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Hi all, Almost four years in and still having broken sleep problems.....taking one Zopiclone a night to sleep. Even now I can't have a "lie in" and this from a man who used to be able to sleep for England! Scott

I wrote that for my OT almost two years ago now, but I'm not in much of a mood to revisit it. So I guess I'll have to stay off the front page I'm never one to use one word where four or five will do......

Welcome to the forum Tracey, I'm sure that you'll find most things on here! Scott

Hannah, I know you go on the DS board, but just in case you missed it here is a recent post from the site........ Dear all, Channel 4 Television's Dispatches programme is investigating the effectiveness of the care offered to stroke victims within the NHS. This will form part of a programme which will examine the finances of the NHS and the effectiveness of the Government's reforms. Dispatches will ask whether increases in government spending on the NHS in the last few years have born fruit in improvements in patient care. We would like to talk to anyone who's had a stroke in the last 18 months, or their relatives, and has experience of the current state of rehabilitative services in the NHS - including physiotherapy or speech and language therapy. We are particularly interested in whether or not people are being asked to wait long periods for appointments. You can contact us on 020 7258 6714, or email thagan@mentorn.tv. Many thanks. Mentorn TV for Channel 4 Dispatches

Karen, Try short cutting it via your local Headway, they can help with issues like those. Scott

One thing that I can remember is that the psy stuff all used to be American based, and that used to upset me. Nickels and dimes, Presidents and Senators....... good job I had a brain injury or it wouldn't of made sense! Scott

Hi, Yep I lost my sense of smell and taste, although we only found out almost a year post SAH. There are tests that can be done for this condition, and some times you can spontaneously regain it all! (I'm still waiting). On the bright side I now eat stuff that I would never of imagined eating before, although the foods I really hated can only be stomached if I don't know what I'm eating! I have a "memory of taste" so if something looks good it tastes good, yes I can taste but not in any real way. Difficult to explain, not so bad to live with. Scott

Sarah, North Hampshire is God's choosen land, but we like to keep it quiet......... Our own self esteem has taken a hell of a whack, and the very nature of SAH (speech, movement, cognitive) seems to be kicking us when we are down. You're only a newbie, and you can recover at huge variations from anybody else who's had essentially the same injury. I've known people who've got up and gone back to work almost immediatley, and then you have people like me who soon will be 4yrs post SAH and no real signs of getting gainful employment. It's a wide spread and you'll fit in somewhere in that spectrum. But don't get too fixated on returning to work, take it steadily and do not push yourself. I hope that by this time next year you are back at work and look back on your year "out" as your lucky escape. But SAH is likely to be with you forever , don't want to sound negative, but we have had a brush with death and come through to tell our story!! My youngest son, Stephen now 10 but 7 when I has my SAH calls me "Brain Damaged" and I can just about live with that. Look around the people around you because some will need reassurance that you are really you, and a traumatic brain injury can scare those who thought they were close to you. Rambling now so I'm going to stop typing.......... Scott X.

Sarah, I still haven't returned to work, I do odd half days here and there for a local charity. But sadly I'm not capable of doing anything more than a four hour day, three times a week. Soon I'll find a way back, but that's the whole point, we have suffered one of the most devestating medical conditions that you can have. I am prone to silly mistakes, and my memory isn't perfect. So I don't think that I can ever return to anything like what I used to do. Hope springs and all that stuff ! Despite having got to the stage where if you met me you wouldn't think that I had any "problems" sadly those problems will expose me 60% of the time. Scott

