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  3. Hi dbc Non-aneurysmal perimesencephalic haemorrhages (PMSAH) are generally regarded as having a benign clinical course - it is very rare that there will be any complications leading to death or severe disability for this type of haemorrhage. Rebleeds are also extremely rare - we have a member Jimble on this site who has had 2 perimesencephalic bleeds, but apart from him I have only read about one other case of a perimesencephalic rebleed and that was cited in the medical journal as a unique case. I am not sure what your neurosurgeon said is strictly true ( I think some doctors sometimes try to simplify information in order not to complicate understanding) - a very small percentage of haemorrhages with a perimesencephalic pattern will be caused by an aneurysm in the posterior circulation. The perimesencephalic pattern gives doctors a good indication that the bleed is most likely to be non-aneurysmal, but they do have to do further investigations to confirm this. Your angiogram would have confirmed this. I am guessing that the neurosurgeon was pretty happy with the outcome of your first angiogram to feel that another was not warranted. You have to remember that an angiogram is an invasive procedure carrying a risk (albeit very small) of stroke - a neurosurgeon would not want to carry out another unless absolutely necessary and might consider follow up with an MRA sufficient. I have even read of cases of PMSAH not getting even one angiogram, just a CTA. I had a PMSAH and had 2 angiograms - this was only because of a vasospasm of my basilar trunk artery on the first one - they needed to do another 3 weeks later when the vasospasm had resolved to ensure no aneurysms were hidden by the spasm. I would have been completely discharged after that with no follow up had it not been for a small unruptured aneurysm I have monitored. If you are still worried I would get back in touch with your treating hospital to talk through any concerns. Unfortunately because of its benign clinical course, and the fact that PMSAHers are often not followed up, I think that this has led to some medics underestimating the possible long term impact of a PMSAH. Whilst it is true that some do make a remarkable recovery there are plenty of posts on BTG to show that this is often not the case. I had a PMSAH just over 2 years ago and my most frequent and enduring symptom is the fuzzy head. I also sometimes still suffer fatigue, headaches, insomnia, mild tinnitus and am also quite sensitive to light and noise. For me, working only 18 hours a week (I'm a data analyst) makes life just manageable. It is hard - I know if I did not work I would feel much better physically. If I was younger I think I would have had to quit my job and try to find something easier on the brain - as I am only a few years from early retirement I decided to stick with it but every now and again I question that. Roll on retirement! Take care everyone. X
  4. Hemorrhagic Stroke

    Good luck you and Mum Linda. My Family kept talking to me and got photos and my Sisters sang to me Even though I do not remember all, when I was better and had appointment I remember places that were all windows so some memories stuck in my head. My hubby said "We went here Win" and that was when I couldn't even hold myself upright !! xxx Remember some memories are better than none xxxx
  5. 9 months out - need a check -in

    Thanks all - just what I needed to hear. SAH is an event; recovery is a process! so glad you are all here. Vermont Girl
  6. Hemorrhagic Stroke

    Hi, if mum is still in hospital she will be or should be fully assessed on how she manages in walking and how she will cope once at home. There should be a team gathering around her soon if not already. Keep clam and ask as many questions you need to ensure mum is suitable for home or any other place and to ensure that mum will be looked after. Good luck to you both
  7. Hemorrhagic Stroke

    I m sorry to hear that. Is she at home or in s rehab? Did they referred you to neuro and physical therapy after discharge. I will definitely be very careful about falls since most 80 yr olds might have osteoporosis. Sometimes we do refer patients to neuro ophthalmologist for better answers. Drink lots of water except make sure she doesn’t have fluid restrictions due to congestive heart failure. I ll make sure she sees the primary care and neuro and ask them questions. Good luck. You ll find that this site is very helpful.
  8. Hemorrhagic Stroke

