Skippy Posted May 16, 2009 Share Posted May 16, 2009 Hi Tisha Great news that Tina was more responsive - so pleased for you. But don't get disheartened if its not the same next time you see you her. My daughter wouldn't come to see me in hospital when I was in ICU cos the bleeping of the machines scared her too much - every time my blood pressure went up and the machine beeped I vomited, it scared her too much so she waited until I was off ICU to come and see me. Take care of you hun and we're always here to talk to. Love Sami xxx Quote Link to comment Share on other sites More sharing options...
tishacf Posted May 16, 2009 Author Share Posted May 16, 2009 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 Quote Link to comment Share on other sites More sharing options...
Janet Posted May 16, 2009 Share Posted May 16, 2009 Hi Tisha Sorry today didn't go as well with Tina but maybe she was just tired after yesterday. I think all the Neuro's have their own opinions about recovery which is why you get told something different by each one. The brain is a remarkable machine and Tina's is working hard to mend itself right now. Enjoy your day out tomorrow hope the weather is good for you. Thinking of you all. Janet x Quote Link to comment Share on other sites More sharing options...
Vivien Posted May 17, 2009 Share Posted May 17, 2009 I spoke to a doctor quite a while after my SAH and asked him how much I would recover and he said 'How long is a piece of string', in other words, they really don't know! Vivien Quote Link to comment Share on other sites More sharing options...
phil13 Posted May 17, 2009 Share Posted May 17, 2009 Hi Tisha, If it is any consolation to you, my Sharon was written off about eight times as 'zero recovery' as she suffered severe brain damage to both sides of the brain. These days, even though she is under 24 hour care, she is talking to me every day; words, phrases, and sometimes whole sentences and she's getting better at it each day. She is very much there, even though she has a very long way to go. The doctors really don't know what will happen but they tend to prepare you for the worst. In your case, the fact that Tina is responding is really amazing. However, she will have long sleep periods as her brain will be recovering from a major trauma so don't be too worried if she sleeps a lot. Take care, Phil x Quote Link to comment Share on other sites More sharing options...
Guest ElaineW Posted May 18, 2009 Share Posted May 18, 2009 I know how you are feeling after a down day but she sounds to me like she is doing tremendously well. Some days my mum didn't open her eyes for the whole of my visit and it does destroy you but I think this is part and parcel of the trauma sustained but it tears you apart when you have to leave after a day of no response. I can only truly stress that this happened loads of times with my mum and although it is hard, just try to have some comfort in that for others it has been exactly ehe same and hopefully that will keep your chin up a bit. I used to feel so down trodden and beside myself on bad days but this is not unusual. Elaine Quote Link to comment Share on other sites More sharing options...
tishacf Posted May 22, 2009 Author Share Posted May 22, 2009 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 Quote Link to comment Share on other sites More sharing options...
Karen Posted May 22, 2009 Share Posted May 22, 2009 Hi Tisha, That's really good news about Tina ..... I didn't go to a re-hab centre, but there are a few people on here that did ..... some, won't probably be able to recall the experience, but hopefully there will be some carer's that will answer your post.... Hope that Tina continues to go from strength to strength ...... xx Quote Link to comment Share on other sites More sharing options...
Janet Posted May 23, 2009 Share Posted May 23, 2009 Hi Tisha Good to hear that Tina has been so responsive. I can't help with rehab either as I didn't need it but as Karen has already said there are some members who have been into rehab. Hope you have a good weekend with Tina. Janet x Quote Link to comment Share on other sites More sharing options...
donna79 Posted May 23, 2009 Share Posted May 23, 2009 Tisha I keep myself updated with your posts x x x What a fantastic sister you are x x I have not been in re-hibilitation myself but like Karen has said there is others on here that have x x Keep smiling hun and remember to rest yourself lots love donna xxxxx Quote Link to comment Share on other sites More sharing options...
Tina Posted May 23, 2009 Share Posted May 23, 2009 Hi Tisha Good to read your update........its lovely to read that Tina is smiling and saying hello......must have made you feel so good I did not need rehab, so cannot comment.....but i wish you and your family all the very best...keep positve. Take care, Love Tina xx Quote Link to comment Share on other sites More sharing options...
tishacf Posted May 24, 2009 Author Share Posted May 24, 2009 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 Quote Link to comment Share on other sites More sharing options...
karen lloyd Posted May 25, 2009 Share Posted May 25, 2009 Hi Tisha, I have been following your story and my heart goes out to you. My mother had a grade 5 SAH in August of last year. We were given the worst possible outcome for her. She also had vasopasm whilst in intensive care. Mum spent 17 weeks in hospital and we were basically told that she would never come home and never function again as a person. We went thru exactly what you are going thru, the conflicting information from doctors etc. At the end of the day I really think that most of the time they are guessing and I would take everything they say with a grain of salt. My mother is now home and is a fully functioning wonderful person again and she was 72 when this all happened. It has taken a long time but the brain is an amazing thing and works in very mysterious ways. My best advice is to take everything that the doctors say on board but don't take it as gospel. I think that they always seem to give you the worst possible senerio even when things are looking positive. And trust me it really is one step forward and two steps back but with love and time miracles can and do happen. My love and prayers are with you Karen Quote Link to comment Share on other sites More sharing options...