Scott Naylor This is the story of a SAH and what it meant to me, my wife, my children, my friends, my family, my work colleagues, passing acquaintances, complete strangers, and the people who work to help people in my situation. I guess I had better explain what an SAH is, Sub-Arachnoid Haemorrhage, that means an aneurysm burst in my brain. A brain haemorrhage, plain and simple, well as simple as a brain haemorrhage can be. That's an attempt at humour by the way, well as you will find out over the rest of this the truism "You have to laugh, don't you?" is really true. So back to my story, the early parts of this are unclear to me and I'm not sure that the memories I have of this time are real. You see memory can be a funny thing as, again, you'll find out. My moods change with the wind, my temper is lethal, my mind isn't my own and on good days I won't bite your head off for saying "Hello". Don't ask me a silly question, as I am told I don't suffer fools, not on purpose of course :. This is my story and the reason why I am like I am today. Thursday afternoon, I was moving my office to my house, so in the nature of my life I was trimming the honeysuckle back in my garden. My wife, Sarah (get used to this name as it plays the most important part in the story), was making dinner and the children (Sam aged 9 and Stephen aged 7) were playing around somewhere. I was going to take the children to town after dinner to give Sarah some time to herself, and spend some money on boys' toys as well. Every one was happy, Sarah because I had been paid that day, the boys because that was the last day of school before half term, me because my business was going well and I was in demand both socially and at work. Then something in the world twisted, dizziness, pain, everything was wrong, I staggered into the kitchen from the garden, mumbled "Help me" to Sarah and then I collapsed on the floor. That's it for what I can clearly remember for the next few months, I had had my SAH. From what people tell me the next few hours were hectic, Sarah thought I had been bitten by some insect or other, until I started fitting on the floor. My eldest saw me fit, my youngest was outside so missed that, thank God. Sarah called an ambulance at that time, and was told not to let me get up. I came around apparently and tried to stand, just as the ambulance turned up. The neighbours got involved here, and took the children, no one at that time realised how serious it was. My sister Stevie and her husband Nigel were called, and rushed to the local A&E, Basingstoke. The staffs at the hospital were very good and didn't take offence at anything I said; apparently I was quite annoyed at this time and very rude. They gave me a CT scan and diagnosed correctly what was wrong with me. The next thing I vaguely remember is being transferred to Southampton. Southampton General Hospital, the Wessex very happy that they do. There are various "Neuro" units around the country and there they Neurological Centre, this was the first time in my life I knew these places existed, but I am do some wonderful stuff, really sci-fi, but I am getting ahead of myself. It was early hours of Friday morning when we set off, I remember the ambulance stopping so I could be sick, and them giving me an anti nausea shot and then nothing for a period of hours. Sarah was dealing stoically with this, her husband had had a serious brain insult, was lying almost unconscious and incoherent on a stretcher in this ambulance that was taking her to a place miles from her home and children (who were by now with Grandma and Granddad). Stevie and Nigel were following the ambulance, and panicked when it stopped suddenly by the side of the road. All this so I could be sick. Stevie and Sarah stayed in quarters in the Neuro centre that night and for a few nights to follow. They did receive their first briefing on what was found to be wrong with me. What would happen next! What were the chances for my survival? Sarah has always been reluctant to disclose exactly what was said in that meeting, and if you are reading this you probably have had that meeting of your own by now and know that the chances were that the patient will be OK but, that should be BUT, there are things that could go wrong. The next day I had a Cerebral Angiogram, a procedure where they thread a catheter up through your arteries to the brain, the catheter then releases a "contrast" showing the position of the aneurysm amongst the healthy network of blood vessels in your brain. I mention this, but I have no memory of it at all although I have vague memories of asking questions. Questions like "How serious is this?" the answers were the same every time I asked, and no matter who I asked "This is as serious as it gets". The people that I asked the questions were an apparent never ending line of experts there was an Anaesthetist, a Neurological Surgeon, a Neurological Radiologist, Specialist Nurse, Ward Sister, Physio etc etc. etc. etc. This mean's there was a long line of people who were apparently going to help me live through this. At this point I must mention the "Obs" the every half hour measuring of blood pressure, temperature, and the dreaded "Scott can you tell me who the Prime Minister is? What is the year Scott, Scott can you tell me where you are?" The "Obs" will stay with me forever; I still wake up and mumble "Southampton General Hospital" in the night. The consent forms I do remember, only because I didn't want to bother with them, I wanted Sarah to sign them (an ominous omen for the future), but they wouldn't let her and she wanted me to sign them. That was Friday, Saturday I was to have an "embolisation" and small platinum coils were going to be put into my aneurysm to fill it up and stop the bleeding into my brain. This we were informed was a "less risky procedure" than the traditional "Clipping" which would of involved a brain flap and opening the brain to allow a surgical clip on the aneurysm. The procedure would be done under an "Angiogram" to allow the team to see where they were and how full of coils the aneurysm was. I went down at nine in the morning, and the procedure was done by mid afternoon, however I did not go to "HDU" (High Dependency Unit) until early evening. Sarah was left alone during this time as my sister had to go to work on Saturdays and so until the early evening she had to twiddle her thumbs. They eventually saw a doctor that night that told them that the operation had gone well, they would need to check in six months, but I was out of immediate danger. However I had a "minor stroke" during the "Angiogram", this we did not find out until our first out patient appointment some four months later. BUT the effects were there, a weakness down one side and for a few days I was unable to freely move my right side, in fact those "effects" are still with me today in that my hip is painful and restricts my movement. According to Sarah's diary the next few days went well, I was kept asleep and my blood pressure was kept high again I don't remember any of this. On the Wednesday I needed some Physio to clear my chest, and was on a nebuliser. I had a chest X-Ray, which they brought to my bed!! I had a chest infection and was given antibiotics; again I have no memory of this, or of the visitors that were appearing at my bedside. Over the next couple of days I gradually improved, and the space age monitors next to my bed provided Sarah and Stevie with hours of fun, the nurses in HDU wear a dark blue jump suit and sadly to say I can't remember the excellent care I was receiving. The careful watching of my screens proved to be worthwhile because Stevie noticed a strange pattern on my ECG that was put down to "brain injury". Nine days after the OP and eleven days PSAH (post SAH) I had my central line taken out and more ultra sounds taken of my head, and I actually managed to eat the first semi-solid food since the SAH, jelly and ice cream! The next day I had CT scan on both my head and chest, which were both, OK so I made the move out of HDU and onto "C Neuro". The move onto "C Neuro" was immediate, and without warning straight from the CT scans, this upset Sarah and was the first time she shed tears, I on the other had was oblivious to the trouble I was causing and even had the nerve to ask "Where were you? I've been here ages!" This is the stage where I believe I had the hallucinations, although they could have been at any time since the OP, and boy were they weird. This is where I have my first PSAH memory, one of the nurses on the ward used to order in takeaways on the night shift, and he asked if I wanted anything. I don't remember what, if anything. A refrain of use from memory becoming more and more familiar. My memory once excellent is very shaky, some things I remember clear as a bell, other things might as well of not happened as far as I was/am concerned. I had a week on the ward, a week where I went from not being able to even sit up to being able to walk twenty