Liz D

Hi Carolyn Gosh what a tough time you are having at the moment. My neuroradiologist told me that I would be less able to cope with stress because of the SAH and he's right! Sending you hugs and as Kel said, I'm sure there's something better round th corner for you. Take care.

Hi Alan Welcome to BTG. What a tough time you and your young family have been through. My children were conseiderably older than yours (22,20 &17) when I had my SAH. It affected my 17 year old quite a bit at the time. I had a brain stem stroke during my coiling procedure which has affected my left arm/shoulder. But to a lesser degree than your wife. I used to work on a stroke ward and I knew I had to work my arm from the very beginning. I could write holding my arm still with my other hand but it left me with quite a headache. I couldn't get my hand to touch the door handle, it was all over the place and I kept (and still do!) dropping things! But with weeks of practice it slowly got better. I also used to get very confused, I would know who I was and that was it! I'd no idea that I was in my house and no idea what had happened. At first it would last for hours, it still can happen now. I was coming back from physio a few weeks ago, on the bus. At one point I'd no idea why I was on the bus, where I'd been and where I was going! But this now only lasts for a minute or two, so I know not to panic (that makes it worse)and that it will pass. I am now back at work (I'm an NHS administrator) and managing 35 hours per week. The brain is an amazing thing! However, it will recover at it's own pace and when it's healing it takes the energy from everywhere else, which is why some days are given over to fatigue! Your wife will have days when she thinks - that's it, it's getting better - then the very next day she maybe can't get out of bed. This is hard to get used to. You and she have to look at how she was after the procedure in June and look at how she is today. The person she was before then has changed and it will take time for her to adjust. Very little improvements are still triumphs, but she is still here and by the sounds of things is doind really well, considering what she has been through! But gosh you have such a lot on your plate and thank goodness for families at times like this! But you must remember to look after yourself! I hope this helps a little, take care.

Hi Mace Welcome to BTG. Gosh weren't you lucky to be there when you had your SAH, when you read of how long some members had to wait to get a diagnosis! I'm 17 months post SAH and still have balance problems. My daughter got married in June and by about 9.30pm I looked as though I had one too many and I hadn't even had one alcoholic beveridge! You are still in the very early days of recovery and hopefully things will improve for you. I had a stroke in my brain stem during the coiling procedure and will always have a little problem with my balance and my gait, especially when I get tired or have been walking for any distance. Looking forward to hearing more from you.

Hi Gill Welcome to BTG, sorry I'm late in posting but am just catching up on all the posts. My inlaws live in Porstmouth and we were there in April to celebrate my husband's stepmother's birthday. It's a very interesting place with lots of history! Take care.

Hi Denisse As far as I'm aware the odd drink or two does no harm. I've been advised not to drink alcohol but there are medical reasons for it. I have had my vertebral artery coiled off as well as the aneurysm, therefore the effects of alcohol would hit me very quickly! I also have problems with my blood pressure and alcohol can have an affect on this too. Also I have inherited this problem and have been told that the weakness that caused the first aneurysm could be present in another artery and that it would be wise not to have alcohol. I tried a very little champagne when my youngest son turned 18. I had a couple of sips and the room started to spin, so I've listend to the docs and don't touch it at all! But many SAH survivors enjoy a social drink without any adverse affects. I can't see any problem if your docs haven't told you what I've been told. But you should talk to your doc if it really concerns you. Enjoy the wedding!

Hi Eddie I'm so sorry to hear about your father. He's seems to be doing ok and can communicate with his family. You have to take this one day at a time. We all recover at different speeds. You have to try and look for small improvements and try not to compare him with how he was before he got ill. Try to look at how he was when he was admitted to hospital and what he is like today. You and the rest of your family have to give him every encouragement,be very patient and give him lots of reasurance. This can be a very frightening thing to happen to you. Are you able to speak with the doctor in charge of his treatment? He should be able to answer any medical questions that you have. As for his age, my cousin had a SAH two years ago, she lives in Canada (I live in Scotland). She was 62 and had one of her aneurysms coiled and the other clipped. But she has been told that because of her age and health now that it would be too dangerous to treat anymore SAH's if she should be unlucky enough to suffer another one. I wish you and your family all the best.