    Welcome to BTG. Sadly many of us were in the situation where the medics were giving very little help. It seems to be commonplace. Is your mum still in hospital or has she been discharged? She is in the very early days of recovery, there is no timescale as everybody's recovery is individual. Some people are still recovering years afterwards. Unfortunately recovery from a SAH is a very long slow process. and only time will tell what deficits will remain. Make sure she drinks plenty of water as that will help any residual headaches. As for caring for her, all you can do is to take your lead from your mum. Do you have any follow up appointments if she has been discharged as an inpatient?
  9. My mom had a hemorrhagic stroke back of brain due to blood thinner meds. Anyone else have a love one facing this? She is 82 now double vision, nausea when stand. Very troubled don't know what to do for her. She's alert no other side effects. 3 weeks now not much progress. Doctors don't seem to be of much help besides more medicine and leave me not knowing how to take care of her right.
  10. Dbc- I had the perimesencephalic type as well. They did 3 angiograms on me to be certain there were no aneurysms or malformations. The third one being a month and a half after the fact when I was already home. They said I would have a scan in a year but I ended up having 2 CT scans about 5 months after my bleed for a constant pain that would not go away in the back of my head. Both scans then 1 week apart, 1 with contrast and 1 without, were clear. I had a follow up with my neurologist about a month after that and now I literally don't think I go see him again for another scan until the end of this year. I am 9 months out and have an array of things going on at any given time. Headaches, dizziness, confusion, etc. Basically what everyone else complains about on here. You're still feeling bad because the brain and scar tissue from your bleed take time to heal as everyone here can attest to. It's a very slow process for sure. I am definitely not who I was before my bleed but everyday in every way I'm getting better and better. At least that's what I keep telling myself. Slow and steady wins the race and take one day at a time. I do so much to try and make my mind right and deal with the anxiety of it all, mindfulness, meditation, acupuncture, montras, you tube videos...... lol... I'll try anything! I wish you well. We are all in this boat together and people have great advise on here so keep posting when you have questions or concerns. Everyone on here will put your mind at ease. I will say this, for me personally, I would need a follow up if I wasn't given one. So if you are unhappy with answers you are getting then find someone else that will give you answers that you are more comfortable with. Good luck to you!
  11. Macca is the best I swear! You always know how to make everyone feel at ease and you have the best advise. We appreciate you Macca, and everyone on this site. Everyone is so helpful and supportive. Vermont girl- I am 9 months out as well with no residual effects thankfully, however, sickness is definitely way harder to overcome so I can absolutely relate. I'm a realtor and get exhausted quickly with all the running around for sure. I used to substitute teach and do an after school program as well but gave it up as I just don't feel like I can handle. Family is so important. Having a trauma like this is very trying on your personal relationships. I still don't feel like myself and I don't want to do half the things I did before and I feel bad about it..... but I know my partner and family love me however I am. They're just happy and grateful I'm here and so am I everyday. Good luck to you!
  12. Last week
  13. Hi Penny glad you found this helpful. Like you I came looking for some help some months after having my shunt placed when I felt dreadful and a little lost as to what happens next. I found my google search led me to BTG and it’s a place where I found honesty, practical advice, shared experience and compassion in our bewilderment. I’ll try and answer some questions but as a snapshot here are some of my timeline highlights. I had had my drivers license revoked for over 13 months. It was a long time without mine and apply as soon as you can as the DVLA is not quick but I wouldn’t and couldnt have driven sooner, even after I got my license I could only do short journeys , struggled with night time journeys but now nearly six years post SAH I can manage longer drives and short night time ones. When you are without you can gets free bus pass if you don’t already qualify. i was off work for 16 months and then when I went back I did 5 hrs a week. Yep 5! I built up slowly with help of employer and after two years I got back to 16 hours a week and still do this now and that’s my absolute limit to balance with all the other life events like bringing up kids . Maybe in future I may find more reserve but it’s not there’s at the moment. dizziness and imbalance lasted a long time. Like you I enjoyed walking my dog but also swimming, I couldn’t get back to swimming as the way I held my neck swimming tires me greatly post shunt but I now walk every day and have a good level of fitness. You have to build up very slowly and give it time. i had to have help to travel somewhere by train at first when I started to gain more confidence and book assistance but now I can manage it independently but carry my stick and wear my ‘please offer me a seat’ badge . Last year though we almost missed a flight as I didn’t book assistance and I couldn’t get through the airport quickly, so learnt my lesson there. You asked what can you do? Well I learned fast to ask for help and not to worry what people thought , tbh hadn’t paid much attention to that pre SAH and I figure most people like to help and if they don’t well then let that ship pass. It took a long time to get a new sense of balance and feel anywhere like my old self. I can’t tell you that I do now, but I feel like myself if that makes sense. I know this version of me a bit better now and I think that’s what is so hard in the months afterwards. Our lifetime of knowing our brains and bodies is emptied out and we kind of have to start building that new knowledge and find new limits and new ways. Be curious Penny about what Is possible but be kind with it. When I couldnt walk the dog I sat in a chair in my garden with a ball thrower. Not the same but we found a new way for that moment. And now I can walk two miles or more...but always with my stick . And that’s my new normal. And but I’ll take it over where I was in the months straight after so I see it as progress and also how fortunate I am to get as far as I do with just my stick . Just try be kind and give yourself the consideration you would offer a friend in the same circumstances. So Does it get better? Well I hope with time it will improve for you as it has for me.
  14. You're welcome. We all need to step back and take stock from time to time. Sometimes you get so close to a situation that you fail to see what should be obvious. I've done it enough times myself and you get wrapped up in things that seem all consuming. Good luck with re-planning and enjoy that family of yours. Let them see some of the benefit/reward of all that work you have been doing -and you know what? - Your work will still be there when you get back and someone else may just have taken some of it on for you! Best wishes Vermont Girl! Macca
  15. I agree wholeheartedly with Macca. If you can lower your self expectations you will find things easier. Take the pressure off yourself, step back and look at what can be done to ease your working situation. I didn't ever believe I would reduce my working hours but post Nasah I don't believe now that I could go back to the punishing hours I used to love. It's a life changing event and journey. Slow up and take stock of they things you enjoy, then make more time for them. Clare xx
  16. Daffodil picked this up online from 2013. How are you now? Apart from being fantastic in your support for us all. Have you got any normality back. ? I had a SAH in July 2017 and shunt fitted in October. Still wobbly and headaches!! Does it get better? What can I do to help myself. So fed up with walking with a stick. Sorry but that’s how it is. No more 2mile walks with my springer. Does anyone know haw Long it takes to get a driving licence back. I feel marooned.
  17. 9 months out - need a check -in

