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  1. Today
  2. Del started following Has somebody had an infection while in the ICU.
  3. Gillian99
    Really interesting and reassuring to read these posts! I'm over 5 years post NASAH and 2019 had been my best year by far. However, the last 4 weeks haven't been good, think my head has been irritated by a virus of some kind and I'm back to these weird sensations at night. For me I feel as though I'm pulled out of my sleep and my head does the weird wave washing through it sensation, which is very unnerving. I had such a good spell of feeling like my old self and feeling fairly devastated that I'm back to having an irritated brain again! šŸ˜³
  4. Robrigg123 Robrigg123 changed their profile photo
  5. Yesterday
  6. Macca
    Hi Del, Welcome to BTG. The one thing about this site is that we are all survivors. We've all been in that seemingly hopeless place, but have come through it. The statistics do indeed paint a rather gloomy picture, but there is hope. When I was first admitted, my family were told to hope for the best but expect the worst. I was in a coma. I had to have a lumbar puncture and they were going to give up on me but decided to get in a top, top, consultant to give it one last go. On the third attempt it worked. Without that, I probably wouldn't be here today. My aneurysm was an irregular shape and they were going to coil it but thought they couldn't do it. In the end, the lumbar puncture was done and I was coiled. If it hadn't been for that consultant, they were going to do an operation going in through my skull, and I don't think that would've been pleasant or as successful. I am now nearly ten years further on and in good health, generally speaking. Sadly there are no guarantees, but that doesn't mean there isn't any hope. You can only be there for her, and hope she has the resilience to pull through, and provide the support she needs now and will do in the future. I think it will be true of everyone who reads this, that we are with you and hope for the best outcome possible, and that everything that can be done is being done. I wish you and your Mum well, and please come back on and post again if we can be a release for your pent up emotion and a support mechanism by lending you our experiences of what it is like to go through a Subarachnoid haemorrhage. Best wishes, Macca
  7. Del
    My mum had an SAH, it's been 5 weeks tomorrow & she is still in the ICU. In 2 days she was able to talk & 3 days she can eat already but lately she has ups & downs. She was supposed to have a surgery to put a valve in so the liquid in her head can drain, but the other day she had an infection in the part where the tube to drain the liquid in her head was & yesterday with blood. She had a CT scan & after I gave her dinner which seems like she's ok though she just ate little. The doctor told me I have to prepare (which means the worst) They moved her, which is not sharing anymore, its more isolated. Is this really seriously like a life-threatening again? She needs to take antibiotics that will last 2-3 weeks. Is there anyone who had experienced this? Any thoughts. Thank you.šŸ™šŸ™šŸ™šŸ™ŒšŸ™ŒšŸ™Œ
  8. Del Del joined the community
  9. Last week
  10. Winb143
    Hi Ami, Like Daffs I also had Hydrocephalus, but I was in cuckooland as it was keeping me there. I remember nothing apart from cooking a curry then shouting "help me" as I passed out. I remember nothing until shunt was put in and I slept most of the time. Went from Kings College to local hospital, were my Family were told I'd never be the same and to put me in a home. Cheek !! Hubby took me home and a year on from bleed I had a shunt put in and it took me a while to sit up alone or even hold myself up. All this I am told by my wonderful hubby and daughter. Hubby was going to say no to op but it got me better and now we argue and moan like we did before the bleed. So I know I am better ha !! Keep a watch on it and forgetfulness ie short term memory loss is part of the beast. But if worried please see a Doc as nothing like peace of mind ... Good luck My Bleed was 2009 and shunt was fitted in 2010 Still trying to walk more. !!! Be Well Ami xxxxx
  11. Daffodil
    Ami, I will tread carefully here because I donā€™t want to get in the realm of offering medical advice but I had quite a few leaks of CSF from my burrhole when I had a EVD placed post bleed, I had the tube in for over 3weeks so it happened a fair few times..... I pulled a few tubes out apparently....and also afterwards when it was healing , which possible caused the metallic taste and can only say that if this was a CSF leak you would probably know about it instantly. A sudden drop in CSF pressure( loss of fluid) is almost always accompanied by awful sickness, vision issues, balance, aversion to light, and having to be motionless and lying down or at least that is my experience anyway. I experienced this after lumber punctures which I had numerous times before Shunt placing to Try and kick start my ventricles ...it didnā€™t work. Anyway the more fluid you lose the worse the effects are. If you are worried do push to get checked out, any loss of CSF would require absolute rest but importantly not normal to leak for no reason. I hope that your symptoms are maybe just the impact of the bleed itself and that you doing a bit more.
