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Everything posted by tricia0304

  1. Hi My husband suffered a SAH 7 years ago and ended up in hospital and rehab for a year. He had a vp shunt fitted and was on epilepsy meds for a coupe of years. He made a very good recovery and was independent etc although his short term memory was terrible. Anyway last July he suffered a bad seizure and was hospitalised and put back on meds. He then had further episodes of seizures and/or tia in November, February and April when he was hospitalised for 2 months. They cant confirm if its a tia or seizure as he cant have an MRI scan due to his clipping. He came home and was doing great, up walking albeit not much, with a walker, and a physio was coming in 3 times a week. A couple of weeks ago he had a urine infection and since then we haven't been able to get him out of bed and he knows he's doing it but he's being incontinent. He seems not to be able to process how to get up and I've tried the softly softly approach and then got exasperated with him but nothing works I cant get him to get up out of bed. He wriggles about but is unable to process how to get up. I had cancelled the carers but I think I'll have to get them back. My only worry is that will make him worse in that he wont bother even trying. This forum was invaluable to us as a family 7 years ago and I'm just wondering if anyone has any advice.
  2. Hi I've not posted for a long time as my husband was doing really well and improving day by day and I really thought we were over the worse. My husband had a SAH in 2013 and spent a year in hospitals/rehab. He is currently coming off keppra medication and will hopefully be meds free in a few weeks. The problem is his drinking. He has always been a heavy drinker as that was his business however he is now in the pub every day and the life and soul of the party then he comes home and its hell. He suddenly becomes very nasty and says terrible things to myself and the kids but cant remember anything the next day. Its particularly bad if he drinks whisky. When he's not drinking he's very loving and sweet. We've tried recording him but he won't listen to it and denies any wrongdoing. The situation has been getting worse as he has been coming off the meds and I dont know if there is a link. I dont know if the meds were keeping him under and now he's coming off them this is the real person we are left with. I've tried the doctor, who has been a great help to us, but he says its something my husband has to do himself and cannot prescribe anti depressants if he's drinking. I did think he might be depressed and could do with talking to someone and I tried a mindfulness therapist but that was a waste of time. I really dont know where to turn for help.
  3. Hi All I have not posted in a long time so probably best to update you all. My husband finally got home at Xmas after having his SAH clipped and coiled in April last year and suffering numerous complications. Had follow up angiogram in December - they thought they may have to do some more coiling but it was ok - and his neurosurgeon signed him off in May for good as he only had the one aneurysm. Things settling down and he is making very good progress. Physically no problems but still can seem confused and disorientated at times and obviously short term memory issues but overall I cant believe how well he has come on and if this is as good as it gets i'm happy considering the bleak outlook this time last year. Anyway the reason for posting...... (ps I am not asking for medical advice just wanted to hear other people's stories) we met a neurologist in December last year re his meds (he is on keppra 3000mg and lacosamide 400mg) who said he would not reduce his meds as it was too early as he had his last seizure in June and they like to wait a year. He has not had any seizures since June last year. We have an appointment next week with an epilepsy nurse with a view to stopping the lacosamide. I know the docs are quite happy to have him continue on his meds forever more but he hates taking them as he had never taken a pill in his life before this and I do worry about the side effects. I'm concerned as I dont want him to start having seizures when we are doing so well. I just wondered what other people's stories are regarding coming off this type of medication.