    Macca, you are a wise soul. Thank you so much. Everything you wrote hits the mark. Im seeing the “gift” of this current sinus infection and days at home it’s forced me to slow down, stop - and reappraise the way I’m doing my life. I need to find a way to do that regularly, without having to be sick to make it happen. It’s all about balance, I think. And I’ve got a lot to work on there, I guess. I do very little of taking care of things at home - my husband who is mostly retired, takes care of everything. Paradoxically, it might be better, for my own work/life balance, if I did a bit more. Kind of more me into my “real” life. Moments when I feel quite content, are when I’ve made the rare meal and enjoyed it together. It certainly is a journey, thank you so much, Macca.
  18. yep been there and we all so know and understand.
  19. Hi, Yes I have some thoughts having experienced this kind of thing before I retired. First, fatigue/tiredness is probably down to the SAH, but regardless, you are feeling it whether or not it is from that so you need to deal with it as best you can. Second, you are so busy doing your job you have little time for anything else - and that can't do anything but wear you down, eroding your general health, your time with your family and your work is taking over control of your life. It's time to arrest that and take back control. Your last sentence says it all, but you need to stop thinking about it and just do it. Take a couple of days off, get yourself a pen and paper, find somewhere quiet and go through what you do each day, both at work and when you get home. You need to break it down and look at what you can delegate, set specific time for your admin, take regular breaks, even if only for ten minutes or so. Even at home, can someone else do the washing up or hovering, making the beds etc. Can you take the dog for a walk just to clear your head? Learn to say 'No.' It sounds to me like you are very conscientious and take on everything that comes your way. Can you get someone else to do the task and you just oversee it instead of you doing it all? Make time for your husband and family - do some quality things together or you will be in a rut and they will begin to resent being always in second place. After all, don't you go to work to make things better for yourself and for them? Yes, you have ambition and your career is important to you but you need to re-evaluate why it is important. You should look at it this way I think - family first, career second. The first is your bedrock, the second is your means of ensuring its well being (including yourself). You will be no good to anyone if you gradually get weaker and weaker to the point where others will start asking questions about your competence and your ability. So, well done for recognising that something needs to be done. Nothing stays the same forever. What you must do is recognise and make the changes required and don't stand still, because when you do that, you get left behind. We all do things best from a position of strength, not weakness. When you enjoy your family, you enjoy your job and you do it better. You're a smart lady. I know you will heed this. Do it for your family, do it for your career but most of all, do it for yourself. Good luck, Macca
  20. You're welcome Issy! It's what we do! Good luck, Macca
  21. Hi all im 9 months out from NASAH. Very lucky - no residual effects. - discharged from neurology Took 4months off from my academic dean position in research university. Like the job very much and am perceived as very competent I’m exhausted. Have gotten two sinus/respiratory infections that really knock me out - takes multiple doctor visits and meds to resolve, but sometimes takes a month. Have gained 15 pounds in 5 months. Very tired in the evenings, many deadlines for new programs and faculty development. Little time for my husband and grown family. Not at all sure this is NASAH related, except that the close call has me reexamining everything. I am being reviewed now for a 5 year reappointment - it will get approved. I keep thnking that that if I adjusted the way I worked, focus more on delegation - and lower my admin xpectations of myself, things would go better. Very ambivalent, very tired, but like my job, on most days. Any thoughts?
  22. Thank you all for your words of wisdom, guidance, humour and support. Your words helped more than you realise. Much love to you all. issy xx
  23. Very true Karen. We are all individuals and the damage our brains have suffered is individual too. However i would like to thank you for providing this site where we can compare and support collectively. Thank-you Clare xx
  24. Hi Penny, I am 3 years down the line and also have a shunt. I still have a range of balance issues but part of mine are to do with the fact that the bleed caused damage to my spinal column, so I have a spine injury as well. In the first year after my bleed I had a couple of falls - one outside and one in the shower. Like Daffodil and others have said they had to make me reconsider how I go about doing things. I know from your other posts that you are having trouble with the setting on your shunt and I would not be surprised if that is contributing to your balance problems. Hopefully the doctors will be able to sort that out for you soon. I find that since my bleed whilst my balance issues have not actually improved, like others on here I have learnt to deal with them and adjust (and as I said earlier a large part of mine is the spine damage). I can get spells of dizziness and have issues with steadying myself and walking etc. I have walked with a stick since just after the bleed and now also use a wheelchair for any distance. I hope things do improve for you and they get your shunt setting sorted out. Gemma
  25. Shunts

