perrycornish

Hi Paul, sorry I'm behind the times on this one. I don't know if it is any help to you, but I had an SAH and was a lifelong smoker ( I have stopped now, I was lucky I think as I was not concious and firmly tethered to a hospital bed by the various tubes and contraptions during the normal 'worst' withdrawal period and so started off well and just said after I got home that I was not going to smoke again, once I discovered that the High Blood Pressure from my smoking habit had in all probability caused the aneurysm to rupture. I decided there and then that I really did not want to go through that again so no cigs at all decreased the risks of that, so it seemed a no-brainer to me;-) Tell Michelle I will be happy to talk to her if she feels she wants to, either on here or in a PM:-D Just thought I would say this so that you could quote from the horses mouth so to speak;-)

Trish and Mollie, the purple cloud of rage from the IOM and beyond just drifted over here;-) My advice is ( and this is from experience of a tribunal, as many years ago I was turned down) you and your advocate need to put in writing your very worst scenario, not the brave face we brits always show. You go tell it like it is girl:devil: Show 'em what you are made of!!Good Luck

Karen, thanks for this thread:-D Isn't it amazing how different we all are, I'm sure it must be something to do with medical history. I now feel more like cross questioning my GP. It was not him who prescribed aspirin and then Clavix for me, but now I can ask for a real explanation, as to me it has never seemed very logical! I have very low chloresterol, was in the past a smoker ( lucky me, my SAH cured that!) with the resultant high blood pressure. My BP now normal as can be and my chloresterol levels still 'well within acceptable bounds' quoting my GP there;-) Roll on when I next see him! My consultants know I am having thinners but I think, why?

Rod, here I am! Complete with shunt!!! It's fine and I think is the one bit of me which gives the least trouble. As Keith said the only person who will know when she is ready to go back to work will be Merril and i feel sure that the OT, Physio etc will help when she might be ready! Most clinicians when they talk about recovery/work etc are talking from a purely clinical point of view, but psychologically there is a long way to go still after a surgical/clinical 'recovery' I am just short of eighteen months post SAH and although it does not apply to me as i am retired, I know I could not do a full day's work and in fact would probably forget where I worked let alone what I was doing! Another thing is clinicians often have no real idea of the workplace, can you imagine the average employer being happy to have back someone who needed support at the level he suggested. I think not even in the nicest workplace!

Ann, that must have made you feel rather 'helpless' but you aren't you know , and I doubt very much if your true friends would think that of you! Personally I have noticed you being very supportive of other members, now that's a good thing but I guess we all have to learn to slow down even 'old retired folk like me!' Very very easy to go too far and push too hard. You will get there, I bet:-D

Hi, Donna, I know it is not a cure but it must help to know that you are not alone:!: I too am in the 'Funny Head Club' careful I might take your reaction to that phrase the wrong way:lol:

John, so pleased that you have at least had the scan now:-D My fingers are crossed for a good result for you:!:

Hello Paul, and of course Hello Michelle too:-D Of course you will help Paul and it doesn't matter why! Just be there for Michelle and she will then know you need her which will help no end believe me. It's mostly long, slow and sometimes frustrating but we can share our joys and worries which is brilliant!

Some of the time,yes much more so than pre SAH, especially if I am overtired or have done too much or sadly eaten a normal size meal!

Tina, I'm so glad that you are now getting some help to deal with this It is so very tough when you have been the cool, collected type isn't it? This reaction to anxiety seems to be pretty much a toughie for a lot of us, I feel particularly annoyed with myself ( which is very silly) as not only did I have a responsible job as I mentioned earlier but was before I retired a counsellor:oops:

John, I'm delighted for you as you can imagine, but we really should not have to kick up a shindig should we? Hope all goes well, I expect mine to be done at the end of this month:-D

Karen, thanks so much for this thread, I bet you are surprised at the replies! Yes, you have guessed me too! I am, to put it very simply just not me any more ( at least that is how I feel on the bad days) I am certainly not a fan of supermarkets, crowds or the like. I never was but it is really quite a lot worse now. I too cannot any longer cope with loud noises or flashing lights.If those kids who live two fields away ( that is how we measure distance, here in the back of Ballygobackwards;-) if they scream just once more, I shall probably commit a crime! Along with these things I think I have probably also got to say that I am not as even tempered as I used to be. Scott and Karen, you are so right about needing to be told these things which is why it all needs to be put together and collated into a Care Package ( at least my consultant has not only agreed to that but has asked me to start the ball rollling here in NI, I will need lots of help, you bet I will:roll: I have just read the thread and am off to think about the whole thing so maybe more another time:-D I am adding a postscript!for all but particularly Karen and Scott, maybe others too for all I know. I have a feeling that the difficulty in talking about and coming to terms with this issue lies in the fact that we were ( I know I was, very got together folk, holding down very responsible posts prior to SAH ( or in my case retirement and SAH) this must make it much harder for us to accept and therfore deal with. Thoughts please anyone ?

Jiohn, that is so hard for you, I too would suggest PALS as it looks as though even the 'right' person is not co-operating as they should. It would be a good idea to have someone support you who is not as closely involved. I shall keep thinking of you, remember I shouted it seems to have worked;-) but for sure it need to be the correct person, don't worry though the Complaints Officer should not ever be someone who is a clinician, so not very likely that it will be the guy who does you embolisation, if by chance it is then you could ask for someone else.

