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Everything posted by kempse

  1. I'm sorry I missed your 5th anniversary Michelle, so it's belated congratulations for reaching another milestone. I'm glad you have come out the other side from having some mental health issues with such determination to move forward which is not always easy, I know. Your contributing posts on here are always warm, sincere and written from the heart. You will have helped many fellow sahers during the past 5 years whilst overcoming the struggles in your own recovery which is admirable. It's lovely that you and Jan have met through BTG and have developed a close friendship - long may it continue. Take care and keep strong, Love, Sarah
  2. Hi Jessica, I too am very sorry to hear your daughter suffered a sah at her tender age of 7. I can't imagine how awful that must have been for you both. It's not helped by the fact that there is hardly anything on the internet regarding children who suffer an sah. I would suggest writing down any queries or concerns that pop into your head as and when they do and then take the list to your next appointment with her specialist. Whilst 7 year olds are usually very active, I would imagine that she will become very tired after little activity, just like us adult sah survivors do in those early months and like the majority of us, she won't necessarily recognise when she needs to rest. Sleep, rest and drinking plenty of water definitely help the brain heal. Sorry I can't comment on stents as I didn't require one. I hope her recovery goes well.. I wish you both all the best and do come back if you feel you need any support, emotional or otherwise - we're a friendly bunch with combined personal experiences of sah together with what can be a rather long road to recovery. Best wishes, Sarah
  3. Hi Bill, Glad to see you have returned to BTG and have managed to overcome some of your difficulties. I was around when you joined and if my memory serves me correctly, you were at Donna's pub in Nottinghamshire when some of us met up a few years ago? Sorry I can't remember the name of the pub, where exactly it was or even which year it was! Best wishes to you, Sarah
  4. Oh Joan, I'm so sorry to hear that your op was cancelled, that's the last thing you need to happen. My second coiling was cancelled on the day I was due to go in, so I can appreciate the anxiety and frustration, etc that it causes. Hopefully you can get your blood sugars to an acceptable level before too long and then get the operation out of the way. Love, Sarah
  5. Congratulations Weedra on your 3rd anniversary. Lovely to have you in the BTG family and you never know, you may meet other members of the family one day! Best wishes, Sarah x
  6. Happy 13th anni-versary Karen - what more can I add that hasn't already been said. A lovely photo and inspiring words x Thank you so much for helping so many x Love n hugs, Sarah x
  7. Hi Joan, Sorry, but I missed this thread until the lovely Tina contacted me. I'm pleased you got a date through which is not too far away - hopefully you will manage to keep the nerves in check during that time. My thoughts will be with you on 2nd August. I have not heard anything from the hospital following my scan on 7th April, but on a recent visit to my GP for something else, I asked if they had had any correspondence from the hospital. They had received a report and I was informed that there were no changes since my previous scan and they would scan me again next April. I'm not overly impressed that the hospital hasn't bothered to inform me though and I only found out by chance. My Mum passed away 3 weeks ago, so I really am grateful and relieved that no more coiling is required at present as I don't think I could have coped with the stress of that as well. Looking forward to hearing from you after the procedure - sending love and best wishes in the meantime, Sarah
  8. Congratulations on reaching the 4 year mark Michelle. I know you had some testing times over the past year in particular, but you still manage to help others on here - I hope you've had a good time with Jan today, Take care, Love, Sarah
  9. Yes Joan, my second one is being watched every year and thankfully has not changed in the 9 1/2 years. The one that ruptured is also being watched and that has changed slightly in size and although there was talk 2 years ago of having more treatment, I got a letter after my scan in April 2017 saying all was stable. So I haven't had any further treatment as yet, but I am anxiously awaiting my results from this April's MRi. Sarah
  10. Welcome back Joan, lovely to see you again albeit the reason for you being here is not the best. I'm surprised it took so long to make you aware of that 2nd aneurysm. I think we spoke on the phone back in 2010 after the first one was discovered. .Hopefully you will feel more reassured when you hear the outcome of their meeting next week. I'm sure if they can coil it, it will be a relief when it's all done so you don't have that uncertainty hanging over you any more. I still go for annual check ups - to check the one that ruptured and my other one too. In fact I'm awaiting the results of the latest scan at the moment which was done on 7th April. (I hate the waiting game!) Anyway it would nice to hear how things progress for you, Take care, Sarah