plus paces on a couple of very shaky legs. I do remember my second visit from my sons, and the look of pure joy on Sam's face as I winked at him when he walked past my curtains. Also the hospital food was excellent, even to the point where my visitors would arrive not to see me, but to have dinner in the canteen! I slept constantly, in short stretches, but you could be sure that if you found me awake you wouldn't have to wait long before I left for the land of nod. This apparently is quite normal, the brain is trying to repair itself during sleep, and the damage that had been done during the bleed and OP (not to mention the stroke) was substantial. The main feeling I had was one of detachment from absolutely everything, from whether I went home or stayed in for the next few weeks. That choice was not mine to make, but with both my Consultant and Specialist Nurse on holiday when it was made I guess the pressure for bed space overrode what was best for both me and Sarah. I don't mean to sound that I disagreed violently with when I went home, because I was in no fit state to even argue that the sky wasn't green, but Sarah felt that we were kicked out with no support at all. That might sound harsh, but consider this, I had had a life changing event that left me weak, muddle minded, unable to climb more than one flight of stairs, and had only been "conscious" for just under a week. Sarah has had no medical experience at all, all the contact nursing that I had received in the last three weeks was totally alien to her, and to expect her to carry that on was unfair. Home, the journey from Southampton to Basingstoke was strange, the car we took that journey in was strange. I had left Sarah with two cars when I collapsed, one not working and one that she didn't like to drive, so she had brought a new one. No big shakes you might think, but I just couldn't get used to the new car on that journey, a fore taste of what was to come in the following days, weeks, and months. Apparently England played a match that I watched when we got home, Sarah said it was "weird" watching football with me not shouting at the TV, you see football was a major part of my life BSAH (Before SAH). I couldn't physically walk up the stairs to bed, so we both slept downstairs (the boys were still at grandma's). I couldn't wash myself, and I like to shower every morning, the problem was I couldn't get into the shower, so again Sarah had to help with that. The next few days both of us have few good memories of what happened, from Sarah feeling helpless to me not feeling anything at all, to being sofa ridden. If the boys hadn't come home that weekend we would probably of gone mad with frustration, that life had come to a complete halt. Again all I did was sleep, and then for good measure I slept again, the whole home life had changed forever. The next week passed in a blur of headaches, dizziness, semi-collapses, and rekindled love for each other. Its fair to say that BSAH we led semi separate lives, Sarah had her work at the Pre-School she manages, she was/is a Beaver Scout leader, she worked at the time running the After-School club, all these things are committee run which means lots of meetings in the evenings. I was treasurer of the local Royal British Legion branch, Membership Secretary of the same, on the committee of the local football club, worked on the bar at the Legion, and on top of all that was Technical Director and co-owner of my own business. I'll give you an idea of what our calendars looked like.... Scott- work and take kids to school Mon-Fri, meetings Tue, Weds evening, watching Stephen play football on Fri evening, working behind bar at legion after that, Sat football in afternoon and bar work in evening, Sun helping at football club car-boot. Sarah work Mon-Fri mornings at pre-school, picking kids up, going to work at after-school club until 6.30pm, meetings on Mon and Thur, watching Stephen at football and taking Sam to Karate on Fri. Weekends she did the paper work that the two jobs stacked up during the week. So you can see that with all the other "normal" stuff added in, we were never in the house. So where was I? Another thing that you should know is that as I am writing this I have to keep going back and looking at what I've already written, so sometimes it may not scan quite right, sorry. OK back to the story. Sarah and I were spending more time with each other than we have ever done in the past (Sarah had taken a leave of absence from all the activities) and we were almost glad that we had done so. Our GP came to see us on the second Friday after I was home, he expressed regret at what had happened, but he didn't know a great deal about the recovery process for SAH, but he would read up on it. He then made a general statement about "getting out", I think he meant to the end of the path and back, but I took it to mean into the car and getting OUT. Sarah says that when I get an idea into my head now I won't let it go, even when I say I have I really am thinking about how to get the idea into reality. She also says that I am a lot better than during this period, during this period if I wanted something it had to be NOW. So when the doctor told me to get out, I took him at his word, and took my first trip into town. Scary, very scary the people around me made me nervous and out me on edge, and I don't know why. The large crowds seemed to buffet me at every opportunity, seeming to pick me out, for bumping into shop doorways became a "hostile" environment. I was walking very slowly, having to make sure of each and every step relying on Sarah to help me through the crowds, after five minutes I had to get out and go home. I was angry, why couldn't I walk through town? Why couldn't I even go into a shop? Why did people insist on pushing at me? Now I can look back and say that I was walking too slowly to be able to blend into a crowd, and there was nothing to show that I couldn't rush and wasn't capable of dealing with a crowd, there was no bandage on my head, there was no physical label on me saying "Take Care Stroke Victim". But at the time it upset us that people could be so cruel, tutting and saying "come on" when I was in front of them in a doorway, or even just pushing past. The whole experience has left us both more tolerant than before, more willing to take a few seconds or minutes to allow someone else to finish first. Car journeys were also very difficult, I took five minutes or more to get in or out of the car, the amount of room I needed was huge, which brings me on to FORMS. Any victim of SAH will be aware of the forms that need filling out, the DVLA, insurance, state benefits, DLA, incapacity, the list seems to go on for ever. I was not capable of either filling out a form or talking to anyone on the phone, something the authorities seemed unable to grasp. We had to fill out forms to allow Sarah to act on my behalf, and then she spent extra hours on the phone whilst they verified this EVERY SINGLE TIME. My situation was complex because of my own business, but this could and should be made easier for people. If you are reading this and are still in hospital, get the welfare office to come and see you. Back to my recovery, I was now able to walk upstairs and so we both went to bed for the first time in five weeks. Our house has no upstairs toilet, so I had to use a bucket; we could and should have been given bottles. Right I don't want you to think that we were miserable and downbeat, most of the time we were happy, only occasionally did we succumb to being down. But at the time it seemed to be one thing after another, the DSS wanted to come and do a home visit, that was fine, the insurance wanted to come and see me, the bank wanted to see me, again fine but surely they could of just asked my doctor? Then came the ITCHES, my god they were hell, my back felt like there were insects under my skin. This is not an uncommon phenomenon, but there are many different ways to treat it, all useful for someone, but not for me, nothing could alleviate the terrible itching. The attacks came and lasted anything up to two hours and this was the one thing I cried about, agony. But apparently they are not that bad for everyone. My doctor was true to his word and read about what I was likely to need, and came and saw me without prompting. The summer holidays came and went without much impact on my memory. This was the hottest year on record, and I would get up and put jumpers on. My internal temperature gauge was on the blink, I could not feel either heat or cold, nor did I sweat. This could have had something to do with the fact that I was still not able to do much physically. The boys were resilient, and seemed to take it in their stride that daddy was not able to play with them, in fact Stephen took quite some pride in telling his friends that his daddy was "brain damaged". Sam on the other hand is the quiet introspective one, so he needed a bit more reassurance that I was OK. Sarah was