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Showing content with the highest reputation since 19/07/19 in all areas

  1. 9 points
    I hope that this gives you a little comfort and today is my 14th year after the 2nd SAH ... It was as hot as it is, today... I'm still kicking! Lots of love to you all....xx
  2. 6 points
    Hello Katow My husband has NASAH on 20th May this year, he's a healthy, fit 57yo. I did a lot of research, and read medical journal articles in the weeks after his haemorrhage. It is confounding that something so life threatening can occur to a health focussed and fit person. The truth is, it can happen to anyone, of any age, and for reasons that cannot be explained (I witnessed people of all ages in the Neurology ICU with my husband, he was too sick to observe what happened for those people, I watched as people fought for their lives, and others lost their lives, all happening around him). Having something so life threatening occur is in itself enough to trigger anxiety and panic disorder in the best of us, if you had any pre-existing anxiety, it's not surprising that you could now find yourself struggling, especially so soon after the SAH. What I found is that the medical help kept my husband alive and aided his recovery, but once the medical crisis had passed their job was done, and no further support was forthcoming. I agree with others that counselling and mental health support are also a big part of the recovery. We know that life has changed, we are incredibly glad to have my husband still with us and because he was so healthy when the NASAH happened, his prognosis for a 'full recovery' is very good. We don't know if he will return to his job as a locomotive driver, but we know there are more important things in life. As I said to him, we can't go back , we can only go forward. Having a health crisis like NASAH is confusing and very distressing, but it clarifies what is important in life, and what the priorities are. I wish you all the best for your recovery. The stories and support I have received on this site has been incredible and a huge part of me coping and helping my husband cope. I hope you will continue to find comfort and support here, you are among friends and fellow survivors. Veronica
  3. 5 points
    Hey Andrea, Hope the flight and the scan went well. I understand the missing mum bit as had my bi annual scan this year and first time for me without mum to check up on me, come along and just, well, just Be mum..but I could feel her strength with me when I was in the scanner if that makes sense, I had felt it before when at my worst and know you can always feel love that strong. Your lovely mum was no doubt watching over you. Four years is a big deal I think. Things shift a little, you have more knowledge of this version and how limits and changes are with you and things slow a little in terms of healing, but equally still lots of possibility and healing there to come. In the words of EC, ‘carry on, carry on’ Daff x
  4. 5 points
    Karen, also a huge well done 14 years on. As a post SAH Carer of over 8 years, the support from the Mods and members of BTG were undoubtedly a major help in Mrs Subs and myself dealing positively with Mrs Sub`s recovery. We had been struggling until Winnie directed me to BTG 4 1/2 years ago. We will always be in BTG`s debt … thank you so much. With over 3,200 members and so much of value within these forums … thank you for having the vision and dedication, given your own struggles with recovery. Subs
  5. 4 points
    4 years today I had my bleed. Where does the time go? Been feeling pensive and a little anxious about it. I'm off to Glasgow on Monday for my 4 year check up scan. The last one I had was 2 years ago so having another scan suddenly brings the memories all back. Also, when I had my 1 year scan, I went with my mum. At that stage she had already had terminal cancer for 18 months. Those few days in Glasgow were probably the last quality time I spent with her as she was just overwhelmed by cancer during her last 6 months. So many mixed emotions about it all. Thanks guys for all the support. Andrea
  6. 4 points
    Hello all, I'm so glad that I've found this! I've been looking for a support group since I had my SAH in April. Mine was very much unexpected. I was getting ready for bed on a Friday night, brushing my teeth. While I was in the middle of it I got the worst headache, ever. It was so painful I had to lay down, with a mouthful of toothpaste. I also had a super stiff neck and I was so dizzy that I thought I was going to pass out. I've never fainted or anything before so that definitely freaked me out. I ended up able to get back up to clean out my mouth and get my phone to call my mom but the intense pain never left. And, that's when I started throwing up. Over and over and over. It felt like it would never stop. My mom didn't know what was happening, so she told me to take something and try to get some sleep, lol. But, I knew something was wrong after the pain wouldn't go away so I ended up taking an uber to the hospital. I brought a trash bag with me in case I needed