kempse

Hi again Scarlett, I was just wondering if there is anyone reading this thread who has been treated at Cardiff and could give you some feedback on their experience. It seems to be a rather stressful situation to be in - have you spoken to PALS and told them of your concerns. I've no idea how the NHS funding is arranged, but it's obviously not as simple as your trust handing over the funds to another one? It seems so unfair that you have the added stress of the possible financing of it:frown: I do hope you get something sorted soon for peace of mind - and trust you are having your blood pressure checked as you wait. Try not to worry too much about the actual surgery - I spent so much time getting myself in a state over it, but I've got through two brain ops now and you will get through yours too. I hope you have got supportive family and friends around you too - either way, there is always BTG to turn to! Keep in touch, Sarah

Hi Scarlett, I, too, am sorry you are going through all this which is causing you a lot of anxiety. Would it be an idea to make an appointment with your GP to discuss your worries if you haven't done so already. I appreciate you feel your nearest hospital have let you down, but wondered what in particular made you ask about Liverpool with it being quite some distance from you. I personally wasn't treated there so am unable to make any comment, I think however that I would be happy to attend any hospital in the uk that specialize in neurosurgery. I am currently being monitored in Sheffield for an unruptured aneurysm, plus a wide neck on the one that ruptured which may or may not develop into another aneurysm, so I do appreciate to some extent how you feel. I presume once you have decided on a hospital, then your gp would be able to refer you? I'm sure then you would hopefully start to feel a little more reassured about the situation. Best wishes, Sarah

Happy anni versary Steph and Wem. I hope the next twelve months are a lot easier for you both. Best wishes, Sarah

Hi Amy, I was treated at the Royal Hallamshire following my sah in 2008. Definately a lack of information on discharge. The only thing I can remember being told was not to search American websites for information as I would scare myself! I was also told that I could drive as soon as I felt able (no mention that I had to inform DVLA and get their permission). Obviously I was still searching information a year later as that is when I came across this website which, through personal experiences of others, has been the most help. I was given a ' Brain and Spine' leaflet at the Hallamshire following my 2nd coiling a year after the bleed, but I was asked if I could return it when I'd read it as they were in short supply. Access to a specialist nurse afterwards, to be able to ask questions or talk over concerns would be ideal. I think, therefore, that what you are trying to achieve is a long awaited, but very essential and extremely worthy cause - I wish you well in your venture. Sarah

Hi and a warm welcome to BTG. Sorry to hear you've had the misfortune of suffering a NASAH, but glad you have found this forum where there is a lot of advice and support. Regardless of which side of the Atlantic you are, it appears that the emergency response is not always what we would hope for, or expect. I, too had an unacceptable experience. At the time of mine (Nov 2008 ), I had not heard about Jill Taylor Bolte, but like you a 'stroke' came to mind and whilst it was happening, (with hindsight I could actually feel the blood escaping in my head) I called 999 sensing I was about to pass out. I did not pass out, but told the operator to hurry up as I thought I was having a stroke. The ambulance arrived within a few minutes, but the paramedic, after a few checks, left me at home:frown: I knew that headache was not normal and over the next few days I called the Doctor to the house, visited the doctors surgery, rang NHS Direct (a telephone health service in the UK), visited the optician on the advice of the doctor and then finally it was my parents who rang the gp and persuaded him it was serious and needed further investigation. So, six days later, I got an appt at a neuro outpatients clinic at the hospital and like you, I had a five hour wait before I was seen. In fact I think I was quite lucky even at that point to get a scan, as the consultant commented "well, I'm not sure which box to tick, so I'll send you upstairs for a CT scan". I didn't get out again until 11 days later having found a ruptured anneurysm. As a result of the delay I suffered severe vasospasm (apparently the worst my radiologist had seen or so he told me on a subsequent visit) and I also have a small area of infarction. Whilst I was very fortunate that none of this left me physically disabled, I do wonder if the residual symptoms I have had were caused by the initial delay. The only thing I managed to achieve following this, was to get my gp to write to the ambulance service to point out this mismanaged incident to the paramedic in the hope that he may not make the same mistake again. I didn't have the energy to do much more at the time. Wishing you all the best in your continued recovery, Sarah

Hi Tony and a warm welcome to BTG. You've definitely stumbled across a good site for information, help and support following a sah. It was 4 years last November since I had mine - I'm 51 and a mother of 3 - so recovery in that first year was pretty hard going. I returned to work 5 months after the bleed, which wasn't too bad as I was only part-time anyway. I'm not sure I would have coped so well if I'd suffered from constant headaches though - sorry not to be able to give you any advice on that. I did however suffer from extreme tiredness and that, for me, continued for 3.5 years. I work more hours now - in fact I have 4 different jobs now with a 5th one every so often. I think I only got to this point by being lucky enough to be able to stop and sleep almost whenever I needed to which I believe helped my brain heal. Unfortunately there is no standard pattern or time limits to recovery as we are all different, although it appears that improvements can and do happen months, even years later. I think when we are given a time frame by the medical profession, we then perhaps assume we should be 100% when the deadline arrives - I don't think it works quite like that, so don't be disheartened if you get to the 12 month mark and things are not quite how you expected. Wishing you all the best, Sarah

