janey
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Everything posted by janey
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Hi Gemma, Congratulations on your anniversary - my goodness, you have had quite a year by the sound of it, with heart surgery as well as an SAH. I think you deserve a big pat on the back. I know it's frustrating when you realise that you can't do certain things as well as you did before but I think we have all discovered that the healing process from an SAH is a long one and improvements can, and do, happen sometimes after many months and years. You obviously have a very positive outlook and I'm sure this has helped you. Good luck to you and may the next year see you go forward leaps and bounds with your recovery. Jane xx
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Hi Ashley, Welcome to BTG - it's a great site isn't it and it sounds as if you've been reading the posts on here which hopefully will have given you and Kim some information and reassurance on the recovery from an SAH. It sounds as if Kim is doing really well which is fantastic. I can understand how worried you must be about the possible reasons for the white spots on Kim's MRI. Louise is right when she says that doctors need to be more considerate sometimes when discussing things with us. But on the other side of the coin, the doctors are the ones who've saved our lives so we can't be too hard on them! I think they develop a tough skin to be able to cope with all the stresses of their job and sometimes forget that we don't have that, especially after an SAH. My view would be that you really need to push the medics to give you a clear explanation for the white spots, otherwise you'll drive yourselves mad with worry when probably there's nothing to worry about. Go back and see your GP and maybe by now she has had a letter from the consultant about the scan and will be able to give you more detail and reassurance. I think if it were me, I'd ask for another appointment with the consultant to discuss the scan, or maybe consider getting a second opinion if you're still not happy. Best wishes to you both and do let us know how you get on. Jane x
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first post coiling angiogram/ had drinks
janey replied to debbiephome's topic in Untreated/Unruptured Cerebral Aneurysms
Hi Debbie, I'm sure that after all you've been through, it'll be a piece of cake! Try not to worry too much about it, although I know that's easier said than done. It's reassuring to know that they are monitoring you but having these tests and then waiting for the results is a stressful time isn't it. Good luck for 5th and I hope you get a good result. Jane x -
That's fantastic news Lorraine, well done. A huge pat on the back from all of us. What's next! Jane x
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Hi Davis, I had a craniotomy in February and whilst in hospital used to have the sensation that either my eye was watering and running down my cheek, or I was dribbling from the corner of my mouth down my chin. Each time I put my hand up to wipe away the moisture I would find that it was perfectly dry - it was just a sensation. I guess it takes a while for all the nerves etc to settle down and build new pathways after an SAH. Like Gill above, I get an incredibly itchy head from time to time and also a pulling sensation if I frown - so I guess I'll just have to give up the frowning and smile more! I still get a few weird floaty sensations in my head from time to time and I try to avoid loud noises and flashing lights as they tend to make me feel a bit confused. I too have a second aneurysm that they discovered when the first one ruptured. I had a CTA scan in July and saw the consultant a few weeks ago who told me that it was really small, more like a small blister on the artery, and that the chances of it rupturing were tiny. They will scan me every year for a few years to ensure that it doesn't grow but it was a big relief as I had convinced myself that I would need another operation. Do you know what treatment, if any, you'll have on your other aneurysms? Try not to worry about them (easier said than done I know!) and make sure you discuss any anxieties with your consultant. Good luck with the computer - there will be no stopping you now! Jane x
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Hi Geoff, A warm welcome to BTG (or, in VVin's vvords, a vvarm vvwelcome!). I'm sure the site has been a big help to you already, as it has to all of us and it's always good to swap stories and experiences. No matter what scary things are happening to you, there will undoubtedly be someone on the site who's been through the same thing and will give good advice and reassurance. Sounds like you had a really scary time but glad to hear that things are improving now. Be careful not to rush your recovery - it's early days for you yet and you'll get there, but your body does so at it's own pace and will usually tell you in no uncertain terms if you're taking it too fast! You'll become an expert (if you haven't already) in listening to your body. Make the most of life - there are so many who don't get the second chance we've been given. All the best, Jane x
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I will get my stamina back someday, right?