    Hi Penny, I had my shunt fitted 3 years ago and it was very sore and tender for a year (like Daffodil I couldn't lie on it). Now it is better but it is still a bit tender - if I lie on it or catch it funny it can hurt. Luckily they must have got my setting right at the start as I have not needed a readjustment to the setting (and I know from my brain MRIs that my ventricles are a normal looking size). I hope they get the setting right for you soon. Gemma
  26. I've always believed that any interruption to the supply of blood to the brain, is a stroke. That includes a clot or a bleed on the brain. Our deficits as to what we experience, will always be different ... as to what artery or what has been damaged by the bleed or even a clot. Every part of the brain is different, as to the area that it supplies and the affect that it has with our day to day life. No size fits all and I doubt that you guys would be on this site, if you weren't experiencing problems. Brain injury will always be individual and some of us suffer less and some suffer more mental and physical deficits ..... i'm still on a learning curve since starting the site in 2006, but I do know that talking about it and sharing your own experiences is something that you can't put a value on. xx
  27. Hiya, I had my bleed 3 years ago and showed signs of cognitive issues from the outset (so much so that I was tested before leaving the hospital and then discharged into rehab). I found I would often lose words or use the incorrect word for something (it was often a related word, for example I would say shoe when I meant sock and in rehab they told me this was because of the way our brains store words - we store similar words in the same place). I would also stutter or slur words and this would get worse when I was fatigued. Over the past 3 years this has improved, although I do still get it. Stress and fatigue make it worse. I tend to find I have to slow down and speak more slowly to ensure I get the words out. If you are concerned then it might be worth getting back in touch with your doctor to discuss a follow up or see if you could have some tests done? Gemma
  28. Fourteen Years Later

    Amazing achievement, a true inspiration! Many more years of travel & positive thinking ahead me thinks! 😉
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