Hi Bluescat1, welcome to BTG. Thanks for posting your story - it sounds as though you are doing pretty well after all you have been through. It took me 3 and half years to manage without those afternoon naps! I think we, in the uk, are very grateful to have our treatment free, especially as treating aneurysms is so expensive. I wish you well in your continued recovery, Sarah

Hi Fern and a warm welcome to BTG. I really do empathise with you, having experienced being absolutely petrified when I had to go back in to have more coils placed in the aneurysm that had ruptured. I also have a 3mm unruptured one which was discovered at the end of 2008 when the other one ruptured and it has been monitored annually since then. Mine appears to have remained the same size since it was discovered and I was told last October that I do not need scanning again until Aug 2015. I am not a fan of statistics, I think they just cause unnecessary anxiety. It is not an easy decision to have to make, but I think I would go on the guidance of your neurosurgeon. If you decided to have it monitored, I personally think you would possibly worry more, wondering if and how much it might change/grow between scans whereas the anxiety of waiting for a coiling procedure would be much less time wise and would take away the risk and worry of rupture. I know I could be faced with a similar dilemma in the future and that possibility alone scares me. I have been told that mine is not suitable to be coiled but would have to be clipped and I think for me that is more terrifying than coiling. Wishing you all the best in making this difficult decision. Sarah

Hi Barry, Welcome to BTG. Sounds like you are doing pretty well - any less stressful job has to be good! I too suffer with memory problems which at times seem to be getting worse:frown: I find it quite annoying and frustrating - earlier this evening I was at my Mum's house, telling her something when the conversation was interrupted by my daughter ringing my mobile. I took the call which lasted about 30 seconds, but could I remember what I'd been talking to my Mum about? No and what's more she couldn't remember either! Whilst she is in her 80's and could be forgiven, I spent the next 15 minutes racking my damaged brain trying to recall any of the conversation - eventually I did remember but it was hard work!! If you get any tips for improving memory, then pass them on:-D Sarah

Hi Bev, Just came online and read your news and just wanted to say how sorry I am to hear about the avm. It will obviously be an upsetting time for you - I remember how upset I was when I got the letter saying I had to go in for re-coiling - I could have filled the bath with tears! However, time doesn't stand still and you too will, in due course, be able to feel the eurphoria that it has been treated and life will become more relaxing (not that it ever is that relaxing with kids!) Take care, Sarah

Wishing you and your Mum a healthy and happy 2013. Well done for getting through a difficult 2012 with such a positive attitude:-D Sarah

Thanks for sharing your story. It's nice to hear that the medical professionals were on the ball in your hour of need. In fact it's one of the few stories I've read on here whereby they have been so efficient. Their swift action is what you would expect in a medical emergency - unfortunately, in my case, both the paramedics and NHS Direct were useless. But despite a 6 day delay in getting to hospital, I too am grateful to be here to tell the tale. I hope you're not waiting too long before you learn more about Sid and Nancy! Take care, Sarah

Hi Inez and a warm welcome to Behind the Gray. I'm sure you will be glad to have found this site so early into your recovery as there is a wealth of information on here and being amongst others who have been through a sah can be quite comforting too. Having an aneursym rupture is bad enough, but learning you have others does come as a bit of a shock. I have one other in addition to the one that burst and that has been monitored annually over the past 4 years - in fact I've recently been told they don't need to scan me again until Aug 2015. Try to be reassured that they will keep an eye on those other annies, unless of course they treated them all at the time of the sah. Either way, I wish you all the best in your recovery. Sarah

Nice to hear from you Lynne, but sorry to hear you've got problems with your joints. So glad you're getting plenty of support though - that goes a long way to remaining sane! I hope you have a lovely first Christmas with Osian. Sarah

Hi Kel, Having joined this forum at the same time as you, I feel as if we were brought up together;-) Even in those early days, your posts were always cheerful, witty and positive and it's great to read this latest thread. I hope your cold disappears soon and you have a super evening on Friday - you deserve it:-D Best wishes, Sarah