  12. Winb143
    Still I stink, was told it was due to my SAH/Bleed , Comfort stinks clean bedding smells my hair stinks and water is foul. Love a coffee from a shop and can eat out okay love food, I feel like I have had a shower in dirty stale water, Now use babies shampoo and very mild kids detergents. Still get laughed at by hubby who says I have an ism as in phantosmia. I go "can you smell that Al," he goes "smell what your ism?" He is a kind soul but if you hear of woman hitting hubby over head with her shoe..It is me ha ha ..It is a problem though arghhhh!! Can always eat well though !! Just smells have changed perfume stinks etc etc been demoted to cheap perfume or body sprays light ones xxxx
  13. Gill C Gill C changed their profile photo
  14. Chelle C
    Sarah, So pleased you have been given better news than you were expecting, I think I would have taken that very same option, Asking the question about it being on previous scans is a good idea, as you say if it has shown up on those and it hasn't given you any symptoms then as you say it's less likely to bother you in future. Hopefully you can relax a little now and get back to living your life with a little less stress. Love & hugs Michelle xx
  15. AMI
    Thank you Daffodil for the very prompt response. I did have hydrocephalus at the time of SAH, which was mild though and need any kind of drainage. In fact it was decreasing at the time of second scan about 4 days later. Now the fluid leaking is small in 'quantity, not sufficient for sampling, its most often droplets. I did not taste it, it doesn't go backwards inside my mouth. It drips from the nose on one side slowly especially when I bend forwards or strain. It is very clear, watery, not any thing like nasal mucus. I did put the drops on paper napkins thrice, it doesn't stiffen like normal nasal secretions. It looks as though the neurologist isn't convinced about the fluid being CSF in the first place. He said CSF leak is usually copious in 'quantity. Even the neurosurgeon said there was no urgency for the scan, the risk of meningitis is minimal as it is a high pressure leak. So I am actually worried that I am thinking too much and imagining my symptoms (like head ache, low stamina etc). I have done so well so far and this is all very demoralising. Anyway thank you very much for the response, good to speak to someone who had similar symptoms. How much was the 'quantity of leak in your case?
  16. Daffodil
    Hey Ami, did you get any taste /smell with it? did they go ahead and test to check it was CSF? If you presented with hydrocephalus as a complication at the time of the bleed then even if the high pressure corrected the ventricles can be left damaged. That was my experience and I had to go in four months after my bleed and have a VP Shunt permanently placed. I was very poorly but hard to say if that was the bleed itself as I had been hospitalised a long while, had a high grade SAH and EVD but after coming home it was like my senses shutting off one by one. It was thought I may have had leaks during this time because of building high pressure which I tasted in my mouth. My GP referred me back in and I was blue lighted back to my treating hospital as it was considered an emergency situation. High pressure build up does need to be investigated. Now that I live with hydrocephalus If they suspect there is a chance of any pressure changes it has to be taken seriously and you should push to get scanned in my opinion. if there is any concern that my Shunt isnā€™t working then I am shuffled off for a scan to check ventricle size as this is the only definitive answer on this . And it is always a MRI not CT scan. I would get checked out to hopefully rule out hydrocephalus. The impact of any bleed across the brain surface itself is fatigue, reduced cognitive and physical stamina , short term memory deficits plus many others depending on the severity of the bleed and the location. Good luck
  17. AMI started following CSF leak after PMSAH
  18. AMI
    Hi all I am exactly one year post PMSAH. My recovery has been decent till October, I am almost back to full time work with some minor adjustments. In November 2019, 10 months after SAH, I started having clear watery discharge from nose, thrice in 24 hours initially, then randomly about another 5 - 6 times. Suspecting a CSF leak, I met the neurosurgeon. He said there is a possibility of high pressure leak secondary to hydrocephalus, so asked for an MRV, possible LP Shunt if hydrocephalus is there. Another neurologist that I know said spontaneous leaks heal on their own, so no need for a scan, just not to exert myself too much, wait and watch. Two very different opinions. My 'question is- did anybody else suffer from a CSF leak after SAH? What are your experiences? I feel generally unwell these days and my recovery seems to have slowed down in the last 2 months. My headaches are worse in duration, though not in severity. I am not sure if it is just my stress and anxiety. My fatigue is better in that I do not have those episodes where I cannot walk a few steps also, but again in general my stamina is low compared to earlier. I know you cannot give me medical advice, I just want to know the experience of others here, which always has proven useful in the last one year. Thank you in advance.
