hi,nic from canada

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in reply to people getting beter with cauda equina syndrome,,i know i sure didnt,,ive had it now for 11 years and theirs been no improvement and i know it never will,,once them nerves in your spine have been compressed by injury or what ever,their basicaly toast,,its a shit way of living,,the only drug that works for me to physically and emotionaly deal with it is morphine and hydromorphine,,taking about 200 mg a day,,those drugs work good,,sometimes with this cauda equina syndrome i think its good to get away from reality and quit thinking about it because its sickening,sometimes i feel like taking saw and cutting my leg off because it feels like a oiece of wood,,and i have tried everything thats available to try to make it beter but nothing does,,its all false hopes and companies wanting you to spend your money,,i originally did self catherization for about a year untill i cured that myself,,i got my bladder to start working again by drinking gallons of water everyday,,i basically forced it to work,,doctors dont want you to drink to much liquid when doing self cathing because of risk of infection but i found out thats bullshit,the more you cath the better chance your bladder can start working again,i have permanent foot drop and only walk short distances,,basically what caudia equina syndrome does the older you get it causes more issues with your health in different parts of your body,,their is no rosey picture to be painted wit tis illness,,once you got it you got it,,the only way to help prevent from getting this is having regular mri scans to see what condition your spine is in,,because at the first indication of disc problems thats when something should be done,,dont leave for years cause you feel ok,,because once you have a massive herniation of the spine its to late,,basically once you have cauda equina learn to live with it and move on because it dont get better,,the day that doctors can give you a mechanical spine that might be the start of a cure for it

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  • Posted

    Hi Nic

    It's lovely to speak to people that have the same condition and I wouldn't wish that on anyone, but I became very isolated in an abusive marriage at the same time. Is hard to escape that when you can barely walk!

    I got fed up with trying pain killers, but you say the ones you mentioned killed the pain?

    I'm beginning to think I'm a bit of a miracle, because although it took 11 years to get the use of my bowels back, they did start working again!....I still have all the numbness and the uncomfortable sensations in my bottom area, but I had no option than to take myself off benefits and get out of the situation I was in with my marriage!...

    It's hard to remain positive when you are always in pain and discomfort and I actually clean peoples houses now!...Maybe I shouldn't be doing it, but it was that or end up being treated like shit for the rest of my life!...There is obviously a spectrum in how bad each case is, but I am beginning to think I'm a miracle!

    I study Psychology and want to become a counsellor and I think possibly that my own internal strength has saved me if you like!....I'm such a tough cookie as I was also an abused child! I couldn't have got through any of it if I wasn't...I think your state of mind has an effect on a lot!

    Maybe you have a different opinion?

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  • Posted

    hi,yah well morphine is the only drug that works for me and doctors dont like to give it because its a narcotic,my wife passed away about 5 years ao from cancer,i dont expect any improvement from this so i take morphine because as well as helping the pain it eases the mind,i havent worked since i got CES ,but finacialy im ok,i really dont think about having CES anymore cause theirs no point in it,,i know its not going to get better,,good for you for going back to work though,i cant walk properly so i dont want to work and besides im 57 years old now,i got the CES when i was 46 and it ruined my lifei could of probably got some kind of job but i figured the heck with it,i let disability pay me
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  • Posted

    I can empathise, as I remember the worst part was that in your head you still feel the same. It certainly does change your life and the emotional part is really difficult to deal with too.

    I was 30 when I was operated on and I'm 50 now. I got half way to morphine and gave up. I found it too frustrating, as nothing worked. When I was operated on they said I must have a really high pain threshold and I remember thinking afterwards, I can't believe I'm going to have to live with this horrible sensation in my bottom for the rest of my life! That sensation is still there, but it's almost as if I just got used to it!

    It's awful losing a loved one to cancer. My brother is still grieving from the loss of his wife.

    I feel I have been very lucky regarding my CES., as I CAN walk. I didn't even know that what I had, had a name, as I was a medical negligence case, so they didn't tell me what it was called. Not only did they screw up at the GP's, but they went on to make sure I couldn't follow any legal procedures! Typical!!.....

    I only came across it on the internet and asked my GP if that's what I had and I got, "At least you can walk"

    I am really thankful of that and I have continued to get stronger!

    I've never had any support outside of the hospital since it happened, so it's really lovely to speak with you.

    Thank you for replying....Lynne..X

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    • Posted

      Hi Tony

      Yes I'm in the UK...I wasn't really diagnosed at all. I just ended up having an emergency operation as I went into retention. It was all a bit of a shock at the time as nobody was listening to me when I was going numb!

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  • Posted

    i was 46 when they operated on me, it was a medical emergency as i had gone paralized from the waist down because of massive herniation in the lower spine,after my operation they kept me in hosoitil for 7 months,,i couldnt walk for the first 2 years after surgery and they told me i never would again,,but i kept trying to stand up and walk and after falling down a million times i started to walk a few years later,,my walking never came back to normal,,and i now walk with 2 canes,,or if i go shopping i use a shoping cart for support,,i dont walk long distances,,but hey any walkin is better then none,,the disability pension offered to send me back to school and pay for everything but i told them forget it and just keep sending me the money,,,at that time buy the time i turned 48 i figured school was not for me at that age,,i originally was a bricklayer and i made pretty good money and i always used to work outdoors,,even to this day i hate staying inside house
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  • Posted

    Hi Nic

    It sounds like your determination to walk again really paid off. That's amazing! Wow, you were in hospital a long time! That must have been really frustrating?

    The disability here do supply you with a certain amount of money, but they reformed the welfare benefits system to get people back into work, but didn't really offer any support in doing that!

    I'm not really into politics, but I think one of the previous governments tried lowering the unemployment numbers by putting more people on disability than they should have!

    You must have really enjoyed working outdoors but you sound like you have come quite a long way since you were first operated on! The new physical challenges are bad enough, but the emotional ones I found equally challenging, if not more. It sounds from your first blog on here that you find the emotional side of it all hard too!

    Did you have a support network, as in good family and friends?

    The internet is fab isn't it? I can't believe you are in Canada and I am in England!

    Which part of Canada are you from and what's the weather like there?

    I'm by Liverpool and we have just gone into our Spring time!.....

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  • Posted

    im in manitoba,,the weather is still a bit chilly but in a few weeks it will be beautiful outside,,when i got CES i didnt really get any support from family or friends because none of them even understood what i had,,when people looked at you you looked fine,,but none of your body wanted to work properly,im glad its going to warm up soon,i think by saturday its gona be +15,,guess that =60 degrees,,,sumers are usualy very nice here but winters are cold and snow
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  • Posted

    Hi Nic

    I keep forgetting the time difference between England and Canada. I'm none the wiser as to whereabouts Manitoba is in Canada.

    I know what you mean when you say there is nothing to see! How you pooh, or not in this case isn't exactly the best topic of conversation over dinner is it? There are lots of frustrations regarding CES though, besides the fact that nobody can see anything, as you pointed out! I had a few old guys have a right go at me when I parked in a disabled parking space with my car! How can people see what you feel? Even when I tried to tell people, they would just pull a face!

    Do friends or family support you now? Or do you get any from the health service over there? I got disability money, but absolutely no support from the health service. It was a case of off you go and get on with it!!

    Lynne

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  • Posted

    no i dont get no support from anyone,,i guess thiers nothing nobody can do,,its just me and my 2 little dogs,,i have a schizu and laapo,its like a poodle,,i get disability pension because i dont work anymore,when i park in disability parking i dont get any flack from people caus they see i have a hard time walking
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