janey replied to Xmartz's topic in Subarachnoid Haemorrhage Discussion
Hi Mandie, Like you (and I suspect most folks on here), I had major fatigue after my SAH. I could not believe how tired I felt and how all-consuming it would be - almost as if someone had flicked my 'Off' switch! I used to fret about going to unfamiliar places as I knew that if the fatigue hit me I would need to sit down more or less straight away. The other thing which I can laugh about now, was that my usual calm and reasonable demeanour would be replaced by an irritable, tetchy and thoroughly bad tempered person. We recently had my little grandson to stay and after a busy day, took him into a shop to quickly grab some food on the way home - poor mite was fine one minute and the next, went into meltdown as he was so tired and I totally understood how he felt! At the age of 55 I too was having the occasional 'toddler tantrum'. Although gradually the fatigue was improving,I had more or less accepted that it would be a part of my life for a long time, maybe forever. However I have some good news! We were on holiday a few weeks ago and about halfway through I realised that I hadn't needed my usual midday nap. I put it down to the effect of the holiday but when we returned home and I went back to my normal routine, I found that I could get through the day without resting and felt fine. It's now been about a month since I've had experienced that dreadful feeling of fatigue. I still get tired but it's what I would call 'normal tired'. I really can't believe how suddenly it's gone! By the way, I had my SAH in Feb this year & I had assumed any progress at this stage would be very gradual but it just shows that after 7 months it's still possible to have a big improvement. As Win says above, 'never give up'. So give your body time to recover as it's still early days for you, especially if this was your second operation. Look after yourself and I'm sure that you will enjoy those long hikes again before too long. Good luck, Jane x -
Hi Bill, Welcome to btg, I enjoyed reading your story - it sounds like you and your wife have had quite a year! You sound like a very positive person and I'm sure that must have helped you lots. It's great that you've made such good progress and are now able to drive again - it's a bit scary the first time you get behind the wheel again isn't it! I know what you mean when you say you are glad to have gone through the experience - I feel the same way too as I know it has enriched my closest relationships and I feel blessed to have had a second chance at life, albeit with a 'wonky' memory! Congratulations on your MRA result, that must have been a huge relief. As you've discovered, this is a brilliant site and everyone is so supportive and friendly, you will always leave the site feeling uplifted and encouraged. I'm still smiling after reading Win's (or should I say VVin's!)post above! Keep smiling & good luck with your recovery. Janey x
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Hi Gillian, Welcome to BTG. Sorry to hear about your 'brain explosion' but you're in good company here as we've all been through the same thing. After such a major trauma, it does seem rather optimistic for the hospital to tell you that you'd be off work for only 6 weeks and I can understand how you are maybe feeling now that you're not doing as well as you should. The big point to make here is that everyone recovers at their own pace and you need to give your body time to repair itself. Don't let anyone (including yourself!) rush you. I had my SAH in February and I've been so lucky in that I've made a good recovery, although still get the dreaded fatigue and headaches. However I still have days when I wonder if I will ever get back to 'normal' and I think Clare made a very good point that we should let ourselves accept a 'new normal'. That's not to say that we should stop striving to improve but we should give ourselves a pat on the back for what we've been able to do, rather than beat ourselves up over what we can't. Progress can seem very slow but if you look back to how you were a few months ago, I'm sure you'll see some improvements. I'm sure you'll get lots of help and encouragement on this site - it's been a godsend to so many of us and it's great to be able to talk to others who totally understand what we're going through because they've been there too. So welcome to the site and good luck with your recovery. Jane xx
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Hi Fay, Welcome to BTG, it really is a marvellous site & will help you lots. Sorry to hear about your SAH but you're in good company here as we've all been through the same thing. I think Louise hit the nail on the head when she said that you need to be kind to yourself & cut yourself some slack. I had my SAH in Feb this year & one of the positives (of which, surprisingly, there are many) that have come out of my experience is that I have learnt to be much kinder to myself as well as to others. Don't put too much pressure on yourself and rather than get disheartened about what you can't do, give yourself a pat on the back for the things that you can. It sounds as if you have very supportive employers which will be a big help to you. Like you I have a second aneurysm discovered when the first one 'popped'. I had a scan last week and will see the consultant hopefully next month and find out what treatment lies ahead. Clipping, coiling or just monitoring seem to be the 3 options depending on the size, location of it. It is rather scary knowing there's another 'unexploded bomb' in your head isn't it but I'm determined not to let it dominate my thoughts & stop me from doing things. Anyway, let us know how your treatment goes and good luck! Love, Jane x