Hi Holly Welcome to BTG. I'm so sorry you find your self in this position but you are in no way to blame. I remember watching a programme last year about a man who had this condition. He was operated on in Bristol and it was made very clear that this condition is something you are born with. The veins and artery are fused together and as far as I can remember it happens during development. It's a dreadful shock for family when a SAH happens. I'm sure it's shock that's caused their reaction, but why didn't anyone at the hospital where he was treated explain all this to his family?! I hope things get better for you.

Hi Janevo Gosh I had forgotten about my tast buds! Most things tasted bland for me post SAH. My poor husband would slave away in the kitchen trying to make something that would tast nice for me, but to no avail! At first I tried adding salt but that didn't help! I think it lasted for about 3 months maybe 4. Before my SAH I was a bit of a chocoholic but not now. I'm like Karen, I'd rather have a cheeseboard than a pud, something that surprises a lot of people! My appetite is smaller and I find that if I have a pud I can feel a bick sickly. My sense of smell has been affected quite a lot and this has had an affect on my sense of taste. Before my SAH I enjoyed a nice hot curry but post SAH all I taste is the chilli and no other flavour, so I now have very mild curries so that I can at least taste something. But this is down to my sense of smell. Isn't so surprising just how many things are affected by a SAH but thank goodness for BTG!

Hi Vonk I'm so sorry for your loss, what a dreadful shock your family have experienced. Gary is right, you hsould make a note of your questions and ask for an appointment to speak with the consultant that looked after your mother, only he/she can give you a full explanation of the treatment your mother recieved and why. I never had a drain fitted as I didn't need one. I too was in a bad way by the time I reached hospital but I was conscious. My body was in shock and my organs were being affected. I've been told that I was their miracle for last year. But my bleed was at the back of my head and that's why I have survived this and have so few problems. I was given statistics by my consultant when I arrived at the specialist hospital. He said that in the UK aprroximately 8500 people suffer a SAH. Of these 15% won't make it to hospital. A further 35% will not survive the first month. He then said that only 10% of people make it to hospital with a second bleed. So the stats are stacked against us. Everyone's bleed is different as is their recovery, if they are luckly enough to survive. But it really depends on where the bleed was, how big the bleed was. Really only the consultant that looked after your mother can give you these answers, your dad's cousin was not in charge of her care. I would urge you to contact him/her. You and your dad need answers so that you can grieve properly and try to find some peace. Take care.

Hi Ben I'm so sorry to hear about your wife. I think it's an awful time for family. I know my children and husband struggled with things at first. People would say to me that I must have been very frightened but I always replied that my family were more frightened than me. It is hard taking it one day at a time but recovery is a slow process and we all recover at different paces. You have to look for very small signs of progress, she's awake and that's a big plus. They can't give you very definite answers because her brain will take it's own time to heal. But you have to look after yourself, take every offer of help that comes your way. Take care.

Hi Denisse I remeber being very frightened and I also worried what kind of life I had ahead and also how much life I had left! You've just come through a major trauma and you are doing really well, I'm assuming English is not your first language, so once again, well done in posting. When did you have your SAH? This webiste is currently being upgraded and the stories of members and their SAHs are being uploaded, so you should be able to read about our experiences in the next few days. You will find a lot of similarities amongst us. You are very young to have had a SAH but there are others on here that experienced a SAH at a young age. I took a lot of insipiration from reading posts of other surviviors who were further on in recovery from me. I took inspiration from how they were getting on with life and work. One person I admire the most is Karen, who set up this website. After all she had been through and survived, she was able to do this! Take care and as had been said before, there is always someone here to listen and if they can they will help.