  11. Congratulations on arriving at your 1st anni-versary Kay. You have remained so positive throughout and have dealt with it all admirably - well done. Wishing you the best for the next 12 months and beyond, Sarah
  12. Hi Alex, a warm welcome to behind the gray. Sorry that you have had the misfortune to have experienced a sah, but appreciate you sharing your story which helps build a great forum for those in a similar situation. I'm not sure what the answer is to not being able to sleep but during a recent spell of this myself I was prescribed something to help me sleep which, although I only took it for a few nights, it did enable me to get some much needed sleep - and then got me back into the routine of normal(ish) sleep pattern. I agree with you, in fact I think the whole NHS system is faultless - I think me and my family have benefited from every department going, in fact I'm off there again next month for my 10th annual head MRI. I hope your recovery continues to go well, but do be prepared that it could take quite a while and next year plan something more romantic! Take care, Sarah
  13. I'm sorry to hear you are in this situation and how worrying it is for you and your daughter. Hopefully after your appointment, the options will become a little clearer for you to consider and make any decisions based on their judgement. I was wondering if this is an untreated aneurysm you have and whether your daughter has only known about it since this recent news and therefore is having to take a lot of information on board in a relatively short space of time - plus the uncertainty that goes with it. (my youngest son is 17 now) In 2015 I was in a similar situation in waiting for an appointment to discuss an aneurysm that had grown slightly and what, if any, treatment was needed. My approx 8mm aneurysm had ruptured in Nov 2008. I'm not sure to this day how me, or my family, got through that particular time. In brief, I'd had my MRI on 10th Aug, the same day as my sister had a scan which revealed bowel cancer. I got a phone call on Fri 9th October asking me to to go in and discuss my results on the Monday - that Friday my husband was having major heart surgery across the city and hadn't even been woken up after his operation when I had my appointment to discuss the aneurysm which was when I was told it had grown. Due to my circumstances they agreed for me to have a further scan in 6 months' time. After that scan I was given the options to either have an angiogram to see if it needed a stent and more coils put in, or be scanned again in a years' time to see if it had changed any further. Needless to say I chose the 2nd option. Following my scan in April of this year, I received a letter saying "stable appearances - scan in 12 months". So I'm a little confused to say the least. I'd suggest you go to your appointment armed with any questions you have and maybe take another adult with you and preferably even ask them to put whatever has been discussed in writing to you - and tell them about your daughter's concerns - not that I thought to do that with my own 3 children's concerns. Best wishes, Sarah.
  14. Hi, Sorry I missed your introductory post but thought I'd pop in here as I too have an untreated aneurysm which was discovered after another one had ruptured. I found the news of having another one quite devastating so soon after having had a bleed and all the trauma and anxiety that went with it. I was convinced having another one would automatically mean that it too would rupture and got all the 'what ifs' etc. I too was scheduled for a scan a year later and at that point I didn't know much about aneurysms, didn't know of anyone who had them and was not a member on BTG. During that year I was also sent into turmoil when I was told I needed more coiling for the one that had ruptured. I have had scans almost every year since to check both aneurysms. The unruptured one, which is a similar size to yours, has not changed or been treated since it was discovered and that was nine years ago .Obviously everyone's circumstances are different, but what I'm trying to say is don't let it rule your life - if they thought it posed a danger they would have arranged for your next scan sooner. The general rule is that the smaller the aneurysm, the less chance it has of rupturing. I think the more time that goes by the easier it becomes to live with an untreated aneurysm - it certainly doesn't bother me as much as it did when I first found out I had one. I hope this has given you a little reassurance not to panic and carry on with a little less worry and concentrate on your recovery, Best wishes, Sarah
  15. Hi David and welcome to BTG. Sorry to hear you've suffered a double sah but glad you have found this site so early into your recovery. I'm sure you'll find lots of useful information on here as you read the various posts and will be able to relate to things that others have experienced during their own recoveries. I had my one and only sah on 8th November, 9 years ago - I too was delayed in getting treatment -, from ringing for an ambulance myself on 8th, I eventually had my coiling on the 18th with several missed opportunities on the way. Recovery is a very individual thing but taking one step forward and two back is quite a common occurrence during those first few weeks, months and beyond. The rest between activities that Daffodil mentions is so important - so many of us are caught out by thinking we've had a good day, felt normal, achieved a lot, then wham we feel like we've been knocked for six and within a day or two we feel so wiped out, we can hardly do anything at all. None of this is easy especially if you have others to care for, but it's well worth it in the long run. Wishing you all the best, Sarah