convinced from the hours after the OP that I was OK, and was going to be alive well into the future. I on the other hand was convinced that I was going to die, I wasn't overly morbid just aware of my own mortality. Every dizzy spell that came, and there were a few, was in my mind another SAH. At this stage I had no memories of anything that the doctors in Southampton had told me, our lifeline was Lesley, our specialist SAH nurse. We called her often to seek answers and reassurance; she never made us feel that we were a burden or that our questions were silly. As the summer holidays drew to a close Sarah had to decide whether to give up work full time, and stay with me, or to return to her busy schedule. She choose to go back to the playschool (her first love) and give up the after school club, this meant that she would be leaving me alone from 8.30am until 12.30pm, four hours! The longest I had been left before now was � an hour whilst Sarah took the boys to school or collected them. Also we got the date through for my first out patient's appointment in a couple of months. At about this time into my life came two new people, Mary my OT and Helen my Physio, they where to make a major change in my life. I am lucky to have had the support from my local health authority; many people have had no such support from theirs. My first attempts at Physio were attempting common household tasks, like making a drink, sounds silly now doesn't it? Mary was there to explain all of the really silly things that had been bothering us from why we had no visitors (people are scared of confronting what they perceive as being "BRAIN DAMAGE") to why I was unable to even ask for a chocolate bar in our local shop (that's slightly more in depth). Mary was our bridge back to a semi normal life. You see I had been left at three months PSAH with a distinct right-sided weakness (Helen's job) and with all sorts of "mental health problems" (Mary's job). Those things that you take for granted like being able to indulge in small talk with friends and family, I couldn't do there was a block there. All the way down to flinching when someone walked past my right hand side, there was and still is a multitude of things I can't do. For one thing I couldn't sit down and tell you this story, way too many things to all drag together at one time, but I can now sit and type this over a period of a few days and weeks. There is a stigma attached to mental health, probably I have shied away from people that didn't interact with me in a "normal" manner, but the stigma from the other side is not funny, especially when you perceive yourself to be "normal". Whilst my friends and family (apart from Stevie and Nigel) did shy away from me, they at the same time wanted reassurance about my state of health. "Is he OK now?" they would ask Sarah in my presence, "When does he go back to work". We used to try and sugar coat the truth, more for my benefit than theirs, with "Oh he's on the mend" and "In the new year", all completely half truths. I used to pick up the boys from school, BSAH that is, and used to talk to people around up at the school, now when we went to the school it seemed that there was an exclusion zone around me and who ever was stood next to me. I used to watch people approach people that Sarah had been talking to and look over in my direction. All they had to do was ask, we would of given them a complete history, or if that was too much we could of given them the "80% of the way there" bullshit. I can't remember specific days when Sarah went back to work, however our neighbour Anne used to come over and support me. Anne's son Alex was involved in a serious car accident when he was a teenager, and he was left with serious head injuries, so she could understand probably better than we could what we were going through. However it was about this time that I had another collapse, and spent the night in Basingstoke hospital, it was put down to "unknown causes" and I was released the next day. I know now that they were reticent about labelling it a "FIT" because if they had done so I would have been allowed only one more "FIT" in the next year before I was labelled epileptic, and I really didn't need another label and all that went with it. You see you are allowed one "FIT" within twenty four hours of an SAH, and then if you have two more within a year of each other then you get diagnosed as epileptic, and are not allowed to drive until you have gone for yet another year "FIT" free. I was due to get my license back in November, but to be honest I really wasn't on any state to drive. So I can vaguely remember calling Sarah about every little thing, and we were now into a habit of going out as soon as she came home. We had Christmas all done and wrapped before the end of September. My condition apparently worsened over the next month or so, to the point where I was severely photophobic, light hurt my eyes, my headaches had got progressively worse and my memory had got to the point where I couldn't remember a conversation from a couple of hours before. All good fun for Sarah, "Well you said you want it!", "No I didn't", "Yes Scott I told you I would be five minutes late today" etc, etc. My GP re-referred me to Southampton in an effort to bring my appointment forward, and indeed the time soon came for me to re-attend Southampton. It was strange knowing that I would soon be in the Hospital where I had been for three weeks, and that in a very real way it would be for the first time. The journey had to be planned to allow me several breaks (my bladder was very weak) and when we got there I felt no feeling of d�j� vu, or even a slight flicker of remembrance. The sliding doors opened up to allow us in, and some things came back to me, nebulous and not willing to come into focus but still there. The visit was brief, and I would be back, I was progressing along ok, BUT I would need a CT scan to clear some things up. This is when we found out for the "first" time that I had had a stroke on the table, so the right-sided weakness became clear. That made me so happy, to have had an answer in a field where there were no clear answers. We made the journey home extremely happy, never before has someone been so happy to be told that they had had a stroke. However, on the way home the lights were a pain, but this was seemingly less important, after all I had lived through a stroke!! My CT scan appointment came through in about a month, and again I have no clear memories of this period of time. The time came again to arrange for a trip to Southampton, so off we set down to the CT suite. I was recognised by one of the nurses, Sarah, although I thought I knew her I couldn't be sure. My Sarah on the other hand chatted away to her like an old friend, this relaxed me prior to my scan. To me this was my first CT scan, although in truth I had been through the procedure many times, it wasn't anything like what I had imagined and seemed rather a let down. We went and had something to eat and then went onto "C Neuro", YES I did remember where my bed was, a breakthrough!!! We left the ward on a high and bumped into my consultant (Mr. Duffield) and Lesley on the way out. News indeed, he had looked at the results of my CT scan and it indicated Hydrocephalus, and I would have to come in for more tests almost immediately. It was Friday and he would like me in on Monday, that quick and sudden that I didn't have time to worry, Sarah has never told me how she felt at that moment. As an aside Eastender's on the BBC was running a storyline that involved Hydrocephalus, and "Nana Moon" well she was due in next week so we would see wouldn't we. Monday came and went, we were on edge about the boys and the arrangements for them with their Grandma, they hadn't missed a day of school through out all of this and that was not about to change. We decide to research Hydrocephalus on the web, not always the best idea as with SAH it had some real scare stories on there, we found a site that helped though. ASBAH I won't put down what it stands for here, but try them if you are going to get or have a shunt for Hydrocephalus, they have children's books that explain in very simple terms what is going to happen "Benny Gets a Shunt" explained to my children exactly what was going to happen. Even though I am ahead of my story, in that part, I eventually went in on the Wednesday, and went onto "E Neuro" only one more (D Neuro) and I would have the full set! I was to have a Lumbar Puncture (LP) to try and find out what the pressure was on my brain and if the fluid was draining away. I eventually had it done on Friday afternoon, whilst I wouldn't call it an enjoyable experience it wasn't that bad. The LP couldn't be finished because I developed pins and needles in my legs, but there was no doubting the results that they had gleaned from the procedure, I had Hydrocephalus. On a more positive note I was allowed home for the weekend. The date was set for my shunt operation, next week, and