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Hi Clare, I think we had our bleed at pretty much the same time - may have even been the same day, Feb 10th? Just to say that I'm having similar memory issues to you. I very often can't think of a word mid way through a sentence and also sometimes have a sort of mini stutter - usually is worse if I have overdone it and feel a bit tired. Also short term memory not that great, although like Julian it wasn't that brilliant before my SAH. I know I should write things down more often but whether it's stubborness or a sort of refusal to accept that I need to do that, I don't know, but I am getting a bit better at finding coping strategies. I have a weekly planner and write down all the things I need to do as I remember them and that's proved very helpful, especially as we're going on holiday shortly. Know what you mean about the wine - the plus side is that a little goes a long way now! At least we're all still here! Janey xx
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Hi Issy, Welcome to BTG. Sorry to hear you had an SAH but so glad you found this site, it will help you so much with your recovery. There are lots of very generous spirited and wise folk on here, all at various stages of recovering from an SAH so if ever you're worried about an aspect of your recovery, or anything really, just ask and you'll get lots of great advice. My SAH was in February this year and this site has really helped me as I, in common with many others on here, have not had a great amount of support from the healthcare system, so to be able to communicate with others who are going through exactly the same emotions/experiences has without doubt helped to keep me sane! I look forward to hearing more about what happened to you. Best Wishes, Janey xx
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Hello BTG'ers, I thought I would start this topic to give us all a little smile, as it really is unbelievable,(and quite hurtful sometimes), the comments from others that we all encounter during our recoveries. I'm sure you all have your own particular 'favourites' so I thought it would be a good idea to share them with each other - perhaps Karen could award a prize to the best (or worst) one! The comment that prompted me to start this thread was from someone we met at the weekend that we hadn't seen for a while and my husband explained that, since we'd last seen him, I'd had a brain haemorrhage. His response literally left me speechless as he said " well it obviously wasn't serious as you look fine now". I suppose I should have been flattered in a way! Maybe if I'd looked like c**p he would have thought I'd been more seriously ill. Also speaking to people on the 'phone for the first time after the bleed, prompted a few people to blurt out "ooh you sound just the same" - I kind of understand that one a bit more as I think some friends were worried that my speech may have been affected and they were just so relieved I could hold a conversation. Still a bit weird to be on the receiving end of that comment though, I never knew quite how to respond. Anyway, hope those have made you smile (or wince). So let's hear yours............... Janey x
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Carolyn, so glad to hear that everything went ok - you must be so relieved that it's all over and you're back at home. I remember when I was in intensive care after my clipping operation, in between dozing off I used to daydream about just being back at home curled up on the sofa with my husband and the cats and a nice cup of tea - & probably a bit of chocolate too! Cue for Wyn to burst into song 'Little things mean a lot' - but it's true. What we've all been through makes us realise what is important in life - keep your lottery wins, we've all won the biggest prize there is - another chance of life. Well done for being so brave and cheerful - now rest up, keep drinking plenty and enjoy being looked after xxx
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Fantastic news Win, let her know we're all thinking of her & wishing her well xx
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Hi Sub, Thrilled to hear all went well with the scan - no wonder you're both chuffed. I bet Mrs Sub will be really pleased about stopping the steroids too. Happy Birthday for next week to Mrs Sub - any leftover cake will always find a good home with me! Sending you both all good wishes xx
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Hi Subzero, I'm quite new to this site and have just read your amazing story. Wow, you have both been through such a lot and it's so good to hear that Mrs Sub is still continuing to make progress 4 years on - that will be a great source of comfort to many people I'm sure. Just shows what an incredible organ the brain is - before my SAH I hardly gave my brain a second thought (awful pun, sorry!), but now I have the utmost respect for it. So many people say that time is a great healer but it's sometimes difficult to accept this after having an SAH as you just want things to return to normal asap. Sometimes progress can seem ever so slow but keeping a diary definitely helps remind us just how far we've come. Like Mrs Sub, I was prescribed Prednisolone after my SAH, although for a much shorter time and since coming off them about 2 weeks ago I have felt much more emotionally 'balanced', so I hope she experiences the same benefits too. Wishing you both all the best for Mrs Sub's appointment tomorrow - we'll all be rooting for you! Jane xx
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Have you been prescribed steroids?
