snootybutnice

That's strange - what would they be checking for on the blood I wonder? That's upset me a bit now - I don't want to look forward to another blood test as they always have problems getting any blood out of me and always have to try several times. I come out traumatised I was told they just go with what your doctor recommends?! I sent my info to DVLA last week. How long has it taken you to get a reply from when you first sent in your paperwork? Nic xx

One of the girls on here mentioned earlier that the charge nurse told her: "February and October are 'aneurysm season' and they are very busy with patients who have suffered a SAH. Something to do with air pressure changes. So neuro units do have exceptionally busy times". Unquote! Please give the date of your SAH - it would be interesting to see if there is a similar pattern with people on here. As a start, here's mine: ******29th January****** (just a whisker away from "the season"!). Nic xx RESULTS SO FAR ---------------------- January - 4 February - 4 (LizD noted a further 7 patients admitted in Feb with SAH) March -1 April May - 3 June - 1 (+ 1 aneurysm with no bleed) July - 2 August - 4 September - 4 October - 2 November - 5 December - 4 Info taken up to teechur post

Liz - It's extremely interesting that the two people who have been the MOST positive about their experience in a hospital ward have been from Scotland (see post 3). I wonder if this trend continues...?! I never heard about an 'aneurysm season' being February and October. Mine was end of January so it would roughly fit in. mmmm... I love that they moisturised you after the bed bath - I just got a very ticked off nurse telling me off because I said I needed to go the loo afterwards LOL. Kel - Poor you - I am not surprised you tried to high tail it out so quickly. Your care was clearly so below par that i hardly know what to say - there is nothing that can be said really as it is deplorable - but sadly I'm not shocked. Big hugs xx Winb143 - I'm told that doctors are now finding they have to "prescribe" food and water on patient notes because there were cases of patients getting severely dehydrated etc as the nurses weren't properly checking that they were eating and drinking. (Although I don't know which hospital...all rather vague but held up as being true - and I wouldn't be surprised at all). Nic xx

LOL Louise. Now that's the kind of doctor who has my respect. I have never expected a GP to know everything about all things and it's good that they take the time to look up the info. I know my GP read up on it for me.

Hi Sarahlou Wow - sounds like you had a really trying experience - and the catheter incident really added insult to injury. I do now firmly believe that you're initially best off in a ward with other people if you are really really poorly - as the other patients often look out for you during the times when the nurses miss you. I don't think I'd opt for my own room unless I was starting to recover or could move around unaided. Do you remember that one of the BeeGees died in hospital in their own private room as it was so far away from all the medical equipment that could have saved him? When my brother went to John Radcliffe for his cancer treatment (think it was this one?!) he met up with one of the other brothers from the BeeGees having his cancer treatment at the same time. I think they learnt that private rooms mean nothing - you're just further away from medical equipment/nursing staffs. I'd previously been at the Hampshire Clinic for impacted wisdom teeth and found it brilliant, but when my brother stayed (and died) there, I realised when I stayed with him throughout the night how poor the treatment and care regime was for seriously ill patients. Had I known I would have made sure someone was with him every night. I can totally empathise as well about being in so much pain you resorted to snapping at the nurse. I got snappy and I'm normally so laid back/understanding - but pain has a way of making you become more direct than you'd normally be. I have to say that I think Southampton was better overall than Basingstoke for facilities/staffing - but Basingstoke had more simple food with less rich sauces which was better designed for those who didn't feel like eating. One of the interesting things in Southampton was the fact that they had a Caribbean menu (which British people not allowed to have as it costs more) as well as a Jewish menu. I find it strange that they don't offer everything to everyone - as well as stuff like grapes and other commonly eaten foodstuffs - but then just ask patients to make a small contribution towards things over and above the standard menu. It would help patients, give the hospital more money and would avoid some of the comments on the ward (half serious and half in jest) that it was racist to allow Caribbean people a menu but not open it out to other 'British' patients - because if they'd refused a Caribbean person the normal menu British menu, you could imagine the fuss!! One of the girls who was opposite me in hospital had been to Winchester and Frimley and maintained that Southampton was the best she'd been to from those in the area (a young girl who had suffered several, quite debilitating, strokes). Nic xx

