Slim

I was sure we had this topic somewhere so sorry if I've duplicated. Can't find it. I had my first flight 3 weeks ago, 7months post SAH. I wore Ear Plugs had a pounding headache before I got on. Whilst flying some discomfort around my Omaya Res site (the bump on my head) And a bit were my anni is. But the main prob was headache due to winding myself up the other things could just be pyschosymatic (you know what I mean). On they way back no problems at all. However that night I was in really bad form felt like having a mini bleed but I had just had 3 fantastic weeks in Ireland was pushing myself quite a lot. Unpacked my case, headed to the shops etc when I got home, so think my body may have just given up. On the plus side there always is one. I had been really scared about my Angio the following Wed, but the fact that I was in such bad form left me feeling well I really need to go and get this checked out. So on the flying I will Def do it again but would build in a bit of time either side so you can get a rest. Aine xox

No guys you've picked me up wrong. I'm not intending to sue the hospital, I basically would just like an apology and for no one else to go through this. I had 6 weeks between bleeds, think I had a minor one in between. Although I think I would be more than entitled to compensation as their mistake I feel has cost me quite dearly. Yes I am alive but am not the same person and quite frankly its the attitude that "Stuff" happens that gets me most. The only reason I'm not sueing is because I really don't have the energy, I don't want to be consumed by this but I would like it to be taken seriously and no one should ever have to go through this again. I was led to believe that it is very rare among young people, this site proves different and i've also heard of lots of people in their twenties, what is scarily common is misdiagnosis, which did seem to happen more commonly to people admitted at a weekend, but I have no concrete proof of this so am just going to follow up what I know about. Donald just read over and told me to add a bit. The diagnosis procedure usually involves a scan and if that is inconclusive they do a lumbar puncture. In my case scan didn't show up because of were anni is. The were unable to do a lumber puncture, So with text book symtoms I feel they should have tried something else as they couldn't do a check with the lumbar puncture. I could barely move as I left the hospital ward, I had to get Donald to bring me a wheel chair. I really can't understand how they discharged me in the shape I was in. Called Docs out on Sunday night got more Morphine. But easily that has been the most painful and distressing weekend of my life. Donald says that when i then went back in with the later anni the staff in the neuro ward were very surprised that they had not been consulted given the text book symtoms and the inabilty to get spinal fluid. There is also a letter in my file stating that they are considering changing the procedures so that a similar situation will not occur and that an Angiogram will be carried out in such a case rather than discharged back to GP care. It would have been nice for them to tell me this rather than have it in a lettter hidden in a file. Ta Aine

Yeah Karen Waiting on another appointment, so I think we mighn't get to the wheatsheaf meet. Will wait and see. Thanks Aine

Just did Angio up in Aberdeen. They had to stop. because the tube they were putting up kept buckling or something it wouldn't smoothly go up the vein, possibly scaring from the last time. The doll that did me apparently did the last one. So into the left leg the next time. I was dying for the loo. Don't know about you guys but I cannot use the bed pan, give it a go but complete stage fright, limped to the toilet after about an hour, got a severe ticking of from the nurse. After she explained why, I did understand the seriousness of it Mmmm maybe I won't do that again, but they do say the best things in life are free, and i can't tell you , you can't beat a good Pee when you been desperate. (too much information sori)!

I'm quite optimistic, I've not heard anyone else having such problems, think I've just lost complete confidence in our health service. But at the end of the day it has to be done! Thanks Aine xox

My hubbies really frightened of the Dentist, I hate the noise the drill makes, think I'll take ear plugs the next time. Bit of Saga re angio. See next topic. Take it easy Aine xox