janey replied to janey's topic in Subarachnoid Haemorrhage Discussion
Hi Clare, Thanks for your reply - I'm feeling a lot better today so hopefully I can avoid a trip to the doctor! It's difficult to know at this stage what symptoms are due to having had a SAH and which are a result of taking/stopping the drugs. I'm off all drugs now so I'm hoping things will settle down a bit. Like you though, my headaches seem to be getting worse, also my memory, although that could be down to the fact that I'm trying to do more so I have more things to forget! Enjoy the Easter weekend, Jane -
I had my ruptured aneurysm clipped on 10th Feb 2015. When I was discharged from the hospital in Italy they gave me steroid tablets to take - Prednisolone 25mg daily and my discharge letter stated that they were to be reduced gradually. Apparently they are prescribed to reduce inflammation. On return to UK I saw my GP who was unsure about how I should reduce the dosage, as was the neurovascular unit who said that it's not a drug that they would normally prescribe. They agreed that I should reduce the dosage by 5mg every 5 days. I took my last tablet on Sunday but yesterday and today I have had major fatigue - much worse than normal - and muscle pains. Also my headaches are worse. Just wondered whether anyone has been prescribed this drug and if they had any similar symptoms when stopping them.
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Hi there everyone, I found BTG just over a week ago so just thought I'd introduce myself. I'm Janey & I live near Cardiff in Wales and had my SAH on 10th February 2015,exactly 7 weeks ago today (am I counting!), whilst on holiday in Italy. I underwent craniotomy and had the burst aneurysm clipped - they also discovered that I had another aneurysm on the other side of my brain. Won't bore you too much with the details here as I wrote an account of what happened to me in the 'Your Story' section of this site, under the title 'A Holiday I'll Never Forget'. Just want to say hello and how impressed I am with this site and the huge emotional and practical support everyone gives - I hope to be able to contribute to this. I've already learnt far more about SAH on here than I've been told by the hospital(s) (I didn't really understand what they were telling me in Italy). I find it really amazing that, given the seriousness of the condition, the majority of us seem to be discharged from hospital with very little information about what to expect. I was afraid to sneeze for the first couple of weeks as I thought the force of it would bring the clip shooting out of my nose! Thankfully I've been referred to a consultant in Cardiff and although I haven't seen him yet I have had an appointment with the specialist nurse at the unit who gave me lots of leaflets - and told me it was ok to sneeze! I can also ring her any time if I have a query, which is reassuring. Anyway it's great to have found you all and I look forward to lots of chats in the future.
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Well done Clare - result! I'm still waiting for a reply from DVLA about whether I can drive or not, so I'll be sure to check their letter when it comes - how long did they take to reply to you? If you fancy a trip to Wales, I'll put the kettle on!
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Ah thank you Win, much appreciated and I'll hold you to the song thing! I've read some of your previous posts and you definitely seem to have a really positive attitude which I think is half the battle. Keep smiling and enjoy the weekend. Jane x
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Hi Clare, What a coincidence, having our SAH on the same day! Did you have surgery ? I hope your recovery is going well. I have noticed a few memory problems, although my memory has never been that great, so I'm making sure I write everything down that I need to remember. The main thing I'm struggling with is the fatigue as I find it very difficult to accept that I get as tired as I do without having really done anything, so I try and push through it but then it really hits me the next day. Look forward to talking again. Jane x
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My SAH happened on 10th February 2015 whilst on a skiing holiday in Italy with my husband. It was a perfect day, blue skies, powdery snow and we'd just caught a cable lift to the top of the mountain & stopped for a lovely cappucino. We decided where we were aiming to ski to for lunch (always a very important decision!) and set off again. I hadn't got very far when I had a small fall - didn't hit my head just sort of fell back on my bottom - felt ok at that point but then heaved myself back up to a standing position and suddenly all hell was let loose in my head. I had a weird sensation of being able to feel my pulse roaring from the top of my back, all the way up my neck into my head, a massive headache, feeling of huge pressure inside my head and nausea. Amazingly I did consider trying to ski down to my husband (who was slightly ahead of me & hadn't seen me fall) but with each second I was feeling worse so decided to move to the edge of the slope and sit down, in the hope that I would start