I would be in for approx one week. You would think that I would be terrified by the thought of brain surgery, but I was too muddled to even be scared properly. Again I was seen by a succession of people explaining what was going to happen, this time Sarah had insisted on being present during every consultation. How was I to remember anything that I had been told? So she was there when I went down, although I don't remember it myself. When I came around on the way back up to the ward I felt instantly better, more able to think, less jumbled, less cotton wool in my mind, an instant result. I wanted to be up and about immediately, but I had to wait for a few hours before they would let me up, I watched the hands of the clock tick around to the appointed time, and I was up and away (and on D Neuro as well!). Sarah has never looked happier, and I think my joy was a bit too much for what was supposed to be a quiet surgical ward. I was rewarded with a private room away from the people who needed quiet and rest. So having had the operation on the Thursday I was up and around the hospital on the Friday, revisiting the wards I had previously been on trying to jog my memory, no luck. That evening as I sat at dinner with Stevie, Nigel, and my great nephew Jack I turned at looked at Sarah and it all sank it, how lucky I was to be alive. I tried to hold back the tears, but later when I was on my own in my room I wept like a baby with the sheer relief of being alive. The next morning Sarah was going to bring the boys in with her to see me, they wanted a burger from Burger King, but they had a sale on at their school first. So I got the morning papers and sat down on my bed to read them, the wards are very quiet on the weekends, when a doctor I hadn't seen before came in. He gave me a quick look over, all the doctors seemed to be fascinated by my right-sided weakness, when he said, "I guess you can go home now." and walked out of the room. I was in shock, this wasn't the way it was supposed to be, and I was supposed to be in hospital slowly going out of my mind! I made sure it was true and checked with the nurses; they confirmed that I could go home when I wanted, so I called Sarah. Now when you've had brain surgery on the Thursday you're not supposed to go shopping on the Saturday, well I did. I went to shop-mobility to get a scooter and off around town we went. I should explain; I had a shaven head, a large dressing on the side of my head, and was keen to see how people would react now, it worked a charm. People couldn't get out of my way quick enough, the sudden appearance of quite obvious brain surgery made quite a difference. I guess I was over reacting to something that had built up inside of me, that I was resentful of the people around me and wanted them to know that I WAS ILL. We had carried on since mid September taking Stephen to football on a Friday night and Sunday morning. The reaction from people that I had classed as slight acquaintances, they knew that I had been very ill but didn't know quite what had happened, was heart warming. Sarah told a few people what had happened to us, and they made me feel that I was brave, a feeling I hadn't thought I was capable of. The obvious sign of what had happened made a lot more people stop and think before they spoke, I wasn't asked when I was going back to work whilst I had the dressing on. I was strangely sad when the doctor took the dressing off. I was now left with a small horseshoe shaped scar on my head, and a two inch one below my chest. I had been very focused on Christmas, wanting everything to be perfect, and now it was here, and it was. I felt extremely relieved to be even alive and was for the first time since I was a small child, truly joyous on Christmas day itself. But the problem was that what was I to focus on now? Although my memories are dim, Sarah and Mary (my OT) tell me that I suffered a dip in my recovery. In mid January my appointment for my check Angiogram arrived for February and this worried me. I had endured at least two Angiograms, before; the problem was I didn't remember them. The leaflet that I had about the procedure had dire warnings about the risks, the research I had done on the web involved many horror stories about the possible outcomes. My belief is that you should avoid the web when it comes to any medical procedures that you may be about to undergo, the web is great, but the lurid side of everything tends to catch your eye. I was terrified for weeks; I probably caused allsorts of problems for Sarah with my mood swings. We packed the children off to school, I gave them a little extra hug, and off we went one cold crisp morning for my pre-op checks down in Southampton. The Angiogram suite had been closed for refurbishment, which was why my six month Angiogram was in effect a nine month check, and we were assured that the equipment was ultra modern and safe. My reaction to the news that the equipment was brand new was entirely negative "My God I'm a guinea pig" was my first thought. The following week I was a bag of nerves before the dreaded Tuesday came, but like death and taxes medical appointments wait for no man. The staffs as normal in Southampton were great, the other patients in the day ward were as nervous as me, well if possible one lady was even more nervous. She was shaking like a leaf in a force ten gale, somehow this made me feel worse. She went down first, leaving me to twiddle my thumbs for a couple of hours. On the ward there were people having allsorts done, a man was in for a Lumbar Puncture; I did my best to reassure those that I could. Eventually my turn came, I passed the nervous lady on the way down, she was at least still alive, and I arrived in the Angiogram suite a nervous wreck. The staff did their best to put me at ease, the equipment was shiny and new, and the room was COLD, they taped off my groin and began. All I can say is that I don't know why I was so worried, even the local jab they gave me didn't hurt, the whole thing passed off with out a hitch. Although I was a little bit worried when they didn't give me a sedative, after all, the leaflet did say I would have a sedative, and I wanted one. The reason they calmly explained was so that I could go home today, I didn't care about that, and I still wanted one. After about an hour of lying there, not as still as the leaflet said, I was told that was it, twenty minutes of pressure on the arterial incision and I could go back up. Whilst the pressure was applied I spoke to the technicians, they showed me the superb pictures that they had taken of my brain, 3D pictures that they rotated and moved through all plains, real sci-fi stuff. I was over the moon and full of confidence when I got back to the ward, Sarah could sense the change even before I was wheeled back to her side. The next few hours are probably amongst the clearest memories I have; I was treated to tea and toast, whilst still prone on my back. We all talked about the procedure, the nervous lady was still nervous even though it was all over, the Lumbar puncture man seemed more at ease, even the nurses joined in the conversations. Eventually I was allowed to sit up, and thanks to the fact that Sarah had brought my medication, my blood pressure was low enough to allow me to go home. We bade the nervous lady and the nurses a fond farewell and got out as quick as we could. Later that night my stomach rose in a quilted rash, not painful but a huge white puffy rash all the same. We phoned Southampton and they recommended a trip to our local A&E and to get them to phone Southampton as soon as we got there. Sad to say our local A&E totally ignored that, they refused to call and we had to get Southampton to call them, I didn't even get to see a doctor, all they gave me was anti-histamine cream and the prospect of a five hour wait to see a doctor. At the end of that day we had seen the NHS at its best and worse, I had woken up to a day when I feared the worse and gone to sleep in the knowledge that I was now allergic to non-allergic surgical tape. The rest of the story is positive, I still have memory problems, hip mobility problems, and still get very dizzy BUT the SAH didn't kill me. My family life has never been better, the debts will take some clearing, but we manage and are still able to occasionally treat the kids. My consultant hasn't signed me off from under his care yet, but he did say at my next outpatients he didn't need to see me for nine months. The support group that I go to on the first Thursday of every month helps, you get to speak to people who have gone through the same as you, and to reassure people that a SAH is not the end of the world. My first year PSAH was one that had many events that I would rather not of experienced, but many that I would never of seen if I hadn't had it. That's not to say I wouldn't change history and not have a SAH, I would, but I don't regret it as much as people think. Thank you for taking the time to read this.