  4. Hi My husband had a sah (frontal lobe) on 10 april which they clipped and assured us it wouldn't bleed again. Two weeks later he began seizing and they discovered it had bled again. From that point on it was all downhill. His external drain got infected; he had two chest infections; he had a shunt inserted and then taken out because of his chest infection and then reinserted two weeks later. He was in and out of ITC and HDU like a yoyo. They had to change his seizure meds as they couldn't get his seizures under control. I remember on one occasion they couldn't find any veins left to insert a line. He was like a balloon sometimes with all the fluids. He had a trachea, feeding tube and catheter. He got a dvd in his leg. He was pulling his tubes out all the time so they had to put the mits on him. On one occasion they reinserted his feeding tube and accidently punctured his lung! The docs couldnt understand why he was not coming round and felt maybe it was the seizure meds holding him under. He was basically out for 4/5 weeks. Looking back at the diary I kept it reads "sleeping, opened eyes briefly today". He lost 2 stone. In September he went to physical rehab unit and he is now walking unaided. He is now in a brain injury rehab unit to help with his memory problems and last weekend we took him out for the first time in 8 months. His personality, humour and quick wit is all there although there is still some confusion and memory issues. He doesn't remember anything about the last 8 months. Quite frankly even if there is no further improvement we will all be happy because the old Daniel is still there. My husband loves his sleep and I have a theory that a lot of the time he was not responding as he had zoned out to protect himself. Even his fingernails were badly bruised for months where the nurses had applied pressure as he wasn't responding and on one occasion he told the nurse to "f... off" Anyway sorry to ramble on but sitting last night in the rehab unit, watching tv with my husband and our son with the two of them joking and having a laugh together is incredible and I certainly didn't think possible a few months ago. One another point, I did find that you have to be very proactive, keep asking questions and ask to see the docs during visiting. This website has saved me and I hope your brother gets through it. Although its been said a million times they cannot predict the outcome because its the brain so there's always hope. Finally I would like to thank you as you mentioned about acupuncture for your brother and I'm going to look into this for my husband.
  5. Thanks so much to all you guys. Feeling much more positive. Had a good day today. When I asked him where he was he said "in the hospital" which is a first and the speech therapist said that he told her all about his brain injury today which is the first time he's said this to her. Also he told me he was having flashbacks. Much more relaxed today xx
  6. My husband has now been in hospital for 7 months now. The last two in the the rehab unit. Had SAH on 10 April. Clipped on 13 April. Two weeks later second bleed from same aneurysm: either the clip had malfunctioned or the surgeon hadn't caught the full thing, which was then coiled. Things went downhill rapidly after that. Two bouts of pneumonia and a dvt. Anyway having been through the mill we then arrived in the PDRU unit. Now physically doing great. Buzzing round with a zimmer and moving about without it although this greatly upsets the nurses as they say he is now more of a danger and an auxiliary has to be with him all the time. I'm there every day for most of the visiting time ie 1.30 until 8.30. We are now waiting for an assessment to see if he can go to another unit as they feel he needs more cognitive/memory help as it is more of a physical rehab unit he's in. About three weeks ago he had a UTI and then he was still very sleepy/confused. They then discovered his phenytoin levels (he's on three anti seizure meds at the moment) were very high. They have stopped this med (he still on the other two) and he is so much better. His speech is great, he can read, write and draw (he took part in an art class and I was so amazed at this effort - he's never been that artistic in the past). He's definitely remembering more things now and can follow/participate in conversations however he still will not acknowledge that he's in a hospital despite me reminding him 10 times every day. Also the nurses were saying his behaviour has got worse and can be quite verbally aggressive to them but I think he's just now getting so frustrated as he's now anxious to leave and is always trying to escape. Quite honestly sometimes I think I would be better just bringing him home. However I do worry that the two things he seems to remember the most is that he wants a cigarette and a drink (the former he didn't do much but having been in the pub/leisure trade all his life drink is a major issue). I also feel that the rehab unit have slightly written him off in so far as I had to remind the speech therapist that he hadn't had a session with her for a while. We did discuss day passes at the last meeting with his consultant but he thinks its too early and I have already warned him that I think if my husband gets out he will not go back. Sometimes he seems so normal and will be his usual self quick witted and joking and then he will either go off on one or start talking about animals! I also have my doubts about the anti seizure meds which he is still on and if they are having an effect (keppra and lacosamide) however the neurologist have said they will not review this until the 12 month mark. We're just about coping but I feel so sorry for my kids (15, 19 and 21) who have been great but its so hard for them. Apologies for the rant as I feel bad as its not me going through it but just wondering if anybody out there has had similar experiences xx