to feel better. Vain hope! I've never suffered from headaches and this one was so intense and sudden that I knew I needed to see a doctor. So I 'phoned my husband (thank heavens we always carry our mobiles with us), explained what had happened and he alerted the piste monitors who were with me pretty quickly. If anyone's been skiing you'll know that when you're injured on the slopes they strap you into a rigid stretcher and basically drag the stretcher throught the snow behind their motorised snowmobile - affectionately known as 'the bloodwagon'. The name was strangely appropriate but the experience isn't great if you happen to be suffering from a SAH ! Anyway, although still in lots of pain, I did feel a bit calmer knowing that I was in safe hands and on the way to hospital. After a bumpy journey down the mountain and a short ambulance ride, we arrived at the local hospital where they did a CT scan and quickly diagnosed the a SAH. As they didn't have the facilities there to treat me I was helicoptered off to a regional hospital with a neurosurgical unit. Once there I was seen immediately by the consultant, given an angiogram and told that I had a burst aneurysm that would require clipping. Luckily I was still conscious, not confused (well no more than normal) and had no paralysis, so they were able to operate straight away. I was also told that I had another unruptured aneurysm on the other side of my brain. The consultant said that they were congenital and I have had them all my life, which I found quite a scary thought - I'd be interested to find out if anyone knows how the doctors can tell if an aneurysm is congenital as I haven't been able to find out from my various searches on the internet. The next thing I remember is waking up in the ICU where I was to stay for the next 6 days. I don't speak much Italian but some of the doctors were reasonably fluent in English so we managed to communicate without too much difficulty. The care I received was amazing - the doctors undoubtedly saved my life and the nurses were angels to whom nothing was too much trouble. During those days I had dreadful headaches, neck ache, eye ache - everything ached in fact but luckily I spent most of the time sleeping and much of the achiness had improved greatly by the time I was transferred to the neuro ward. There I realised just how lucky I had been as I was in a 4 bedded ward and my 3 companions were all bed bound, unable to speak or feed themselves. I was confined to bed for 14 days after the bleed - they were very strict about that, I couldn't even swing my legs over & sit on the bed, I had to lay flat. By that time they'd taken my catheter out so I had to very quickly learn the Italian for bed-pan (padella, in case you ever need to know). If someone had told me that the most useful Italian word I'd learn on my holiday would be the word for bed-pan I wouldn't have believed them! Anyway on Day 17 after the bleed I was discharged from hospital and 2 days later I flew home. That was quite a scary experience as there was a lot of debate about whether I was fit to fly and I really had to keep pushing thoughts about 'what if something happens at 35000 feet' to the back of my mind. Thankfully the hospital doctors had insisted on having a paramedic with me for the whole journey and he was a great reassurance on what turned out to be a wholly uneventful flight. So here I am back at home, wondering if this all really happened to me. I have been SO fortunate in that I have no major lasting effects of the SAH apart from the dreaded fatigue/headaches/general muscle weakness. I feel incredibly lucky to have been given a second chance at life and I am able to draw on lots of positives about the experience - the amazing effort of all those people on 10th March who all contributed to saving my life; The support of family and friends; the kindness of strangers and the lovely Italian ladies I made friends with on the wards - although we couldn't speak each others language, we still managed to have a laugh about the pain of having needles inserted and sticking plasters removed (we decided that 'ouch' is a universal word, understandable in any language). I've done a lot of internet searching since I've been back as I had no advice on discharge other than 'take it easy' and it's been great to find the BTG site as I've learnt so much and everyons seems so friendly and welcoming and, most importantly, has first hand knowledge of SAH and its effects. I had an appointment to see the specialist neuro nurse in Cardiff last week who was very helpful and gave me some booklets and I heard from her today that they want me to have another CT scan to check on the untreated aneurysm. The Italian doctors seemed to think it would be suitable for coiling. I'm in a bit of a quandary about that as I really don't fancy another op (although I know it won't be as invasive as the craniotomy), but on the other hand I don't want to have a 'time bomb' ticking away in my head for the rest of my life either. I guess it's a dilemma that many people on here will be familiar with. Anyway I hope you enjoy reading my story as much as I've enjoyed reading all of yours and I look forward to talking with you in the future.
