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New on this site Spinal Stroke

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Aurelian
Aurelian Community member Posts: 2 Listener
Hi all
I am new to this site which i came accross while searching the subject Spinal Stroke which is very dear to me. There seems to be a forum on the subject and people who discuss the condition. So i would love if somebody could steer me into that circle. Maybe i could add something. 

Its a rare condition and i used to think i was the only member of this very special club while swimming around on the  web looking for other rare members of the species. Over a decade without a sighting.

So if there is anybody else out there who can tolerate being in contact with another club member, dont hesitate to communicate.

Comments

  • Sandy_123
    Sandy_123 Scope Member Posts: 52,468 Disability Gamechanger
    edited May 2022
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    Hi @Aurelian hi and welcome to the forum.  Thanks for telling us about yourself.  It can feel isolating when you can't find groups with same conditions. I have found a link you hopefully may find useful below.

    https://www.brainandspine.org.uk/our-publications/our-fact-sheets/spinal-strokes/

    I don't have your condition there may be someone on here who does. Feel free to join in on the forum, with the topics. Always someone to natter to.
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
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    Morning @Aurelion and welcome to the community, I hope you are well.

    Thanks for joining us and telling us a bit more about your condition, it can be difficult when the condition you have is so rare and you haven't been able to find others with it.


    Were you able to find another thread on the community in which it was discussed? I found this thread through a Google search but it is from a few years ago now.


    This is a very supportive and welcoming site to be a part of so I’m sure you’ll find it to be a positive outlet, feel free to have a look around and get involved wherever you’d like 😊 A few notable pages I’d recommend visiting would be:

    • The virtual coffee lounge which is one of our categories, in which we play games and talk about general subjects such as hobbies and interests
    • The recent discussions page, which shows an overview of everything happening across the community
    • The categories page, which shows a full list of discussion groups on the community

    If you have any questions at all then don’t hesitate to ask.


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  • Aurelian
    Aurelian Community member Posts: 2 Listener
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    Dear Teddy Bear, Sandy and Ross

    and all those who welcomed me, thank you for the welcome and the steering link back to the spinal stroke forum.

    My injury is a very rare thing called  Fibrocartilagenous Embolism leading to spinal stroke. Up to 1996, there were no known survivors, in 2010, 3 perhaps worldwide, yrs truly inc got bronze. The other customers i have not yet met. More recently, it is increasingly recognised as a cause of mysterious sudden paralysis, perhaps, accounting 5% of all spinal conditions some experts speculate recently. Thats about 57000 cases annually across the globe.

    Years, actually more than a decade reading all (the few) papers on the topic, speaking with the experts,  proving it in an ugly court case, learning to kind of walk,  living the life,tons of files , DIY therapies, pain, joy and a bit of agony and relying on some past training in a related medical field, it seems that it all this complex stuff and its jargon boils down to obvious observations that could have been made long ago.  A little body of knowledge about a rare thing is far better than a time consuming mystery.

    So much can be improved for so many by simply speaking about the condition, getting it online,  and describing related conditions which are little known even among spinal care professionals.  And above all, your supporters making sure you stay on the right tracks in hospital and at home as you go through this labyrinth of mysterious events. And they will search on line in the way that they can.

    Anybody with a specialist interest in this, your contact will be welcomed and i will always try go help.

    Regards.


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