to throw up. I didn't in the car, luckily, but as soon as I was walking into the hospital it started again. Once I got inside the hospital I signed in and they pretty much brought me back instantly. This is where I stopped remembering things. I have no memory of anything that happened at this hospital or me being transferred to a bigger hospital for my treatment. A few days later I finally came to in the hospital bed. They ended up coiling my aneurysm. They had put a drain in my brain. My mom and my brother had come to the hospital but i don't remember that. Once I came to myself and realized what was happening it was so very scary. I couldn't get up and walk without having to call a nurse because of my drain. I had days and times when I was in a lot of pain. If I sat up quickly when someone came to visit, I'd get this crazy pressure in my head and I couldn't move. The only thing that made it go away was when I eventually threw up. I had that happen a few times. I was in the hospital until April 21st, after they were able to remove to drain. One thing that surprised everyone - especially the nurses - was how I was able to do everything for myself from the beginning. I never needed help walking or going to the bathroom. It was like I was the same person just tired and in pain. I watched a lot of TV. During the first few days the only thing I noticed that was hard and I was struggling with was texting people. I was typing a bunch of gibberish, but that went away within a few days. I'm told I'm lucky. Most who live through this have deficits. I don't have any. I went back to work a month from leaving the hospital and I was driving right away. I was alone in my apartment within a day or two after leaving the hospital. What I have now are almost daily headaches. I get tired easily. I end up working from home at the end of most days because working exhausts me. All of my CTs so far look good. I'll have a cerebral angiogram in Feb 2020. If that looks good he told me I won't have to see my neurosurgeon again. I feel blessed to be alive. I hope so badly that the headaches will start to lessen. It's so nice to meet you all.
  7. 4 points
    Congratulations on 14 years. You are a beautiful lady inside and out.I will never be able to thank you enough for creating BTG..You have brought together so many people who need help, support, inspiration,a good moan or even better a good laugh.😀THANK YOU KAREN. A great big well done on travelling 14 years on this bumpy road that we’ve all found ourselves on. Love Jan xx
  8. 4 points
    Thanks for putting up with me in early days and you and your group of Mods & Family, have put up with my mess ups and singing in the middle of posts ...Ha Ha what a pain I am lol . Glad you got this site up and running Karen as it is a life saver ..planning funeral to getting my moJo back and being the pest I have always been. Love all my BTG Family lots and see God sent you to us as he needed you to help us XXXXX Love you Karen and thanks for everything xxxxx..Want a song j/k xxxxxxxxx
  9. 4 points
    Congratulations Karen on this 14th anniversary. Lovely photo - how you manage to look so good on such a hot day is advice I'm much in need of! I'm sure it will give much inspiration to those who are not so far down the recovery path - and here's to the next 14. Sending love and thanks, Sarah
  10. 4 points
    Gorgeous darlink!!! - Wish I looked half as good lovey. Happy Anni-versary - you're an inspirational woman who a lot of people owe their sanity, and possibly their lives, too - I know I owe you big time!!! Lots of love and hugs xxx
  11. 4 points
    Hello, I had an SAH whilst shopping 9 weeks ago. Luckily someone called an ambulance for I was all for going home to sleep! At A&E I was told there was an air ambulance on its way to fly me to Edinburgh as there are no facilities for surgery further North in Scotland. I had a coil inserted and got home after 2.5 weeks. After initial left side weakness, and lots of horror stories, I am amazed that apart from tiredness, I seem to be making a full physical recovery. I do worry that the coil will fail and that I won't be so lucky if it happens again. It's good to have found a group that I can relate to.
  12. 3 points
    Thank you, for all of your lovely messages! My aneurysm isn't totally fixed and next brain scan will be in 2020....keeping everything crossed etc ... as you do! However, it doesn't freak me out, as it would have done in my earlier years... I've been lucky! Win, just keep singing and love you lots too...xx Here's to next year and taking things a day at a time and enjoying the moment! xxx
  13. 3 points
    Huge congrats on 14 years, you are beautiful ..You sure do give me comfort...thank you for sharing. Jean
  14. 3 points
    Hey Sarah! Thank you and I'm not sure how you've juggled all of the balls in the past ... hope that you're managing a little more rest and relaxation. It was so lovely to meet you at Donna's a few years ago ... time passes too quickly. Love and hugs to you too....xxx
  15. 2 points
    Thanks everyone for your kind comments and advice, it's greatly appreciated.