Hi Ash I'm so sorry your mum has had a stroke. During my coiling procedure my left arm was paralysed for a while. The day after my op I was told that they had no idea what had caused the paralysis but didn't think it was a stroke. I now know it was a stroke in my brain stem. Ash I'm left handed and can write, although I find typing much easier than writing. I have balance problems, I can't walk fast and certainly couldn't run, if I'm going to miss the bus then I miss the bus! But people who meet me now for the first time are very surprised at what I've been through. I had 4 months of pyhsio which helped a lot. I know it's big ask but try and keep your positivity, you never know how it may be for your mum. I hope you see some improvements for your mum, take care.

Thank you Kel. xx

Ho Garyolly Welcome to BTG. I too had a dissecting aneurysm on my left verterbral artery. You are doing really well, it's very earyly days for you! Oh dear as for the tears - I'm 17 months post SAH and have just had a very teary week! But it hasn't been all tears for the last 17 months far from it! I agree thank goodness for famillies, their support is so important. You'll also find this "family" amazing, the support and understanding from them is second to none! Take care.

Good luck for tomorrow. You will be shattered but after you've recovered you'll feel fab for doing it! If I have problems getting to sleep I drink a cup of valerian tea, I buy it in Holland and Barratt. I checked with my GP (I'm on blood pressure tabs and thyroid meds) that it was ik to take it and he said yes. It works a treat and I'm not groggy in the morning. But check with your GP if you're on any meds.

Wow well done Lynz, what an inspiration!

Tina, Paul, Karen, Jen, Sarah and Momo, thank you so much. I was doing so well, with being back at work that this came out of the blue! But you're right Sarah, we do push it to the back of our minds but it knocks you sideways when it comes back! The last time this happened I thought, right remember the signals and remember that it passes! But I didn't see the signs and when I was low I forgot to remind myself that it passes! But hearing from you all gave me the jolt that I needed, thank you. xx I'm feeling much better today. One of the chaps I'm working with, his partner is a friend of my best friend. He got her to phone my chum to say that he thought I was a bit down this week! So she popped in last night and we spent ages chatting about my daughter's wedding! One of the other chaps sat with me for the last 45mins today, just chatting and asking me about what happened, so I told him. He also asked how it was when I came back to work last December and was shocked at how I had been treated. They really are wonderful chaps and I'll be sorry that tomorrow is my last day working in this office. But come Monday I'll be working in the psychological services unit with the psychologists for two months! Not only will I be able to "pick their brailns" but I'm sure they'll be very understanding, so I'm looking forward to that. Thanks again! Forgot to say, yes it's a huge joy that I no longer need any more scans!

Hi I got a letter two weeks ago giving me a follow up appointment for the angio I had in February, even though they'd written to my GP saying everything was fine. I saw the neuroradiologist, Mr Sellar, who performed the coiling procedure. He showed me the scans, the before, the after and the 12 month after. Very interesting stuff. My aneurysm was unusual because it was a berry anni but without a stalk and it was dissecting the artery. The artery had a bend in it (where it should have been straight) and this is where the aneurysm formed. This was why he had to coil the vertebral artery because it would have bled again. They think, going by my history of symptoms, that I may have had about 6 bleeds! Although the first 4 were small bleeds, the 5th the SAH and the 6th a sequential bleed. He believes that I had a stroke in my brain stem which caused the paralysis in my left arm, during the coiling procedure. They had told me they didn't know what had caused it but he says as I am still having problems with it and that I have some balance problems, then this is the most likely reason. The doc I saw last year in the outpatient clinic should have followed this up! I now have to be referred to my neurologist. He also went into a bit of detail as to how sick I was. Apparently I was going into shock which was life threatening. I found this all a bit overwhelming and have been a bit teary ever since! I don't understand why I'm so upset by this as I knew how poorly I was. I remember Mr Sellar telling me that he and his team were on call should they be needed sooner than the planned op. But I think it was when he told me, on Monday, that they needed to give me noradrenaline, it hit me. Yet I'm 17 months post SAH! I suppose it still takes me by surprise when the emotional stuff hits because I think I've dealt with it but it never seems to go away! But on the positive side, he has told me that I don't have to come back and see them again as the artery has completey shrivelled and there is nothing else in there! They're there if I need them or have any questions but I don't need any more scans, YEH!! He also said my children should be checked once they reach 30 because of the family link but that will be up to them once they reach that age. Sorry but I've rambled on a bit but needed to get it off my chest!