Hi Bagpuss Thanks for your feedback It's good to know I'm not going mad with my thoughts/feelings about the care levels. I totally agree with you that each nurse should have to spend time in hospital to get a good idea of what it's like to be there. I'd think a full day, night and then having to go through the discharge process (where you wait around for several hours to get your meds) would be perfect to give them a good understanding. Re Food: I never mentioned this in my first post, but I found the food in Southampton generally "OK to good" ONCE I felt well enough... but for the most part the sauces were too rich and the thought of eating any of the meals turned my stomach. Consequently I didn't eat anything for the first 3 days - and asked my family to bring in some grapes and ordered/ate some dry cream crackers from the menu around day 4. After that I gradually ate more. I think they need a munch plate, with a few dry crackers, small piece of cheese, a few slices of apple/melon or grapes, plain boiled rice and a small amount of broth with a quarter triangle of bread - or some such thing!! I also didn't feel like coffee or tea - and it would have been good to have the option of a herbal tea. Re Hair washing: Around day 4 I asked if I could wash my hair and the nurse said she'd try later - then I never heard from her again. Later that day I asked another nurse and she was far more helpful by explaining she didn't have time - but would TRY to do it before she left her shift, and told me about a special showercap that they use which I think is heated up in the microwave. You then put the showercap on and gently massage the steaming cap into your hair. I think it has some kind of shampoo in it - which you don't have to rinse afterwards. They use it for brain injured patients. The nurse never came back but the following day I asked another nurse if I could have this cap - and she brought it to me almost immediately (within half an hour!) and I finally got my hair sorted! It's a brilliant invention and I'm surprised they didn't do it for you either. Hi Kaz Thank for your feedback. It does sound like you had a better level of care where you were I empathise totally with the photophobia - I had this when I went to Basingstoke hospital following my Southampton stay, because I had hydrocephalus. The nurses put me in a bed (while waiting to go into a ward) directly opposite the main light - but in their defence they didn't have a choice (although it would have been nice if they'd have turned my bed around for me). Unfortunately even if you pull the curtains the curtain rail is not placed high enough to allow you to block out the light - but then again curtains are designed to give you privacy while allowing the nurses good light. I ended up using my flannel over my eyes to block the light out. Nic xx

You came out of having an SAH and I think, in comparison, the gall bladder op is nowhere near as life threatening or serious. A mere blip in comparison! My sister in law had no problems when she had it done. You got through the SAH so I'm sure you'll come out of this absolutely fine too. It's natural to worry a little but it seems your fears/stress levels are particularly high - so it might be worth speaking to the doctor or surgeon in order to go through some of your concerns and set your mind at rest. Don't feel silly for asking - if it reduces your stress levels then its very valid to have the talk. Best of luck hon. Nic xx

No problem Dawn LOL. Thanks Michelle for sharing - I don't want to make a complaint but I did want to find out if the types of incidences I've experienced were isolated -or whether a number of patients have had similar experiences. The overall level of nursing care was good but not great - say 6/10. Several nurses were great, most were good and a few performed below par. It's little things. When I went to Basingstoke I had the same problem of being made to wait 5.5 hours for pain medication - I was promised pain medication at 5.45pm and eventually got it at 11:15pm by which time I was in tears and in agony as it had been 12 hours since my last meds. I got it because I said I'd call my partner to bring in pain medication from home if they didn't have time to do it for me. They did it there and then. It's just disappointing. I'm not sure if the nurses are under so much pressure and understaffed they don't have time - or whether some of them are just not good at their job and/or lazy or simply have an off day (as they're only human and we all have bad days at work). It would be good to get the real honest low down from everyone - because it feels so nasty to complain about what amounts to petty things (in some cases) when for the most part we are all so grateful for their help, and a good few of them have been brilliant. I'm recovering really well following my SAH on 29 Jan - and hoping to return to work tomorrow for a few hours (well I'll try for 2-3 hours and go gently). I feel very lucky and I'm already down to around 4-6 paracetamol a day. I guess I'm really looking more carefully at medical care not just because this has been my first hospital experience but because I realised back in November that my brother (who I was with when he died from stomach cancer) didn't have as good a level of care as I thought he would have had - so I'd like to really get to grips with what 'really' goes on in hospital - because it's hard to get an objective opinion from just my own families experiences. Nic x