Lovely to hear:-D All the best for the coming year, Sarah

Hi Claire, You must be so exhausted and frustrated by all this - and it not right that you feel you are having to fight so hard for your own healthcare. I'm not sure if you will not be seen until they have caught up with their backlog, or whether that's just your assumption - either way, you are understandably concerned about the whole situation which, having re-read your other post the other day, has been a long drawn out nightmare for you. I mentioned PALS on the other thread and wondered if you feel that they may be able to help in any way. If you google PALS and click on complaints, you will be able to judge whether that is a possible route for you to take - at least they could take some of the stress away from you and you wouldn't feel quite so alone if you had someone fighting your corner with you. Plus you could copy and paste your posts on here so that you don't have to repeat it all over again to them. I presume you are still suffering with the symptoms you mentioned in your previous posts? I know when I have assumed that my aneurysms have been the cause of some symptoms that I've had, ie. visual disturbances and a single episode of double vision (my unruptured one being very close to my opthalmic artery) I was told after yet another scan, that this was not the case - so it's all a bit mind boggling and not very reassuring when we still don't know what does cause the symptoms if the aneurysms don't:confused:. Good luck, but stay calm - you're doing well, Sarah

Hi Claire, I, too, am sorry to hear you had a bit of a breakdown this morning - there is little wonder, what with the news you've recently had, the lack of sleep and the fact that this has been going on so long for you. I think you deserve a medal for perseverance! Hopefully if you have managed to catch up on some lost sleep, you will feel stronger and better prepared to continue trying to get the answers you deserve. I know from personal experience that neuro departments aren't the quickest and I don't think they can possibly realise how any waiting we have to do, or delay in hearing something is an awful thing to have to go through. My last scan, for example, was done on 17th July and my follow up appointment to get the results was on 24th October - a long wait wondering and worrying:crazy: They did admit along the way that my results had got lost in the system -it wouldn't feel as bad if they were only dealing with our big toes! I think it's difficult/impossible to control our emotions when uncertainty is hovering over us, but much of it is caused by the "unknown" and the "what ifs" and quite often those aren't always as bad when we have the facts. Again, I wish you well and take care, Sarah

Just wanted to wish you all the best for tomorrow:-D Sarah

Hi Claire, I can understand your emotions being all over the place when you learnt about the aneursym and I hope your appointment is soon so that you can get some reassurance regarding this. I think (and it is only a think) - that fusiform refers to the shape of the aneursym:confused: I know how the discovery of aneursyms can make you terrified, but after your appointment, you will hopefully become more knowledgeable and settled with the situation. After I had my rupture, they discovered I had another aneursym and this has been monitored each year since it was discovered in November 2008. It is a fraction bigger than your own (3mm) and as it has not changed at all in those 4 years, I was told in October this year that they don't need to scan me again until 2015. I am therefore assuming that they expect it to have remained stable for a total of 7 years at least. Whilst all our cases are different, it does not necessarily have to mean that aneursyms equal imminent danger - or at least that's what I tell myself! I wish you well at your appointment, Sarah

Well done Mikey on your achievement - it was very brave to venture out on such a trip - and you did it:-D I hope there is no stopping you now and as you gain more and more confidence you will try more outings and continue to enjoy yourself. Best wishes to you and your daughter, Sarah

Hi Dawn, So pleased you have this new role to start on 3rd December and that it will hopefully suit you much better - more importantly make you feel much better! I hope it all works out for you, good luck, Sarah

Hi Debbie, Apologies for taking so long to say hello, but welcome to BTG. I sense your latest visit to the hospital has got you in a bit of a flap - the same sort of flap I got myself into when I was told my coiled aneurysm needed redoing because blood was still entering it. They were able to put more coils in mine, so I'm sorry I can't help you with the clipping procedure - did they explain the reason why they didn't want to, or couldn't coil it again? I know the news you received is a lot to take in and can send you into turmoil. I also know it's horrible having this type of decision hanging over you and playing the waiting game is pretty awful too, but whether you decide to go ahead now or after an MRI in March, you will afterwards feel such relief and be able to relax more knowing it is secure. I have a second, unruptured aneurysm and although they consider it to be stable, at least until 2015 when they next want to scan me, I was told a month ago that if that one should ever need treating it would have to be clipped and just the thought of it unsettled me, so I do empathise with your situation. Remaining strong really will help and with your Mum around I'm sure you will be getting much love and support to help you through this. Wishing you all the best and look forward to hearing from you again, Sarah

Well done with the meeting Dawn. The fact that you've come out feeling so much happier is great to hear:razz:. Whatever transpires, I hope it works out well for you, Sarah

Hi Steve, Apologies for being a bit late in welcoming you. It is very recent since your event, so sleep, sleep and more sleep will be on the agenda as you and your brain start the healing process. It can be a slow process, but be assured, things will improve, albeit at a slower pace than you might wish. I'm sure you will gain plenty of advice through this site that has helped so many of us along the way. Gotta dash, (work:frown:) Take care Sarah