Hi, my name is Dave555! I am interested in other Cauda Equina Syndrome sufferer's

Dave555
Dave555 Community member Posts: 4 Listener
edited December 2022 in Rare, invisible, and undiagnosed conditions
Hello anybody,not looking for anyone,however I am interested in other chord aquina sufferer's.especialy nerve suferes.

Comments

  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,906 Championing
    edited December 2022
    Hello @Dave555

    Welcome to the community! :) How are you today? 

    I don't know much about Cauda Equina Syndrome, but I can see it is hard to diagnose from some online reading. I've popped your post in our Rare, Invisible and Undiagnosed Conditions section, in the hopes you do find more people to talk to :) 

    I would like to know more from someone who lives it, if you are willing to share your story :) 
  • Dave555
    Dave555 Community member Posts: 4 Listener
    Hello Hannah.
    Thanks for your reply.
    I am a spinal patient having a l1  2 3 and 4 .
    No problems with that but my chord is damaged and I suffer with terrible pain ,even with medication.
    Just wondering how many others suffer with a similar condition.anyway many thanks to you .
    Dave .
  • chiarieds
    chiarieds Community member Posts: 16,331 Championing
    Hi @Dave555 - & welcome to the forum. I know we have one member @Daniel_2021 that also has Cauda Equina Syndrome, but I'm not sure if he's currently active. Hoping you may perhaps connect as I've been in touch with him before & am sure you would get on. :)
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,906 Championing
    Hello @Dave555

    I'm so sorry to hear you are in such pain, even with medication. Hopefully we can find some more people for you :) I also hope you do find something that helps that pain. 
  • Dave555
    Dave555 Community member Posts: 4 Listener
    I still after five years ,hate being in a wheelchair, I hate being in so much pain. And yet I still keep my sense of humour, and still enjoy things I used to do, but I know its not the same and never will be I know iam not alone. That is comforting. 
    Right away people have replied and thats really is nice .
    Anyway I was booked in for this brain stimulating treatment ,and found out there was a chance of it causing an epileptic episode ,someone in Finland had had an epileptic episode, that's when I found out I would would have to give up driving if I too had one .I refused the treatment.
     Anyway back to square one.  original medication and sleepless nights.
    Right my next post is going to be really positive. No more negative vibes. 
    Just one more sad note my son is a car nut and decided to clean the carburettor, well one of them on his old jaguar. So what he did he got a saucer of petrol to clean the jets ,the whole house stunk of petrol ,so I said get that out of the house ASAP, we went in the kitchen and our new little kitten was lapping the petrol out of the saucer, he ran over to stop her she went wild up the blinds jumped onto the extractor fan then jumped on the worktop by the toaster then fell flat on the kitchen floor .all we could do was take her the vets.he rushed us straight in but it was bad news .
    He said you pair of fools she's ran out of petrol. 
    Are you allowed to tell jokes ?


  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,906 Championing
    A good sense of humour is always a great comfort, but I hope you do have someone to talk to when you need to. You can always vent here :) 

    Oh no, that is such a shame, that this treatment could help in one way and hinder in another. Do you keep up to date on the progression of that treatment? 

    Negative vibes are fine, we all have to get them out. 

    Haha yes, you can tell jokes lol. I always just put a little note at the end to say it's a joke and is my humour. More so as this is an accessible website and screen reading technology doesn't always pick up on humour and sarcasm. 
  • Dave555
    Dave555 Community member Posts: 4 Listener
    My story is quite unbelievable.
    Not to take anything away from yours ,as they say no two spinal and all that.
    I since 2018 have been in constant pain sleepless nights always ,I drink morphine for fun ,not for pain ,it does nothing for that it helps you sleep through your alarm and then you wake up in a pool of pee so that's not pain relief just a nasty liquid that is used when I can't cope.
    My 💖 goes out to any one suffering chord aquina.
    On top of all my pain beside losing bladder and bowel function,I was burnt in the theatre.five years later and 60 %,loss of my right back side,four times I had sepsis, I would say lucky to be here but I don't know about that ..oh can't walk so lovely wheelchair's and mobility aids ,partial paralysis in my left hand ,eight months on my left side sorted that out. 
    Now pain management 😬
    I had a brain scan to have brain stimulus treatment just before I was due to go i received a leaflet explaining everything,then it told me there was a risk of epileptic episodes.
    So that got short thrift.
    Sorry I could go on and on and some .
    Your right a dog would have been put down..I cannot sum it all up ,I can't explain the pain or agony at times I be blown if I understand it .
    Ps anatriptoline if that's the correct spelling ,read up on it then throw it down the loo it really is no good .
    But thank you for your response and I truly hope you greatly improve ,stay in touch ,my Tails of bad practice and incompetence are unbelievable.remember this just like you can employ a good joiner there are many who are not very good too , doctors are the same just some are arrogant bad mannered idiots too, thankfully some are good joiners 😂😂😂 .beside all that l am in good spirits,and working on it as best as I can every day .
    My wife calls me ,well I can repeat that but oh what fun .
    Stay in touch .
    All my thanks Dave.
    Ps sorry about my poor English
    Iam half German,the bottom half I think.😂

Categories