I am extremely thankful for the care and professional expertise provided at the hospital following my SAH, and painkillers aside, it helped me cope knowing that I was surrounded by people who knew what they were doing. The 2 weeks in hospital did, however, allow me to recognise some of the shortfalls of the overall experience - where I think improvements could be made and out of sheer curiosity, I wondered if some of my experiences are shared by some of you too. Southampton Hospital ------------------------- - My biggest bug bear was that my medications weren't given on time. I really needed them spaced out every 6 hours (e.g. 6am, 12 noon, 6pm, 12 midnight) but I got them perhaps 7.15am, 1.30pm, 6.20pm and 10.20pm. Often they were late, sometimes by an hour or more, and other times a few hours early. Because they weren't spaced out appropriately I then found myself needing more pain killers including "oramorph" (a type of morphine but not sure of the spelling!) to top me up when the pain got too much - especially during the early hours of the morning. It was only after I realised the oramorph was giving me slight breathing problems that I started to try and control the times that they gave me the medications so I wouldn't get to the point of the pain breaking through too much - and started to actively ask for the medication during the day and then save my last lot of medication to take it later in the evening to tide me through until the morning. This allowed me to reduce my pain medication and become less reliant on the hit and miss timings when meds were handed out but I felt myself being a pain asking for the medication. In the early days when the pain was worse I'd be in so much pain I'd feel so miserable - and when I'd ask for meds there were several times where the nurses seemingly ignored me and made me wait until the normal trolley came through. - Prior to having a bed bath the nurse asked me if I needed the loo. I didn't think I did, but after 15 minutes of a lovely bath and just as she'd finished changing my sheets I decided I needed to go (something about waking up and having the water on my skin turn cool got me feeling like a wee LOL). The nurse got huffy and told me "I asked you if you wanted the toilet before we started and you said no" - I knew she was extremely irritated from her tone and manner. "Sorry but I want to go now". I wasn't trying to be difficult and I felt like I was a deliberately awkward patient from one of the Little Britain comedy sketches (the one in the wheelchair with the carer!) and I don't think I should have been made to feel bad. - I was given injections to stop me from being sick with the oramorph. Now...I had a canular in my arm (spelling?!) that could have been used...and I could have been given an oral anti-sickness tablet. They never mentioned or offered these options. I'm told by a friend (who is in and out of hospital most days/months as her son is currently losing his battle with cancer) that this was to save money as this injection is cheaper. Why do they do that? Don't they think you're in enough pain?! - I'm left handed and I think it would have been useful to ask me this fact so they could put the canular in my right arm. It meant that everytime I tried to use my left arm (such as to clean my teeth) the alarm went off on the machine - the sound of which hurt my head and which the nurses sometimes switched off promptly and other times left it going for what seemed like 5-10 minutes. - A nurse took my readings and then moved my bedside table (which had my drink on it etc) to the foot of my bed. I think this was Day 2 or 3. This lack of attention was surprising as I was in a lot of pain and had not been given a buzzer (still behind me hanging up) and couldn't ask anyone for anything and was thirsty. Luckily a nurse was passing by around an hour or so later to attend to another patient heard me shouting across and then moved the table back when I asked her. I think nurses should take more care about this kind of thing. - Why do they not automatically put the buzzer near you so you can call them - plus I would say 80% of my total requests weren't carried out in a timely manner e.g. "nurse I need some meds as I'm in a lot of pain"... you'd get 30-60 minutes later where you'd think you'd get assistance in 5-10 minutes. Sometimes a nurse would turn off my buzzer (which I must have rang maybe 4-5 times a day so not excessive I think)...and agree to assist me - only for me not to see them again. One patient opposite me was desperate for the loo and was in tears as they weren't helping her. I got out of bed to try and find a nurse (which killed my head and had my lying down for the next half hour to recover). Poor girl nearly never made it and she'd been asking for it for half an hour. - I just got used to being on a particular ward - but then suddenly I'd be moved onto another ward. Over the space of 1.5 weeks I was moved 3 times (with a 4th attempt to move me which I managed to get them to agree to do the following morning...which they ended up not doing). Why do they move patients around so much? - One very ill woman was badly constipated and they put her on a commode with the curtains around and left her to go the loo. She literally stank out the whole room - I don't mean to be unkind when I say that the whole room smelt like shi*. Honestly, it turned my stomach and I couldn't even bear to drink my water which was left 'open to the elements'. Why do they do that? I asked the nurse since the commode had wheels why couldn't they 'wheel her to the toilet' for privacy and to not stink out the rest of the ward. She apologised, air freshened the room (which didn't kill the smell). My partner visited me 2 hours afterwards and wrinkled his nose with the smell to which I replied "you should have been in here 2 hours ago!". Anyone else have similar experiences?