Just a wee report on my follow up Angio. Its 8 months since the Sah, got my appointment, was terrifyied about having a stroke, sometimes the internet is a terrible thing (although it was another patient who informed me of this). At times ignorance is bliss. Upshot is they were unable to perform my anio, firstly they couldn't find the artery had a good couple of pokes though,then got the ultra sound out. Found the artery. Then I needed more anasethic then the tube keep buckling, the Doc gave up after 40mins (I hadn't a clue of the time, she said it had been 40mins of trying). Didn't help when I looked up and saw blood possibly iodine splattered on the camera/scanner. Doc was going to try my other thigh but thought I had enough. Too right I had. In all fairness the Docs and the Nurses were lovely and tried to be reassuring, but it doesn't help when you overhear "now does Dr Such such, remove the sheath????" Any new SAHers don't let this scare you, i haven't heard anyother such horror stories and the theatre nurse did say "yeah you were terrified when you came in, at least the next time can't be as bad as this" :? You gotta laugh. Roll on for my next appointment NOT! Aine xox Had a bit of a day, but didn't die or have a stroke so thats a bonus.

You know I hadn't given the dentist a thought b4. Although I have an odd way at looking at things. I had a serious Vomiting bug, but was delighted to have a different sort of pain. Although was terrified about my angio, but I suppose it has to be done. Good luck. Aine x

Hi Guys, Reading the forums, it seems the majority of us had SAH's before that were mis/undiagnosed. Also some have had the SAH as a complication of a hospital procedure. I was just wondering if anyone has taken this any further, if they feel they were taken seriously or even had an admission of fault or apology. I've certainly been left with the attitude that these things happen, it is difficult to spot but we got it right the next time round so thats ok then. And your alive what more do you want! I am angry about it, this is another stage of the grieving process for the old me. If you are not already bitter or angry, please do not let me affect you. I am trying to get rid of it as quickly as possible just have some of these issues to work through. I don't think it is too much to want to hold someone accountable! Any way, trying to compose an objective letter to the orginal guy who in my opinion cocked up. Will let you know how it goes. Aine

Welcome Pat. Aine xox

Hi Guys. I used to sleep loads before, now my sleep can be very disturbed. If I am over stimulated before bedtime, i.e just have friends who visit late etc I will be awake till about 4.30am ish I find it difficult to shut my brain down. In Ireland I took Sleeping Tabs for a week. Its has helped regulate pattern a bit better. I def need 1 nap in the afternoon though, 1-2.5hrs. Aine xox

I'm def less tolerant, used to very placid. I also find noise can really irrate me and it can be very difficult to handle. I've even started watching some tv with the subtitles. I also depends on the type of noise. Some music I can merrily have blaring. Aine

Hi Jenny I also went of lots of things, although loved hospital food. I now really hate processed things like tinned soup never noticed before. But loved homemade parsnip soup, broth etc. Aine xox I also went off and rarely drink coffee, good while be I touched alcohol and now just a small glass maybe 2 of wine.

Mmmm I'm feeling slightly guilty. I Jenny I worked for the Princess Royal Trust for Carers. They won't have Aneurysm specific information but Carers all have general concerns,Stress, Information, What Benefits?, What Professional do i contact? Grants etc They are on http://www.carers.org. and you can find where you're nearest office is. two other useful address are http://www.carers.org.uk and http://www.carersuk.org Think thats it. Good luck Aine xox

Hi There I'm glad some progress has been made. Good luck to you and your girlfriend for next week. Aine

Hello there Sori to hear you are going through such a rough time it is very worrying. Like most of the folk on this site we have all being misdiagnosed intially. My first bleed they couldn't do the Lumbar Puncture and the Scan was inconclusive. It was the Angio that eventually showed it up. It May not be a bleed but all the symptoms sound like I had. One of the things I regret is not making them listen to me when they discharged me with a migraine the first time. So if you have concerns I would certainly push them. I think they are reluctant to do Angio's as they do have a slight risk as do all procedures, but it took the Angio to show up my problem. So I would say yes push them if you have really concerns. Sori the site is always quiet at the weekend you might get more advice on Monday. Good Luck Aine xox

Hi Thistle, My neck's my main problem area. When I'm in bad form the neck pain/stiffness etc will start long before a headache. Even when I had the main SAH it was the neck that went funny as opposed to the head explosion. I love these wheat bags that you heat up. I don't know if they do any harm but they make my neck feel Fantastic. Aine x