  19. Skippy
    Hi Tim Post your story in the "Introduce yourself" forum and you'll find you get a lot more responses. If you give us your story, details, circumstances etc, we can reply to your situation directly and it helps you to find help and support directed at you. Welcome to the family and feel free to ask anything you need - although we cannot give you medical advice as none of us are medically trained.
  20. Skippy
    Hi Sarah Sounds like a good option to take to me. I asked my consultant what the odds of my brain bleeding again were - he said 1% - 2% the same as anyone on the street. I asked him what the odds of my brain bleeding again were if I carried on smoking and he said 3% - I'm still here (the lower odds in my favour) and I haven't cut down smoking let alone stopped - and I'm still here (higher odds in my favour). Definitely get any confusion with scans cleared up and then enjoy life knowing that the odds are no different to someone who has never had a bleed.
  21. kempse
    Many thanks Karen, Fiona Macca and SM Yes, I can live with those odds, it could have been a lot worse. I was definitely feeling more relaxed about it all after the appointment than I was before it. I don't think I'll have a problem with getting on with my life, after all I've managed to live with these two aneurysms for the past 11 years. The nurse said on Monday that although the fistula was discovered incidentally from the angiogram done last October, they had looked back at the MRI scan I had last April to see if it was showing on that scan and it was, it's just that they weren't looking for it. What I should have asked and may still do so, is whether they had looked at any scans further back to check if it was showing on those. I just thought if it was there a few years back, then I would be even more reassured that it was going to remain as it is and probably not cause me any problems in the future. I was assuming that both the annies and the fistula could be checked on the same MRA, but it's whether they want to leave the checking of the aneurysms that extra year. The neuroradiologist had told me I would be called for an MRI in Oct 2020. Anyway the nurse said she would write to me this week, so I will await her letter then make contact to clear one or two things up. The support I have received from you all on here has been a great help to me and I really appreciate it, Thank you. Sarah x
  22. Swishy
    Hi Budd, So glad you found this site...it is so helpful to actually communicate with people who know what we are talking about... I also get twinges of pain in my head (not terrible) pains I did not have before my SAH...I like you had no aneurysm, no cause found...also had a vasospasm which I thought was another SAH until I had a clearer head and could understand what had happened.... I am 2 years 8 months out.... I think I have less random head pains but I still have them...I am of course aware of them but they really have stopped causing me worry...Time is a huge factor here... My best wishes for your continued recovery.. Jean
  23. Super Mario
    Sarah, I entirely agree with what Karen and Macca have posted. Don't let that 1 to 2% worry you, many have problems that pose a much higher risk. Stay positive and live your life to the full. (Not work, work and more work)
  24. JenniH23
    Thanks Fiona. It looks like yours was a problem within the eye. All my tests have come back ok so looks like mine is a problem within the brain. Can only hope it may improve over time. Take care xxx
  25. Macca
    Sarah, 98%-99% against 1%-2% odds are pretty good aren't they? You've probably got better odds than the risk of getting run over when you cross the road! I think you should just be happy with that for now and get on with your life. Some people must be walking around with bigger risks than that and don't even know it. I was advised to avoid head contact sports and other than that I've been ok and I'm 9.5 years out now! Well done Sarah! I hope some of those answers and our support have helped put your mind at ease somewhat. Macca
  26. Doonhamer
    Hi Sarah, Gosh - incredible what you've been having to endure! Here's hoping that you have no more symptoms and closing down of that bit of case in Sept 2021! I'm guessing that's the lowest options for you. Hope you get the appointments rationalised. So much to deal with. Fiona xx