Hi Sarah, My name is Scott, and I too had a SAH back in 2003, and am still slowly recovering! I hope that you will be happy with all of us here in Karen's wonderful little world! As being too talkative NO, you can only really grow by sharing, and sharing is one of the main reason that I've made the recovery that I have! So whenever you have any question at all ask, because between all of us hear we can cover pretty much anything, if not we can always say no and go and find out! Look forward to seeing more from you! Scott

Scary VERY scary, we all to a lesser degree understand how you feel. What is important is how he is going to get through this, do the medical "experts" agree on what has happened? Do they reccomend further treatment? If so my Neuro told me that I wasn't best placed to make any decsions in the weeks following my SAH, and as such my wife took over all of my legal requirements. If he does require medical care then at the extremes of what you can do is to get him sectioned for his own protection. Not quite so drastic is to get someone he "trusts" at this period of time to try and convince him to get the help he needs. My heart goes out to you both. Scott

Hmmmm wonder if this is "clinically significant" ? I too love my V pillow and can not imagine sleeping without one. I made my wife go ALL over the place looking for one! Many years later (well two) I think I still love my wife more than the pillow but it's a close run thing! Scott

Even now going on for four years post SAH I still have times when I'm convinced that the headache I have is really a SAH all over again, same with dizzy spells. Part of the problem is that since it all happened even a small cold can knock me for six, so this time of year it can really get me down. Even tho I am convinced I'm not going to have another SAH, knowing something and feeling it are two completely different things. Although I do have to say that the "good" periods have generally caught up with the "bad"periods and now I have more of them than "bad" ones. Last night we went as a family to a social club to watch some live music, and we all enjoyed it (although I'm not too sure about Sam my 13yr old son). That is something that even six months ago I wouldn't of looked forward to at all. So even 3 1/2 years later progress is still there, but it has slowed down quite a bit! Scott