jess Posted May 25, 2009 Share Posted May 25, 2009 Hi Tisha I am not a dr however it looks promising to me she is talking, and breathing so there is hope try to hold on to that. Sending you all big hugs. Jess.xxx Quote Link to comment Share on other sites More sharing options...
paul99 Posted May 25, 2009 Share Posted May 25, 2009 tisha im pleased about tinas recovery so far please don't go down to far i think Tina will surprise you i have been given the same information lins was grade5+ bleed and a massive vasospasm i know lin is there and im not going to give up im hoping lin will pull through the drs always prepare us for the worst because they dont know how the brain will recovery so stick with it girl keep talking to tina that is your best guide and the drs if you see an improvement in tina then hope for more one day at a time there will be ups and downs but thats what life has dealt us so we get on with it i have seen many rehab units and what they achieve is always remarkable they work with what they have and work on what they have and i have seen many remarkable improvements in most of the patients if you contact mojo her mum has been transferred to a brain injury rehab unit i think sharon would be able to help you i think you are also in the same area as well so all is not lost take your lead from tina and when she becomes a little more with it then work and work again on her everyday tina is with you is a happy day so go for it and dont give up hugs and cuddles to you Quote Link to comment Share on other sites More sharing options...
Guest ElaineW Posted May 25, 2009 Share Posted May 25, 2009 Tina sounds like she is still doing incredibly well to me and your story is very much deja vu. Gosh it all seems like yesterday when I read your postings. I can rememberr feeling exactly the same as you. Mum too had several lumbar punctures but it does give you peace of mind to know that the pressure is not building up again. I clearly remember when mum was moved from HDU she was "not with it at all" - the move seemed to totally unsettle her. Having physio to me seems a really good sign. I think you should be very proud of your sister and yourself. My very best wishes to you both and I look forward to reading more steps forward. Elaine Quote Link to comment Share on other sites More sharing options...
perrycornish Posted May 25, 2009 Share Posted May 25, 2009 Tisha, this is a horrid experience for you, but I reckon the best thing for you is your one day at a time and that wonderful,true, message of support from Karen Lloyd, Hang in there and keep loving, we are all rooting for you both Quote Link to comment Share on other sites More sharing options...
Karen Posted May 25, 2009 Share Posted May 25, 2009 Don't give up Tisha ..... Karen Lloyd is right and we've often seen on here, that people are given the worse case scenario and they've gone on to make a much better recovery than predicted by the medics.... Tina is still fighting her corner, but if you're getting conflicting information then pin them down and insist on talking to the Consultant. xx Quote Link to comment Share on other sites More sharing options...
Louise Posted May 26, 2009 Share Posted May 26, 2009 Hi there Yes I think they do give the worst case sanerio, and go on the caution side, I know I've said this before but Ronnie was told that I'd be 80% disabled 20% able and I'm not at all really or if anything I've turned it around and improved on it lots.... but it makes my blood boill when I hear of families that the doc say after 3moths hey thats the best its gonna be, how would I be now if that was the case.....And yes like Karen says pin them down to get an answer, ask questions..... take care Louise.xx Quote Link to comment Share on other sites More sharing options...
Tina Posted May 26, 2009 Share Posted May 26, 2009 Hi Tisha hang in there.....my thoughts and prayers are with you...take care ...love Tina xx Quote Link to comment Share on other sites More sharing options...
Cal Posted May 26, 2009 Share Posted May 26, 2009 Hi Tisha, My thoughts and prayers are with you and Tina. Like everyone else has said, take it a day at a time. Cal XXXX Quote Link to comment Share on other sites More sharing options...
phil13 Posted May 27, 2009 Share Posted May 27, 2009 Hi Tisha, I was given dreadful prognosis after dreadful prognosis to the tune of about eight regarding Sharon and it got to the point where I just expected to hear the dreaded news from doctors but deep down I knew my instincts. Trust yours. We were told that performing a shunt on Sharon wouldn't make any difference and she wouldn't make any improvement, ever! Now she's trying to talk to me every night after just over two years!! They don't know but they prepare you for the worst. Keep talking to Tina and give her all the support you can and she'll know you are there. It's a bit like waiting for the mist to clear. Take care, Phil Quote Link to comment Share on other sites More sharing options...
tishacf Posted May 29, 2009 Author Share Posted May 29, 2009 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 Quote Link to comment Share on other sites More sharing options...
Karen Posted May 29, 2009 Share Posted May 29, 2009 Hi Tisha, That's really good news and just what you needed to hear! Hope that the good days soon start to outweigh the grotty ones. Love K x Quote Link to comment Share on other sites More sharing options...
jess Posted May 29, 2009 Share Posted May 29, 2009 That is great news I am so pleased for you. Jess.xxx Quote Link to comment Share on other sites More sharing options...
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