  27. Doonhamer
    The ophthalmic consultant did some tests on my eyes in April last year - ones where they add drops, but nothing I'd ever had before in the optician that also needed drops - sorry I can't remember the names. The pictures showed clearly that there were some blank spots on both eyes - but also in a way that suggested that it might not be permanent. The only way to check this is to see this again. By the end of June, I was able to pass driving, and that was key. So I don't know whether there is still any permanent blank spots given that they got past my driving. If I was unable to drive, they would need to keep checking this. The consultant was actually a bit cross with me for demanding my DVLA test as he thought I could still be blind despite my test (he'd been unable to schedule an appointment each month, so I forced it). For me, the double vision was worse. I'm less sure about what causes any blurring. I think that the left eye is still less 'clear' (colours etc) than the right eye, but not a problem. That's good that you will have some further tests, they might get to the bottom of that for you. Just annoying for you as everything will appear like a long wait. For your daughter - well, what's good is that you are still here for her. You feel terrible just now, but you *are* here and she has got you.
  28. JenniH23
    Hi Fiona Just wondering how did the consultant identify blind spots when you were unable to focus properly at the time? Have they been able to help your eye revert back to its normal position? My blind spots are very obvious to me. Itā€™s like wearing a pair of blinkers. I feel like Iā€™m living in a different world to everyone else. Finding it hard to engage in activities around me. Still got all sorts of flashing light & sparkles in my periforal vision. Iā€™m on strong dose of blood pressure tablets as Iā€™ve so much anxiety over it Iā€™m freaking out all the time. This was supposed to be my time now with my daughter whose nearly 7 and I feel Iā€™ve had it cruelly snatched away. Xx
  29. Karen
    Hi Sarah and what a nightmare for you! x I would take the exact same route if I had your circumstances. I guess that the medics have to weigh up the difficulties of treating it, the outcome for you.....up against leaving it alone, especially if you're not experiencing problems at the minute. At least you know that they will keep a good eye on it for any changes etc. I'm guessing that your annual aneurysm scan will just check the aneurysms themselves, but something that you need to ask as whether the two issues can be combined into one check up scan? MRA is used to evaluate blood vessels and help identify abnormalities and it sounds like the right option to me as they will know from your last scan precisely the area that they'll be looking at to check that there aren't any changes, rather than putting you through angiography. Good luck Sarah and I wish you well .... Big hugs! xx
  30. kempse
    Well, I had the appointment 2 days ago to discuss the dural AVfistula that they had incidentally found in my brain whilst checking my 2 aneurysms. All my planning in allowing enough time for picking my sister up, rush hour traffic, parking at the hospital etc., just didnā€™t include the fact that my car might not start! Being on my own with nobody else up, I soon abandoned the idea of trying to get it going with jump leads, deciding it might be quicker to go back in the house and hunt for my daughterā€™s car keys in her floordrobe and go in her car, just hoping she didnā€™t need it! The parking at the hospital was horrendous, no spaces anywhere near where we needed to be, so parked a 10-minute walk away only to be told we were in a staff car park, so had to move! Finally arrived at my destination 2 minutes before my 9am appointment time. Despite the appointment letter saying I was seeing my consultant, (who I have never met), I saw a nurse practitioner, who, within a few minutes of arriving, informed us that it was her first day back following maternity leave. She was very nice, if not a bit rusty after her time off! At one point she tried to take my blood pressure with a small bp machine, but the batteries were flat so had to go off and look for another one and then when I asked her to write down my bp reading and what I should be aiming for, her pen had no ink left in it. She didnā€™t know the answer to