God Louise - you really have been through the mill. although you did make me laugh about your comment regarding the receptionists - I'll make sure I mention it I've already noticed special treatment. My doctor rang me the other day to go through the events while she was off last week - and said they were chatting about me over their coffee break as they were 'worried'. I felt quite surprised and oddly happy that I'm an interesting case for once. Nic xx

Hi Winb Thank you, i'm so thrilled that you managed to walk after what the doctors said. I'm a great believer in 'doctors don't know everything'!! (verging on distrustful LOL!!). I'm told my eyesight has technically got better and my current prescription is too strong but I now need varifocals - how did that happen I wonder?? (although they did do the test while my brain pressure was at an all-time high so I think that had a part to play - I'll have to get them re-tested once everything settles down). Unfortunately I've become so absent minded of late I've now lost my glasses somewhere anyway which isn't helping. Luckily I can blame it on SAH as I've had hubby looking up and down throughout the house for them Hugs Nic xxx

Thanks Sandi. I can't grumble as I'm feeling quite lucky in comparison to many people as I hope (fingers crossed here!!) that there is not going to be any residual problems once the hydrocephalus settles down. If the SAH had to happen then so far I've got off pretty lightly but a few days without pain would be very good LOL. I hate being so tired too. The only unpleasant thing looming to get through is just a blood sample now. Simple-ish. Unfortunately the nurse at the hospital didn't manage to get enough blood out of me to complete the blood tests so I've got to go back in tomorrow morning for them to have another stab at it. It's like trying to get blood out of a stone when they try and get blood from me - they tried in the hand, wrist as well as arm - hopefuly we're not going to have to go to the feet! I'm just hoping it will be pain free as Im sure the pain from them waggling the needle cause me to throw up on Thursday Louise you mentioned having viral meningitis after an SAH. Were you just unlucky to get 2 serious health problems so close together or is there a possible link do you think? What happened? I'm feeling very tired right now and coming down with a cold so want to be well armed with anything else I need to look out for in terms of symptoms. How did you know you had viral meningitis - just so I can be sure to recognise it if I get it too. Debbie - not heard of Terson syndrome but I'm really pleased you are getting a bit better. You're going through it still but with any luck you'll gradually get even better than you are now. Big hugs xx Nic x

Hi james I tried to complete it but when I said it's been less than 4 weeks since I had the SAH it kicked me off - so presumably it has to be over 4 weeks and under 5 years? Nic

Yep, I'm in this bracket too!! Had SAH on 29th January and was in Southampton Hospital until 8th Feb. No aneurysm found and doctors have no idea what caused bleed on brain. Had lots of pressure/pain in head while there so after c.5 days they did an LP (lumbar puncture) and took around 2ml ****** fluid which helped. Then got lots of pain in base of spine with spasms in my bottom and coccyx area from around 5th Feb + odd tremors in legs and right arm, curious bright red dots happening on forehead which doctors said wasn't anything to do with SAH (but never had them before). More recently had bad pain in eyes on 12/2/12 and optician advised that I'd had haemorrhage in left eye and pressure was building up on eyes, so he referred me to GP to ask them to get a specialist to look at me. I was then admitted to Basingstoke hospital on 16/2/12 who then carried out another LP on 17/2/12 and took around 16ml fluid. Now getting darting pain in right eye + not able to always touch tip of nose when I try to (80% of time I'm ok but other 20% hit bridge of nose or under nose which specialist says is "OK and not to worry about it"). Have another follow up in 2 weeks time at Basingstoke Hospital and then an MRI on 28th March at Southampton. Nic x