Yeah Vic me too I didn't really get PMT before, now I'm very touchy, I also get a lot of pain in all my joints, back and neck especially and co'ordination gets especially bad. I also get v v tired. My Gp says co-ordination is an issure for all womem at period time, we're maybe just noticing it more now. Aine xox

Hi Thistle Welcome to the site, good to hear from you. Aine xox

I maybe being stupid but what form am I filling in. Is it the surrender you licence one. i though I saw one that asked about the medical condition before. I've talked about this for long enough and am only now getting round to doing something. Aine

Hi Clare, How's your Mum doing? I'm like Karen, I took and still do take things out on Donald. Friends would visit and be chuffed "Isn't she doing great". And I would put on a slight show when folk were visiting and that does use up all your energy. I was also used to being right most of the time. I can't believe I'm admitting this. But I would rarely argue or push my point unless I knew I was right. Were when I came out of hospital I felt people, Donald included didn't trust my input or opinion. A lot of times they were right! But it still hurt. Also if we were out, i would want to pay but of course friends were trying to spoil me. But I found this lovely gesture very tough and disempowering. Now not a problem I'll say you go ahead and pay. But at the time i felt I'd lost all sense of control and my only way to vent this was to explode in anger and of course Donald copped it most of the time. i suppose we feel we can be ourselves with the people we love. Donald just reallyed irrated me when I got home, I felt at one point more like brother and sister, I was trying to score points of him, v irrational. Or he was the big bad warden and i would try and push him to the limit. Now thinking is possibly because I had nothing to do during the day. i was very frustrated, If your mum was a strong personality before, it will be hard for her to relinquish some things to your dads control, and she may resent that i certainly did. Now for me things are a lot better that I'm finding my feet and getting my own independence back. Donald knows I don't mean it. (most of the time) You and your Mum and Dad hang in there. Aine xox

hello there Hellie how you and your mum doing? Yep like the rest of us I was misdiagnosised. Migraine the first time and I still have a pretty big chip about it, now waiting to calm down a bit but I'm definitely writing to the hospital. My Gp suspected a bleed right away and I feel i had all the typical symptoms explosion in my head, worst pain ever, vomiting, photophobia etc. I had returned to work 6 weeks after that first bleed we now know I had 2 other mini ones inbetween as well. I was very angry as i felt relatively unscathed the first time and now have had to go through all this. I'm trying to stop this thinking, its unhealthly and realistically I don't know how things would have turned out before. I would still have had to have an angio and have the coiling done. Sah's being rare, I'm 31 and was told I was v young, unexpected blah blah blah. I've since heard about 4 or 5 other young survivers. And since mine a few folk in my home town which is small have had SAH's!! I also now swear like a trooper and have a temper. I would have used the odd swear world before but now especially if I'm cross or have been pushed its very colourful. My brother and my husband used to wind me up for craic as I was bit of a goody two shoes before. Anyway on the plus side thats calming down now alot. As such just over all I really don't recognise the person I was at christmas. Big cheesy platitude but time REALLY is a great healer. All the best to you and your mum Aine xox

Its just come to be after reading another post, i started walking about 10 days after my SAH. I remember it felt great but I'd an agonising pain seemed to be coxis area. Sounds like siatica. At one point I was sprawled on the floor trying to get relief! Dr simply bent my leg and push against my knee. I was lying on my back. Apparently it was some the remaining blood draining and that irrates the spine. But it does get better. Aine

Hi Hannah, Glad your Mums making an improvement, as everyone says its still very early days, i was on Nimodipine two no vasospasm, but i think I had to come off it early as it give me a high temp. One thing everyone told me is its still early days. I'm 7months, I was home at christmas and I was really out of it, even on St Patricks day (March) I thought I was fantastic but I've made a massive improvement since then. I think I posted that I know I'll never be 100% again, but now I'm like to hell with that, I'm at 99% and improving. I know we all heal differently and your Mum has a long way to go, at one point I had about at 3min memory, but time definetly is a great healer. Hope you and junior are doing well, love to your mum and take care. Aine xox

hi Viv I somehow have missed your first post and focused on the Marfans. Good to hear from you and welcome to the site. Aine