one of my questions, so she went to ask my consultant. When she returned with the answer, I asked her another question and again she had to go and ask him for the answer. At this point he actually joined us in order to answer my various questions. It was explained to me what a dAV fistula was, plus the 3 different ways of treating them, all of which I was familiar with because I had read so much on the internet. These 3 procedures being: endovascular, open surgery or stereotactic radiosurgery. I was then told that in my case, the fistula was very deep within my brain and both the endovascular and open surgery were not an option as it was deemed too dangerous due to the location. The only option therefore was the zapping by radiation, but this could take up to 3 years to work and only had a 60% chance of working anyway. I was offered the option of talking it through with the radiosurgery team or the other option offered, was to leave it alone for the time being and be scanned again in 12 monthsā€™ time to see if the fistula had changed/grown. The latter option of leaving it carried a 1 ā€“ 2% risk of the fistula bleeding. The reason he was happy to leave it for the time being was because I donā€™t have any symptoms. Before this appointment I had never even considered the fact that 2 out of the 3 ways of treating fistulas would not be available to me, but I did already know that the radiosurgery experts had said in their MDT, having reviewed my case, that this type of treatment had a smaller success rate, but were willing to give it a go if there wasnā€™t a more attractive option. After trying to process all this and not really knowing what to do for the best, I told him that I was swaying towards leaving it and be scanned again in 12 monthsā€™ time, adding that I find yearly scans come round far too quickly and that I was so fed up with having to have annual scans, then worrying whilst waiting months for the results. He then said he was happy to leave it for 2 years from the last angiogram. He also said that if the fistula hadnā€™t changed by the time of the scan in Sept 2021 and if it was still not giving me any symptoms, it was his opinion that it never would change and he wouldnā€™t need to scan me again, so I could be discharged. Whilst feeling a little more positive at this stage of the meeting I agreed to go down this route, so I hope Iā€™ve made the right decision and, in the meantime just hope I donā€™t get any symptoms and Iā€™m not in the 1-2% that have a haemorrhage. I shall have to contact him again, because Iā€™m not sure if he realised that I have annual scans anyway to check my aneurysms, so maybe I havenā€™t got a 2 year break after all ā€“ he had said the 2021 scan would be MRA not angiogram so I need to check this out. If anyone sees any new brains for sale on their travels, could you let me know please, or even a re-conditioned one would do! Thanks for reading, Sarah x
  31. Louise
    Hey Budd Warm welcome to the site glad that you found us. As time passes you'll find it gets easier...
  32. Doonhamer
    Thanks everyone - really amazed at all of this - something practicing that might make a difference. I've found a gap that I haven't needed before, and I had no idea how to go about this, but you've got ways in which to attempt this. I'm thinking of going to discuss with HR in the NHS (a different job, a third application without a response). I might ask them generally about whether they require this or not. In the meantime I will definitely do the audio book / summarising - this is a great start. Funny... the person trying to sell the job made me want the job more, which had a detrimental effect! If I hadn't cared about the job I wouldn't have been nervous. šŸ˜³
  33. Tina
    Hi Dave a very warm welcome to BTG So pleased to read you are doing so well after your non-aneurysmal subarachnoid haemorrhage. I can understand your frustration at not being able to drive, but its the law, frustrating as it may be. Here are links to some other posts that may help you. I do know from experience that the DVlA can be very slow, keep chasing them once you have sent all the relevant information to them. https://web.behindthegray.net/forum/23-driving-after-sah/ https://web.behindthegray.net/search/?q=driving Good luck and take care, let us know how you get on. Tina
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