Hi all - thanks for your posts really appreciated. Sorry I wasn't able to reply until now, but unfortunately I had another problem crop up earlier in the week and ended up in Basingstoke hospital on Thurs and Friday with another case of hydrocephalus which was putting pressure on my eyes/brain. I was told normal pressure should be 12-18 and mine was 30 when they did the lumbar puncture, so they drained 16ml off. (Took 3 attempts to get the lumbar puncture in, which wasn't so great!). Feeling a lot better now but despite being told by optician that I'd had a haemorrhage in my left eye, I'm now getting more pain in my right eye at the moment but I guess things just need to settle down again. That's my 2nd LP (last one 2 weeks ago) so hopefully it will be my last, fingers crossed, or I might need a shunt. It's put me off booking a holiday for now so I think I'll wait another month to see how things are going before I attempt to arrange anything! Nic xx

Hi everyone, I'm Nicola age 45 and I thought I'd give you my story. I had an SAH 2 weeks ago today. My partner phoned 999 and luckily, although they assumed a migraine, they took me into hospital for tests, just to be on the safe side. They found a bleed on the brain and so transferred me to Southampton Hospital. At Southampton they did 2 scans and found no aneurisym so they could not tell me how/where the bleed came from. Around 4 days later they advised I had hydrocephalus and they then did a spinal tap - taking around 2ml fluid (which was yellowy/blood stained) which helped to reduce the blinding headaches but gave me cold sensitivity in my face - rather like sinusitis pressure around eyes, nose, cheeks, forehead and also around my head. It helped to keep a towel on my head to retain the warmth for the next 2 days afterwards. I also had high Blood Pressure although the readings didn't mean much to me - something like 145 over 80, 170 over 90, 155 over 80. I'm not so sure of the second figure but the first figure averaged around 148-155. Gradually the pain has moved down the spine and settled in my coccyx area - which is great because the headaches are less frequent and less severe but it brings with it very painful spasms/cramps in buttocks and what also feels like cramping pain in the cervix and deep within the coccyx area. When the spasms start it's hard to walk or move. I'm hoping this will quieten down soon as the blood gradually disburses through the body. I went shopping yesterday for several hours (12-6pm) and was really surprised that I felt energetic enough to do it - I had lots of rests/sitting down but other than 3 bouts of headpain lasting around a minute or so, I felt OK and like my old self. However once I relaxed in the car and got home I had problems getting out of the car due to bad spasms/cramps and I still feel very tired today. I obviously overdid it - but when I 'overdid' it in hospital, ie. like walk too far, I would get so much pain I had to stop. It seems that my body wasn't so vocal this time and I paid for it in the evening and today so I now realise I need to pace myself better. Today I decided to get my eyes checked as I'm still getting eye strain type pain and my old prescription hadn't been working for me for a while - so I thought I'd best get it sorted rather than agitating my current headaches with eyestrain. The optician wasn't happy with what he saw, and has now given me a letter to pass to my GP to ensure that I am seen by a specialist within 1-2 days, because he could see a haemorrhage in the top of my left eye, and both eyes are showing pressure to the nerve area (he showed me photos they had taken of my eyes showing all the veins etc, and usually you can see a very defined circle, which is the centre of all the nerves in the eye - but in my photos the circle was not clearly defined and this was due to pressure). He said had I not told him what happened 2 weeks ago he would have been sending me across to A&E immediately. Hopefully if there are any problems these will be picked up. I'm just wondering how many others have had eye problems or the cramp issues? Thanks Nic xxx

I was diagnosed with SAH (no aneurisym) 2 weeks ago tomorrow - and came out of hospital earlier this week. I still continue to get head pain - but for the past week I've been suffering from cramps around my coccyx area and buttocks. The last few days this has moved to also include my cervix. It is very painful and particularly bad if I've been sitting down for a little while or go to toilet then it suddenly starts - and feels like my bones and muscles are being pulled apart inside me. I guess it's the blood still draining and causing problems at the bottom of the spine (the doctors did say that it may start to affect the spine). The doctors couldn't find a reason for the bleed but did say that I had hydrocephalus, and did a spinal tap - which did help relieve the headaches I was having. Headaches are becoming less and less severe so just dealing with these other symptoms now. I also find that I start to get tension around my neck into my head when I've overdone things before I start getting head pain. I also get tingling in my fingers on my left hand (I already had tingling in my fingers in my right hand due to cervical spondylosis which was diagnosed at the end of January). Anyone else have a similar experience? I'm female, age 45. Nic