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Karen

Patient Experiences of SAH Video

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We have very kindly been given permission from Wessex Neurological Centre (Southampton, UK) to link to their Patient Experiences of SAH video. :-D

I was treated at Wessex Neuro, along with quite a few other members on here, (some original BTG members feature) A few of you, will have already seen this video, but it's something that I believe would have been really helpful to me, in my early recovery months. The video is just over 30 minutes long, but it offers very useful information.

With grateful thanks to all at Wessex Neuro, the charity donations that helped to raise money for this project and to the SAH'ers that also participated.

If you would like to leave feedback, then feel free, but please stay "on topic" with any comments.

To view the video, click on the following link

http://www.uhs.nhs.uk/OurServices/Brainspineandneuromuscular/Neurovascularservice/Neurovascularconditions/SubArachnoidHaemorrhage/PersonalExperiences/Videopatientexperiencesofsubarachnoidhaemorrhage.aspx

(The link to this video often changes, if the above link doesn't work, try carrying out an internet search using the following keywords - uhs nhs video patients experiences)

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My lasting effects are more to the physical side than the cognitive, but that was a great video!

I'm 22 months on from a Grade 5 - my energy levels are certainly better and emotions not quite as whacked out. I have made a point of going out since my first day home so it doesn't phase me now. I used to be up all night thinking about an outing...

 

I totally identified with the people talking about time. I have felt like it takes *too* long out of the time here, but then again my time could have ended with the SAH so I am trying to appreciate this time I have been given. So instead of looking at how long I'm recuperating, I'm trying to look at the bonus time I'm living.

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Hi Karen.
Thanks for posting this link, it was all very relevant to my own experience, especially the man who became emotional......that's me!

The other comment that struck a chilling chord was the "limited time" feeling.
That is exactly how I feel.

 

I feel I must tie up loose - ends and produce works that will remain after I have gone. Since my SAH I have been prolific in my writings, (I was lazy and wasteful before).

 

Two plays, two albums of music, four short stories and countless poems. It's as if I have accelerated the creative process to a manic pace that drives me on to new things everyday. Another contributor said that maybe, after recovery, there could be an improvement ( I think it was the man with his daughter). Well, that, again, is exactly how I feel. The clarity and directness that now fills my life sweeps aside all the nonsense and trivia that used to bog me down.I now have no time for insignificant twaddle.

 

Thanks for the film, It was a real validation of my own experience.
Speak to you soon,
Bill B. x

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Thanks for your feedback guy's and I just wish that this video/DVD had been available to me in the first 12 months of my recovery and this type of site also for the support.

Bill, I also have a "limited time feeling" and like to tie up any loose ends ... I also don't have much time for insignificant twaddle either! ....Not sure whether this is a good trait or not, as I haven't got much patience for stuff that really doesn't matter! :wink::lol:

I also look at my SAH anniversary, as being a time of celebration and extra time spent with my family and children .... many SAH'ers don't get that extra time, so I always feel blessed and it's something that I don't take for granted.

Thank you all, for your feedback. xx

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Wow

it was very emotional watching other survivors talk about these experiences which are so close to all our hearts

I have forwarded this to my husband to watch as I still find it almost impossible to discuss my feelings without getting over emotional

I hope this will open a dialogue

Thanks for sharing this karen

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Karen, when you say this DVD, is it available ? I say that because as much as I feel and do talk about things with my Girlfriend, she could maybe watch this on her own and save us lots and lots of tears.........:wink:

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Hi

I found this so helpful,to me. To see actual real people talking about their SH and how this was dealt within this hosptial, using their treatment methods, which they offered. I wonder if like me having my first Annie done in 2001. I did not have any information about what had happened to me then. Everything just moved so quickly, I just felt I was in the hands of my skilled team of Doctor's.

 

I don't know if I could have taken in a film like this at that time. I may have been more frightened to what could have happened to me then. If I had seen something like this.