Hi! For sure this will all be worrying for you there is probably not a lot that is worse than the unknown! For sure your husband is in the right place as these guys will really know what they are doing. Sorry that you are so far away from him, visit when you can and in between try us for size, the best part of this site is that the majority of us are survivors, it has been hard but we are all up and running:-D Hang in there and ask all you want to, we will be thinking of you

Hello Sean,are you from here, (Northern Ireland)with a name like yours you should be;-) The memory or lack of it is probably the main difficulty amongst almost all of us. It is frustrating indeed. Your memory of what went on,may come back, or it may not perhaps your brain feels you really don't need to know;) The nurses etc will certainly understand. Try to relax about it all and just accept the tiredness, take advantage of it, rest up when you can and concentrate on you so that the time all those lovely people spent on you is not wasted;-) Good luck, hope to 'chat' again sometime:-D

Rod, as the others have said, the follow -up angiogram is a breeze, I had another one about three weeks ago ( only because I am being an awkward old cuss ( as ever;)) and need follow ups at intervals as my coil is coming undone and I have an unruptured aneurysm. First off don't worry that I am coming unknitted it's rare! The coil you have now , will almost certainly be the one you have for the rest of your life and as we have said the angio is no problem at all, although unlike Holly, I was asked to have an empty bladder lol! I watched the progress on the 'TV' Screen, it was very interesting. I expect your hospital will explain all about the stay and maybe give you a leaflet too, I had both and some sandwiches thrown in

Hello Bessie, I bet you are worried, you have just watched as your Mum had a very serious event- her SAH and the worries about the major mistake in her care. You are bound to be worried, it's a trauma for you too so don't be too concerned about worrying, if you see what I mean. Almost without exception we all have memory problems, some for only a short time, others for much longer, so that is natural fo your Mum. If you are worried just ask, we can soon put your mind at rest as we have all 'been there' and are now functioning pretty well.Try not to just worry on your own and let the hospital make up for their stupid mistake by showing you the level of care of which I know they are more than capable. We are all with you:-D

Me again I'm afraid, I was talking over your problem with confabulation with my partner, Rod, she was very interested and told me that I have been doing that quite a bit since my SAH (I had no idea I was) so this has helped Alison enormously ( and me come to that) although I had not known I was telling tall stories, which is the only way I can put it, she found out as she was amazed that as we have been together for almost thirty four years I told a friend of an occurrence in earlier life, that Alison had never heard before, she was surprised as she reckoned that in all that time I had probably told her more or less everything! We talked and Yep, I too am experiencing confabulation, it was a bit of a shock, but at least I now know and with help should be able to avoid any tale a bit too extreme! ( I wonder now, did I really climb Everest all those years ago? ;-) sorry sometimes my sense of humour gets up and bites! I am more than pleased to have discovered this, I shall try to keep you posted. In the meantime, Rod Good Luck, I too can study Poppy and Karen's advice :redface:

Rod, I have only read about confabulation but I reckon that for you to have such great support from Poppy should help no end, so I will just wish you lots of luck and promise to think about you and you too Poppy, it must be tough. For you Poppy Bon Voyage and go have a ball;-)

Interesting Karen, thanks I do that too and I forget why I have bookmarked things, good isn't it ? lol

Caroline, that must be awful, do you swim at all? That is excellent for strengthening muscle without weight bearing or veering out of control:lol: Maybe a chat with your GP would short circuit the system as he/she could refer you for Physio and I bet that is what your consultant will do in November, (See if you can get in there first. Karens balance ball woould be good too, you can even rest your legs on that ( like a footstool) whilst watching TV or reading etc:-D I do hope it sorts for you soon

Hi there:) I think we sort of 'met' yesterday I thought this would work better, 'tis hard finding your way round sites, and as I found to my cost even harder after an SAH. Sounds as though youare getting some answers and good suggestions. I too hope that your friend improves soon. It must be hard to watch:( I would rather 'talk' like this rather than ghosting in the Chat Room, that was just bad luck for you, that it was so empty yesterday!

Hello and Welcome, Sandie So pleased that you have found us, it helps a lot once you fully realise that a) You are not alone and a whole lot of us are just as forgetful,emotional,headachey, tired etc etc. as you are, it's much easier to be one of many rather than alone The other really good thing is no-one will patronise you and truly understands all the ups and down. Just take your time, the advice you were given was right it is a long recovery and almost a miracle that you were told that believe me! If you wonder, then ask, someone will know the answer. Look forward to 'chatting' again sometime soon

Hello Debbie, so glad you found us, I would have been pretty scared and lonely without the support here The main thing for you i reckon is to carry on reading threads, ask any questions, listen to your body and take your time. When the Drs tell you you are making a good recovery you probably are, they mean from a purely clinical angle, not that you are completely better, it can take quite a long time, just remember that is normal If anything worries you, someone here will be slightly ahead of you and will have had the same concerns but time and support has healed keep checking and keep asking!

Hello John, Good Luck with your letter. It certainly should be answered, as a matter of interest if that fails to get a satisfactory response, it will pay you to go for the formal complaint to the Chief Execitive, they are obliged to take immediate action and find out the why's and wherefores As you know I did get results without having to resort to the law ( an expensive hobby ) Thinking of you