Hi Lin-lin Yep you do find out your "true" friends but the ones that stick around are invaluable! But you will also find people in general will look at you and think that you are fine! Because we have no visible scars people don't realise just how hard it can be for us sometimes. Like you, I was always the strong one! I have 5 siblings and it was always me they came to for advice or to just talk. Same in my own family, my 3 children always came to me for advice about life. I coped with everything that came at me and never let it get me down. But since joining this site and reading the posts from lots of others, it's a common trait, strong active people! So everyone thought if anyone could cope with this then I could. And I did, up to a point. Then it hit me about October last year, 8 months post SAH. The tears and the gloom. My husband and me were also having some problems coming to terms with the changes in me and in our relationship. But we sought counselling and it really helped but she recommended that I get some counselling just for me. This made a great difference. What we experience after a SAH is akin to post traumatic stress syndrome. Once this was explained to me and I was told the effects it has, it was a huge relief! What I was feeling was completely normal after what I'd been through. I found counselling really helped. You can access it through your GP, maybe it will help you. I also found this site has helped enormously. I was just so relieved to contact people who understood and to hear from people who were further along in their recovery. When I first started reading through posts I kept saying "that's me" and it made me feel "normal"! But you are still early in your recovery and are doing really well!

Hi John I haven't found any difference, I hardly ever caught a cold or bug and haven't had one yet since my SAH (touch wood!). But your body's having to deal with a lot and it must compromise your immune system. I hope you feel better!

Hi Jan What a worry! Sorry I haven't had anything like this but I hope you get some answers. Take care.

Hi Angela I had my follow up angio in February and was asked similary questions, even told that I wouldn't be allowed to go home by public transport! I live 35 miles away from Edinburgh Western General! I was told that if my angio was done in the morning then I would go home but if it was the afternoon then it would be an overnight stay, it's all to do with having to lay flat for 6 hours and the docs going home at 5pm!. I too was very, very nervous and because of that they took me first and I went to theatre at 8.45. We stayed in Edinburgh the previous night because I had to call at 7am to make sure that they had a bed for me and we would have had to leave Galashiels at 6.30am to get to the hospital for 8am! I was never offered anything to help me relax but would have taken it! But it wasn't as bad as I thought it would be but the feeling of relief when he said "well that's you done" was wonderful! He was also able to tell me then that everything looked good and that was also a huge relief. Good luck and I hope all goes well for you.

Hi Ash Sorry to hear about your mum. I too agree with Paul about keeping a diary. I remember most things about when I had my SAH but I know that people struggle later on when they don't remember. I do remember the fear and pain I saw in my childrens faces. My youngest son took 3 days to pluck up the courage to come and see me (but that was ok as I knew he would be scared to see all the tubes etc) and really struggled with things even after I was home and making a good recovery. But the other two had left home by this time and he later told me that he was terrfified it would happen again when it was only he that was around. I would also suggest that you write down any questions you have and ask to speak to your mum's consultant because it's too easy to forget things when speaking with the medics. Take care

Hi Lin-lin Welcome to the site. Yo sound as though as you are doing well. It's one of the hardest aspects of SAH recovery, when we have to get know the new "me". Good luck with Citizens Advice Bureau, sounds like a really good idea. Take care.

Hi Saffy Janet's right, remember you have had a major operation on your brain and it has to heal. I was told that when the brain is healing it takes energy away from everywhere else and that's why we need so much sleep!So when you feel your energy draining then remember it's your brain healing and it will get better. Also remember you had all the stress of waiting (and waiting) for your op and this will have exhausted you too. So be kind to yourself and give in to the fatigue and rest. Make sure your drinking plenty of fluids, if you get dehidrated you will get tired and headachey. Take care.