Sorry Louise.

Hi Louise, I think you've misunderstood me, I've had three appointments for scans and have been sent away because they didn't think it was safe to "scan" me. This time they've said that they are aware of all my medical history and having spoken to "other people" they will procede with it. Scott

Louise, Only by talking about it can we come to terms with what happened. Don't apologise about anything, from the sounds of it we had similar experiences. I agree that our partners and those close to us have the real rough deal, they had to put up with much much more than I know I did. My two boys I can see now have been affected a lot more than I first thought, and I think we're only really seeing the begining of what happened come through 3yrs post event. Sam was 13 in December and is very young for his age in his manner, not a problem as long as Sarah (his Mum) and I remember that. Stephen (10 in July) is much more robust in his outlook, I don't think he realised how serious it was. Scott X.

I've had a call today to say that the Basingstoke MRI unit have finally admited that I can have a scan, after about three months of kicking up a fuss! I believe that the Southampton Neuro Unit (Wessex Neuro) has had something to do with their sudden change of mind. I know of at least four people who've been refused a scan because they had coils. Only thing is now I've got to go into a "closed" scanner and I hate the thought of that as I've become more and more claustrophobic. Still I owe them three cancellations! I hope you are all well and had a good Christmas. I know Keith is well as I waved him across the road in town today (he did a double take but I don't think he realised he knew me). Scott X.

