my daughter and I jumped! What a couple of wooses (spelling?) we are. Its three weeks today since Tina had her coiling op. I still can't quite believe what she has been through. One day at a time. Tisha

Thanks for all your replies. It is so nice to know that Tina will not, hopefully, be frightened - because of course to me ICU looks so terrifying with all the machines and all the drips and drains etc etc Tonight I saw Tina and she had just been moved to HDU which I suppose is yet another step in the right direction. She didn't look at all well, and every so often she started shaking. The nurse explained that she had had a seizure this morning and that they increased the medication to control them. I would have asked some more but the nurse seemed very busy. She also said that Tina has a temperature and she is on two types of antibiotics until they get the results of blood tests she had today to see what type of infection she has. Tina looked so tired tonight and although her eyes were open sometimes she didn't appear to be focusing on anything. I really don't think that she was aware that we were there at all. Thank goodness for all your comments because I understand that there will be good days and bad days so I tried not to get too down tonight. One day at a time. Tisha