  16. 2 points
    I was a similar age to you when I had my bleed (I was 39). My advice would be: - Drink lots and lots of water - Have a lie down or nap, even for just 1/2 hr, every evening - does wonders to just give your brain a little rest for a while. I had a whole year of this and still do it when stress levels are high - Take it easy with work. I had 3 months off and then 3 months building back up to full time. I'd recommend either Fridays off to give you a long weekend or Wednesdays. Wednesdays I found particularly helpful so that I was only working 2 days at a time - Build up your own confidence regarding exercise. Whilst I can't prove it, I'm sure strenuous in the days leading up to my bleed had some effect. But that's my own thoughts. I built up slowly, maybe only managing 5 mins walking at first (I was afraid to go out of sight of the house). I have found swimming to be an excellent, low impact exercise. I've recently gone on my bike for the first time, managing ~18 miles. Wonderful to have that freedom again (with a helmet of course!!). I wish you all the best in your recovery. Andrea
  17. 2 points
    Hi Perry, Welcome to BTG, sorry to hear that you suffered SAH, I think you will find by reading a lot of the personal stories of people who have joined this wonderful group, that a lot of us are discharged without much information about what has happened to us, I know it can be a very scary time, you are not alone, you have come to a great place for support and advice. I personally didn't have a craniotomy, I had coiling, I had my SAH in June 2014 and my follow up was November 2014, it may seem like a long time and feel like a long time but as Jess said they usually leave a while in between surgery and follow up to give you some time to recover. You will have all kinds of questions to ask them, try to make a list of everything that you would like to ask because it can get a bit overwhelming, then you can give them your list when you go in for your consultation and I am sure they will do there best to answer as many as they can. Try not to worry to much, I know it is easier said than done, just try and relax, make sure you are drinking plenty of water and make sure that when you are tired you get plenty of rest. Your brain and your body have suffered trauma and they both need to recover. Recovery can be a slow process and the recovery road can be a bit bumpy at times, listen to your body and your brain they will let you know if you are overdoing things, take things slowly and be kind to yourself. Hope you continue to recover well and you keep on improving. Love Michelle xx
  18. 2 points
    Forgot ..A Lovely Photograph of you Karen xxxx See smile radiates from within xxxx
  19. 2 points
    Congratulations on 14 years and thank you for having the foresight to create this site, that must have been very difficult for you in the throes of your early recovery. I, for one, have found the support and information invaluable
  20. 2 points
    Karen congratulations on 14 years xxx Thanks for all you have done/and continue to do xxx
  21. 2 points
    Thanks Subs, that's so lovely!! and also thank you, for all of the help that you give to me and this website. Your friendship is very much valued. Love and hugs xx
  22. 2 points
    Just thought I would share this article I found as this is a fantastic explanation of what happens during an sah and why: https://www.womenshealthmag.com/health/a19995966/brain-aneurysm-symptoms/
  23. 2 points
    Hi Yun, No trivial questions when it comes to brain surgery after effects. I also had clipping. The incision ran down my right side hairline. Don't want to be too graphic but scalp was pulled back and skull bone removed to get to where they needed to go. The skull pieces were repaired with "bondo", and these areas ache when the weather changes or I'm tired or stressed. As for the scalp, it was explained to me that as all the disturbed nerves heal, it would feel tingly or itchy or like something was crawling . That took a very good while to go away. Even now, 10+ years later, sometimes I get a sensation of numbness, usually associated with fatigue, stress or too much caffeine. But nothing like the early days. It does get better, slowly but surely. Colleen
  24. 2 points
    Hi and welcome! It’s been 2.5 years since I had my bleed, and though I am doing well, I have had to adjust my life. You will find this group a great help and wonderful place to share your feelings. The hardest aspect of recovery for me has been my mental health. Anxiety and fear seem to lurk in my psyche. Time, friends, family and this community, have been a big part of my recovery. You are still fairly early in your journey to recovery and it is very normal to feel anxious. I honestly think that along with the physical help to recovery we receive, we should be able to receive some counselling for our mental well being. Even after this time has passed, I can still get caught up with the “what if’s”. I wish I would have discovered this group earlier in my recovery, I would have realized that my feelings were also shared by others. Visit here often, and don’t be afraid to share your feelings, especially if you are needing reassurance. Chances are somebody here has experienced what you are struggling with at the time. Take care of yourself, rest is your friend😊 Sending you healing thoughts. Pat💕
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