  16. Nice to see you call in Colleen - congratulations on reaching this landmark with all the hard and busy work that comes with it. As you know I will be reaching the 9 year mark too - exactly 1 week after you. Despite the vast difference in miles between us, I'm sure we will have travelled a similar path to get where we are now - busy and I too shall be spending part of my annie-versary in a meeting lol. Perhaps we need more rest in our lives Colleen ...........or is that just wishful thinking Take care, Sarah
  17. Hi Zach, I am a bit surprised you are not being taken seriously when explaining your symptoms and experiences to the doctors. Whilst we are not medically trained on this forum, have any of these doctors actually carried out standard neurological tests ie checking your pupils and reflexes for example? Not all general practitioners or paramedics are clued up on bleeds to the brain and don't always connect the two with the symptoms they present. After all, similar symptoms can be caused by a whole lot of other conditions and I have read many a case where a sah had taken place yet was not initially diagnosed. In fact I was probably one such case. I too felt at the time that I was not being taken seriously and it was only through perseverance after several missed opportunities that I got to have a CT scan. ( I will mention that this was 6 days after the bleed, not years later although who knows, it could have been if it wasn't for me and my family being persistent) I will briefly explain what happened in my case although as you will appreciate, everyone's experience of a bleed on the brain is different. There can be similarities, but it all depends on the area of the bleed and the severity of it. Therefore symptoms at the outset, recovery and resultant problems can vary quite significantly amongst individuals. My subarachnoid haemorrhage was almost 9 years ago. I did not have the thunderclap headache which many sufferers describe, I did however start with a headache at the back of my head. Approximately 10/15 minutes later I experienced the sensation of liquid running under my skull. I don't recall any pops as such, but I do remember that my peripheral vision started closing in - the best way I can describe it is that it was like wearing blinkers like on a horses bridle and they were being pushed together at the front until my vision became such that I could only see a narrow vertical slit of daylight between complete darkness on either side. It was at this point I thought I was going to pass out and die. Thankfully, within a few minutes, my vision corrected itself and being in the UK I rang 999. The paramedic who arrived did not obviously suspect a sah as he left after various checks, leaving me at home. During the next few days I had the most horrendous headache, could not put my chin down to my chest, felt nauseous at times, and just slept for most of the time. I did however ring the NHS helpline, visited a doctor twice and an optician and still no one thought or suggested I needed further investigation. I knew my head was not right, but why wouldn't anybody listen, or understand my concerns and try to find out what was wrong with me - it was like banging my head against a brick wall - in more ways than one! On the 6th day after it happened my dad rang my gp surgery and demanded I get further investigation asap. That got a reaction! I had an appt made at a neuro clinic in a nearby hospital that afternoon. At 9pm, after five hours of waiting, I eventually saw two doctors who said 'before we send you home, we'd just like you so see a consultant". The consultant decided to send me for a CT scan and that hospital is where I stayed for the next 11 days. Since having my aneurysm coiled I have at times experienced numbness in my arms, double vision once, multiple episodes of aura of migraine without the headache, fatigue, brain fog, memory issues etc. I do not have headaches or nausea though. It maybe the stress and worry of it are causing some of your symptoms, but if I were you I would keep on trying to get referred - although I would check if and when you get to the stage of a referral to ask whether a CT or MRI would be more appropriate. It may be worth getting your blood pressure checked regularly if you don't already do that. Wishing you all the best, Sarah
  18. So glad you got the reassurance so soon Sonia - it makes all the difference. Take care, Sarah