Thing to remember is that having had a SAH we're not best placed to remember what we were told in hospital, well at least I'm not. When I had mine I collapsed and had a fit, but when I came around I was seemingly fully aware and in control of my faculties but the thing is I can't remember a thing about that period of time between coming around and two days later having it coiled (The next three weeks or so are a complete blank as well). So I could of been told lots about my particular condition but I've got no way of knowing. Makes the whole concept of "informed and aware" consent a bit dubious, because in that short period between haemorraghe and coiling I was a completely different person. I've been told I was a nightmare ignoring medical advice, getting up, swearing at nurses and doctors, being rude etc etc All not the behaviour that I would of expected from me but apparently that's one of the symptons or side effects of a ABI (Aquired Brain Injury). (another acronym for you all to get!) Scott X.

Hi Denise, My neuro was quite off hand when he asked me if I smoked (apparently I can't remember most of the early weeks) and said that was the number one factor in why it happened to me. Smoking amongst all the other evil stuff it does to your body thins the arteries and venal walls. So despite all the other risk factors (and believe me there were a few) the guy who knows best reckons that it was smoking that was the number one driver behind the why. As he explained to me later it's not the reason why you had an aneurysm but it is why it burst THEN, as opposed to later or not at all. Giving up was easy for me as I was flat on my back and unconcious for three weeks! By the time I was able to smoke I couldn't remember that I had! As for driving our DVLA (who regulates who can and can't drive in the UK) will take away your license when the SAH occurs and by their guidelines it could be a year before they give back the right to drive. In practise most people will receive it back quite quickly (within months). Personally I didn't drive for over 18 months due to other factors (Hydrocephalus and shunt insertion). I hope that you can have as normal as possible time over Christmas, get plenty of rest and remember you've had a serious illness so take it easy. Scott X.

Hi Karen, Is just another label for what we've been through, if you'd asked me about Brain Haemorraghes 3yrs & 5mnths ago I would of said it was a fatal condition, if you had asked the same about STROKE I would of said that you never recover from it's effects. You'll probably never be able to list everything that people want to know about SAH because it can be so different from person to person. What I like about this MB is that it is not an impersonal list of cause and effect like so many medical sites are. Putting a label on what you've gone through shouldn't be underestimated, I know that I felt a lot better about what I'd gone through when I knew that it was a stroke. People think they understand stroke better than SAH and it wasn't for me that it was important but it made conversation with others easier. When people ask me now what happened I reply "I had a brain haemorraghe and stroke" they 95% of the time key in on the STROKE aspect of it because they can relate to it better. The standard follow up question used to be "Are you OK now?" and as you understand Karen that's not an easy question to answer. Now they ask about how someone "so young" (ie under 60 in their minds but specifically under 40) could suffer something like that. I also think that generally people don't see STROKE as something you can get better from, personally I think the same about SAH but there is no depth of knowledge about SAH out there. So we are helping not only with public awareness of SAH but STROKE as well, after all if you've had a SAH you've had a STROKE. I know that STROKE is an emotive term and some people don't want to think that they've had one. The common preconception of STROKE is an elderly person who's lost virtually all their faculties, we know different. As I said earlier it's another label, and I for one like labels as it lets people know what's happened and what the likely after effects are. Also it allows people to show how far they've come and what to expect along the way. Sorry rant over....... Scott X.

Different kind of strokes, is what I was told. I had a minor "Stroke" whilst being coiled and caused the usual "Stroke" symptoms..... try http://www.stroke.org.uk/information/publications_list/what_is_a_stroke/causes_of_stroke.html If the link works it explains it quite well. Scott

Here we go another opinion! SAH is a stroke. Haemorrhagic stroke as opposed to the more common ischaemic stroke. Roughly two thirds of all strokes are ischaemic which is where the blood to an area of the brain is either blocked or reduced. Symptons are different as are the methods of treatment (you don't want to be given anti coagulants with a SAH!). Shame about the disjointed medical care you received Denise, in this country (UK) you would probably still be in hospital until properly diagnosed. I can't imagine having to of chosen a Neurologist whilst in your position. I hope that you get resolution ASAP. Cheers Scott

Not as I remember Karen! They still had the old style "closed" one when I had my last MRI. The thing is they offered me headphones!!! Just what I really needed was more stuff about my head! They also explained about the mirror so you can see outside, brilliant for any short sighted people like me..... What was superb was the staff in Southampton tho, talked me through it and even provided me with a copy of the scan! (not everyone gets one, but as I was so nervous they promised me a copy) You can of course get your own copy, but they give it on CD ROM these days and you have to cover the costs. I on the otherhand have photographic evidence that I have a brain..... Also all these checks and scans have another benefit, you know for sure that there is no other little suprise coming up in the future! We, once we have had the all clear, know that if nothing else. On the sedative side of it, they do promise in the leaflet that they give out, that you will be given a light sedative but when I asked where mine was they laughed and said "You want to go home this afternoon don't you?". Now I would be nervous about it of course but an Angio is no longer an unknown to me. So don't worry about it, I know that you still will though but hopefully it will be with a little less intensity.

Angio is the standard follow up to see how the coils have settled in, depending on your consultant the time periods can vary. I had mine about 14mnths but that was due to the equipment being upgraded in Southampton. Being a natural born worrier I'm more concerned about the next MRI as I seem to of developed a touch of claustrophobia! Scott