 

Having to go in again for the second Annie and having a SH during the operation, not that I knew that a bleed would happen during the operation. This being in 2010, I felt more in control.I had more knowledge about what was going to happen to me etc.

I like Karen, can't even waste my time with daft, silly things. Have far too much to enjoy. Really simple pleasures, in life that don't cost anything.They make me happy and smile.

 

Take care

Love Sonia xxxxx

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Karen - Thank you for posting this link!!! I also wish this had been available from the hospital, or at least a link to it! Thanks also to the survivors and their families who participated in this - so very helpful, even for me at 1 1/2 yrs. post SAH! I would love to post this on other sites - not only for the suvivors themselves, but also for family and friends who may be struggling with understanding what's happened to all of us! Again, many thanks for this and ALL you do to help us :smilewinkgrin:

Much love to you and yours,

Carolyn

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Carolyn, glad that you found it helpful! :-D I'm sure that as a private individual that it wouldn't be minded if you passed on the link to others who would also find it beneficial. xx

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What a interesting & emotional video. I wish i had seen this in my earlier stages as i can also relate to many of the things mentioned - but at the time probably wouldn't have concentrated on it! Would have been great for my husband & family though. Thanks for putting this link in Karen :-D

Juliette xx

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I watched this for the first time today & wish I'd seen it before. It was nice to see Mr Sparrow on there & then also to hear the stuff we all know about, tiredness, emotions, noise, concentration etc! I am so looking forward to the support group this weekend & I'm sure it will help me even more.

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My husband found this link also......I think it helped him.....Never know with hubby he keeps his feelings shut away.

A bad thing I tell him ....Does he listen No Way ! lol

But couldn't wish for a better hubby and daughter ...mind you I still moan at them, Gosh I must stop

Hope you are All Well

Regards

WinB143 xx

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Hello Karen

I've very recently had a SAH and am trying to gather as much info as possible about recovery and have found a lot of information on this site very useful - thank you for establishing the site. This video sounds like an excellent resource but unfortunately the link no longer seems to be working, do you know whether it has now moved?

Many thanks

Emma

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Unfortunately the NHS website where this video can be viewed have changed their link, probably due to site upgrade. Hopefully the following link is correct. http://www.uhs.nhs.uk/OurServices/Brainspineandneuromuscular/Neurovascularservice/Neurovascularconditions/SubArachnoidHaemorrhage/PersonalExperiences/Videopatientexperiencesofsubarachnoidhaemorrhage.aspx

(The link to this video often changes, if the above link doesn't work, try carrying out an internet search using the following keywords - uhs nhs video patients experiences)

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Thank you so much. I'm wondering if it could be placed as a permanent link under the recovery section here on BTG? This would have been so helpful early on. I had trouble concentrating long enough to read anything at first and all anyone wanted to share with me was in written form.

Great video!

~Kris

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I posted this video on my Facebook page ( I only have close friends and family) and sent it via email to the rest of the people that "I needed" to see it. Thanks so much for the link. maryb

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I have downloaded the video so if needed I can load it to YOUTUBE and keep it in one place (until Youtube moves or changes that is).

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Hi Julian, the video isn't the property of Behind the gray to upload to You Tube.  The owners of the video are the NHS who have kindly allowed us to use the page link to their video and would imagine that it is subject to copyright etc.

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I suppose I am lucky having watched this video at such a early stage as opposed to most of you guys. There was lots in that which I could relate to but on the whole, I feel very lucky not to have had the symptoms most have in their recovery from a SAH.

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Thank you so much for this video. I am in the US and have found very little support for SAH. It has been 11 months and my doctors are surprised that I still have symptoms, so I was beginning to question myself. This video gave me self assurance, and patience with my headaches.

R. B, Missouri, USA

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I have finally got around to watching this video, I kept putting it off knowing it would probably be quite an emotional experience and it was, there were tears, but it was also very positive, I needed that at this moment.

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