  7. I feel your pain. My husband had a massive bleed in April. It was clipped and he was sitting up in a chair although still very confused but talking and moving etc when two weeks later he had a second bleed. Either the surgeon had not clipped it totally or the clip moved. He was then coiled. Then the problems started he had two chest infections and was in and out of intensive care, hdu units. He had a shunt inserted and then got an infection and had to have it removed and then reinserted a week later. He also had a DVT. He had gloves on the whole time coz he was always pulling out his tubes. Then he had pulled out his feeding tube and the nurse reinserted it and punctured his lung. Apparently this is very rare. He was sleeping for such a long time. Then he was transferred to a his local hospital in July while waiting for a bed in a rehab unit. He was always trying to get out of bed/chair and it was even suggested that they would have to sedate him at night. I said no they could call me and I would come and sit with him. I felt he had been sleeping for so long the last thing I wanted was for them to sedate him. Anyway we are now in the physical rehab unit in Glasgow and the good news is he only had muscle wastage. I do remember the nurse in intensive care at one point saying there was no movement on his left side so its amazing. They have now referred him for more cognitive therapy. Sometimes he is so normal making jokes etc and other times he is very confused. He will not acknowledge that he is in hospital. He is getting the best help available and they did warn me not to expect the same person. However I feel he is the same person, his sense of humour comes through etc at times. I have kept a diary and this has helped me when I look back and see how many days we just sat there excited when we thought his eyelids had flickered as this was the only movement. We are now waiting on him to be assessed for further cognitive therapy as opposed to physical rehab or else they will send him home. I do recall one of the neurosurgeons saying that they would get him walking and communicating but they could not say if he would be able to have an independent life. However I do believe it is up to the individual and their strength of mind and I still hope he will make more recovery. Our 3 kids have been fantastic but I do feel that they should'nt have had to go through this but I suppose thats life. We had lost a good friend to a brain tumour 2 years ago so we do tend to think we are lucky my husband has survived so far. Sorry for rambling on but your post struck a cord with me ie that total helplessness. I dont know what the future holds but we have come a long way in 6 months but really we are probably only about 3 months into the recovery because of all the set backs. xx
  8. My husband has been in hospital since 10/4/13 with a Sah, (clipped then 2nd bleed 2 weeks later). He was transferred 4 weeks ago to the local hospital while we wait for a bed in the specialist rehab unit at the SGH in Glasgow. He is doing really well, standing up with support and marching on the spot. He can understand, speak, read and write although still a lot of cognitive work to be done. Anyway to get to the point, he is not sleeping well at night and is trying to get out of bed and pull out his catheter etc then he is sleeping all morning. The docs are suggesting giving him nighttime sedation as they feel he is turning night into day. I really dont want him to be sedated as he is on heavy anti convulsants meds and he has been basically asleep for 3 months and its lovely to see him getting brighter now. Just wondering if anyone else has this problem and how they dealt with it. Also my husband has always worked in the nightclub/pub business and is a nightowl at the best of times. Tricia
  9. My husband had a SAH on 9/4/13. He had the clipping at the Southern General Hospital but it wasn't all caught or the clip moved and he had a 2nd bleed 2 weeks later which was then coiled. He had a shunt inserted and then taken out due to infection and then reinserted. He has had chest infections. He had pulled his feeding tube out and when they reinserted it they accidentally punctured his lung. He has now had to move out of the surgical ward at the SG as he doesnt require any more surgery and is in a medical ward at the Victoria awaiting transfer back to the SG rehab unit, where he has been accepted, when a bed becomes available. He has been in the Victoria for the past 2 weeks. I have now heard from the nurses that he is going to be transferred to this Brain Rehab unit in Bellshill until a bed at the SG rehab unit is available hence my question if anyone has experience of this unit. Tricia
  10. Hi Has anyone had any experience of The Huntercombe Services Murdostoun Brain Injury Rehabiliation Centre in Glasgow? I think its in Wishaw. Tricia
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