  19. Hi Sonia - I think I would be confused too in that situation. I imagine if you just file it, it will keep cropping up in your mind which is why I would be inclined to get to the bottom of it - either via your GP or direct to writer of the letter, especially as the letter states you remain under surveillance, but you're clearly not. I coincidentally found out that I had a 2nd aneurysm by chance while I was at a doctor's appointment - he was reading a letter from the hospital on his computer and when he'd answered my questions, I asked if there was anything else in the letter that I should know about. Not for a minute did I expect him to say I'd got another aneurysm. I've been under surveillance since my bleed in 2008 although having said that, I would be monitored with or without that second one as the one that ruptured has a wide neck and it is in a relatively rare and challenging spot. I hope you go for clarity so you can continue your daily life without it lingering over you, Take care, Sarah
  20. Hi Maeve, I'm really sorry to hear that you lost your Mum when she was so young and you naturally have these unanswered questions going round your head. It's perhaps equally impossible for us survivors of subarachnoid haemorrhages to know the answers to your questions, but my personal opinion is that your Mum probably didn't suffer and would have passed away peacefully - I base this on the fact that as she was in bed, she was probably asleep up to the bleed starting and as it was a severe bleed, I imagine she would have lost consciousness quite quickly and therefore felt no pain. Whilst a lot of people experience a thunderclap headache immediately, I didn't when I had mine. My peripheral vision closed in to the point that I thought I was going to pass out and die and remember thinking afterwards how quick and painless that would have been. Please don't feel guilty for not being there - my daughter was there when I nearly passed out and had mine been as severe a bleed as your Mums, she would not have been able to do anything to help. I'm not sure if your Mum's bleed was from a ruptured aneurysm or whether you even know, but the chances are that if she did have an aneurysm that she was unaware of, then it's quite likely that she was born with the weakness on the blood vessel which over the years turned into an aneurysm by the general pressure of blood. I was 46 when mine ruptured and bled - I had no warning at all although I was under a lot of stress at the time and have always believed that the stress caused my blood pressure to rise, causing it to rupture. On the other hand, due to fact that my aneurysm was there anyway, it was quite likely that it could have ruptured at any point in time, with or without stress at the time. Every subarachnoid haemorrhage is unique and sadly many are not as fortunate as us to survive the initial bleed. I do hope that my post has helped a little bit and not led to more questions or distress for you -that would not be my intention. I really understand how upsetting it is to lose someone close, having myself lost 4 family members since my sah, Wishing you and your sister a happy future, Sarah
  21. All the best for tomorrow Kay -try and concentrate on the 15th September when it will be all over. Not knowing until the day which method they are going to perform is not easy, but either way it is being done for a good reason and then you will not have the anxiety that you have right now - you will be able to continue with your recovery and get your life back on track without it hanging over you. The relief afterwards will be a great feeling so keep telling yourself this for the rest of today x Hugs, Sarah
  22. A lovely written post Irene and I'm pleased you are feeling more positive about the future than you were 2 years ago. You have done very well with your progress and you should be proud of yourself. Behind the Gray is certainly a great aid to recovery to those us who have had the misfortune of a brain haemorrhage. Wishing you well for the next two years and beyond, Sarah
  23. Hi Kristi and a warm welcome to BTG. You have come to the right place to find support, knowledge and friendship. There are quite a few members on here who experienced a sah with no known cause. Having a bleed on the brain is certainly an experience none of us would have wished for and whilst everyone's outcome varies, there are a lot of similarities with what we experience after the event. You will gain insight from reading other's posts as you read the various threads on here. My sah was caused by a ruptured aneurysm, but like you, I wasn't admitted to hospital for several days despite calling the emergency services at the outset. The paramedic obviously didn't pick up on the severity of what had happened and although he said he could take me to hospital, he said I'd probably got better things to do on a Saturday afternoon and left me at home!! I hope your recovery goes smoothly, but do be prepared that sometimes it feels like one step forward and two back. Wishing you well, Sarah
  24. Welcome aboard Amanda, Sorry to hear about your unfortunate experience, little wonder you have severe anxiety and ptsd. Having said that, with the right support and time hopefully things will improve for you. It sounds like you have done remarkably well in the short time since the event and I hope progress continues for you. Being a mother of four will be hard work, especially whilst recovering from a sah - I found it all exhausting during recovery and I only had 3!! Hopefully you'll find lots of advice and tips on this site which will help you feel more reassured with feelings, etc that you encounter along the recovery path. Wishing you the very best, Sarah
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