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Forums

  1. Subarachnoid Haemorrhage/Stroke Discussion

    1. 22,919
      posts
    2. Non-Aneurysm SAH or Perimesencephalic SAH

      This is the forum to post in, if you've experienced a SAH with no known cause.

      5,074
      posts
    3. Subarachnoid Haemorrhage Polls

      This forum allows members to post a question on Subarachnoid Haemorrhage matters which should also include a Poll. All newly started Polls will be subject to Admin and Moderators approval before they appear on this forum.

      276
      posts
    4. Stroke Discussion

      For all other types of stroke and childhood stroke

      677
      posts
    5. Carers Support

      Discussion for carers of an SAH or stroke survivor.

      3,360
      posts
    6. Untreated/Unruptured Cerebral Aneurysms

      Please post here if you're living with aneurysm(s) that haven't been treated or totally occluded.

      1,257
      posts
    7. SAH/Stroke Anniversaries

      Please feel free to post details of your SAH/Stroke Anniversary here .

      1,032
      posts
    8. Cerebral AVM's - Arteriovenous Malformations

      An abnormal connection between veins and arteries, usually congenital.

      70
      posts
  2. General Discussion

    1. Advice & Tips/Healthy Living/Benefits

      Tell us what you've found useful as an aid to your recovery (such as relaxation techniques etc.) and discuss natural diet advice/healthy living tips. This is also the forum to post in, if you need or can offer advice on Benefits that can be claimed after a SAH/Stroke

      1,337
      posts
    2. Introduce Yourself

      Tell us about yourself here and please feel free to include an account of your SAH/Stroke.

      10,497
      posts
    3. Driving After SAH

      Sharing experiences of getting back to driving and useful suggestions and tips. 

      306
      posts
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  • Posts

    • Thanks CaseyR will definetly start a daily journal
    • I spoke with someone today, she was very nice and very understanding and is going to investigate.  I have no issues with the neurology team apart from lack of advice and follow up but that seems to be the norm. It is purely the endoscopy staff who failed to recognise and respond to my obvious distress and sent me home when I did not know where I was or how I had got there. I realise I am quite fortunate to still be here.   When the investigation has been completed I will take some time to decide what to do, if anything. It took me three months to be able to talk to PALS in a calm factual way and it was them who started the ball rolling a month ago.  I would hate anyone else to go through what I did during and after procedure. The memories will fade, in time, but at the moment it's very raw and I live alone. It does help to talk about it with friends, then I'll just change the subject.   At least I'm not waking up at 5 am every morning and remembering a nurse shouting at me to open my mouth and trying to to force a tube down my throat while I was having a brain haemorrhage, so that's an improvement.  Best wishes to all.
    • Not much I can say what hasn't already been said Vicky xxx   My Surgeon told me I must try and not stress after my bleed, so if you think getting it off chest will help or make you stress more ?? Do what you want to do and then move forward.    I wish you all the best (This is where I normally say sing but  you seem to have been through it)   xxx   regard Win xxxx      
    • Hi Vicky.   Welcome to BTG.   Firstly, your health is your absolutely number one priority.   You need to keep going back to the team that treated you to seek re-assurances, to ask questions and to be sure the treatment you are receiving is the correct treatment.    Then you can follow up your complaint - and if you were unhappy, you were absolutely right to complain. However, make sure you do it diplomatically  and in the right way - you don't want to bite the hand that feeds you - nevertheless, they need to know that what they did wasn't acceptable. If, they say that saving your life was their priority, rather than having good manners, then you could cut them some slack.  How else would they find out, and improve things if people didn't complain?   In terms of talking about it making your blood pressure rise, I think there are a couple of points to bear in mind.   1)  The clinical team are there to look after your medical needs, not your social ones, so sometimes it can seem as though they have just turfed you out and cut you off.  It's just not their field of expertise that's all.   2)  Find a close friend to talk to in a calm situation who can sit down with you and let you talk about what has happened to you, without judging you, or telling you that you may be getting upset too easily. They just need to let you get it all off your chest, and you will feel a lot better for having done that.   3)  Set down some questions on paper and then approach your doctors armed with that. It is much easier to do that and talk in a structured way than with an adhoc approach that can get out of hand because of your understandable emotions, in play because of what you have gone through.   4) Although the people treating you are probably very good at what they do in repairing you, in almost all cases, they have not lived the experienced themselves, and so they don't have that social empathy that we have for you, for instance.   5) Now that you have complained, let the investigating body do their job, they are taking the strain for you now, so try not to get too worked up about it. you can only make your next move when you get a reply to it.  In the mean time, talk to people, such as your friends and family, who you know will lend you a sympathetic ear. It is very difficult for you, being at the centre of this, not to get emotional because it is without doubt, a very real and terrifying experience to have lived through,   However, you will find that their response may feel 'matter of fact.'  If I were you, I would get your friend or family member  to open the letter in your presence, and take you through it line by line, talking about it as you go, making sure you take in what it says, with their support to hand.   Just my opinion, that's all.   Good luck and best wishes,   Macca
    • Hi Vicky  welcome to the site, glad you found us.   Oh what a horrible ordeal for you to go through,  the chances of you actually having another are low but that feeling is horrible think everyone feels like that in the beginning it will ease - honest. of course you had to make a complaint that was terrible and no-one should have to go though that.   I hope you get some sort of resolution to this..   hope you find the site helpful.   take care
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