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EXPERIENCE

Posted , 3 users are following.

TONY_JOHNSON
TONY_JOHNSON

BACK IN NOVEMBER 2005 I HAD A VERY BAD PAIN IN MY LOWER BACK, AFTER 3 DAYS I WENT MY GP AND HE ASKED IF I HAD ANY NUMBNESS WHICH I DIDNT HE SAID IT WAS PROBABLY A TRAPPED NERVE I TOOK PAIN KILERS WHICH HAD NO EFECT AND FRIDAY I HAD NO BOWEL MOVEMENTS AND BY THE SATURDAY I HAD STOPPED URINATING.

ON THE SUNDAY MORNING MY WIFE TOOK ME TO CASULTY AT SWINDON HOSPITAL.

FORTUNATLY FOR ME THE DOCTOR WHO WAS IN A AND E CALLED A COLLEGUE AND HE SPOTTED THE SYMPTOMS STRAIGHT AWAY AND I HAD 4 MRI SCANS ALLTHOUGH THE DEPT WAS CLOSED ON A SUNDAY THEY GOT SOMEONE IN.

THEY FOUND A ABCESS ON THE BASE OF MY SPINE, I WAS PUT ON A CATHETER THAT WAS A RELIEF AND GIVEN MORPHINE FOR THE PAIN AND THEN TAKEN LATE AT NIGHT TO OXFORD WHERE I HAD AN OPERATION IN THE EARLY HOURS.

AFTER THAT I WAS IN HOSPITAL ON ANTIBIOTICS FOR A MONTH.

WHEN I LEFT HOSPITAL IWAS STILL ON THE TABLETS AND STILL HAD A CATHETER.

AT NO TIME DID ANYONE MENTION THAT I HAD CES, IT WAS ONLY WHEN I WENT TO A CHECKUP SOME MONTHS LATER THAT A NURSE WHO WAS CHECKING ME FOR FELLINGS MENTIONED CES AND WHEN I GOT HOME I WENT ON THE NET AND SAW THAT ALL THE SYMPTOMS I HAD WERE THE SAME AS WHAT I HAD.

I REGAINED THE ABILITY TO URINATE ALTHOUGH IT IS DIFFERENT NOW I JUST STAND AND WAIT FOR IT TO COME OUT ALTHOUGH I CAN STOP AND START INTERMITANTLY, THE BIG PROBLEMS ARE MY BLADDER PRESSES ON MY BOWL AND VISA VERSER AT LEAST THATS WHAT IT FEELS LIKE AND YOU HAVE THE FEALING YOU NEED TO GO MORE THAN YOU DO.

I HAVE NO SEXUAL FEELING AND CANNOT GET AN ERECTION I HAVE TRIED VIAGRA WITH LITTLE SUCCESS.

I GET SHARP PAINS LIKE SUDDEN ELECTRIC SHOCKS SHOOTING UP MY RIGHT LEG, MY ANUS AND MY GENETALS THIS I BELIEVE ARE THE NERVES.

I HAVE NUMBNESS IN MY SADDLE AND INNER THIGHS AND GET WHAT IS CALLED HOT FOOT SYNDROME.

BUT I AM VERY LUCKY COMPARED TO SOME WHO CANNOT WALK AND HAVE FAR MORE PAIN THAN I HAVE.

THE CAUSE OF THE ABCESS WAS A GERM WHICH STARTED IN MY MOUTH OR NOSE WHICH IS COMMON TO EVERYONE THE CHANCE OF IT DEVELOPING THE WAY IT DID IS QUITE RARE.

I AM HOPPING THAT THE SAME CHANCES ARE GOING TO LET ME WIN THE LOTTERY

TO ANYONE WHO HAS THIS CONDITION, DONT GIVE UP THINGS CAN GET BETTER

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    i have all the same symptoms as you and also have never been told about ces.

    i can relate to you also because it happened to me suddenly too.i went to casualty on the saturday in january 08 with excruciating back pain and was sent home with painkillers and a diagnosis of period pains.3 days later i am rushed in as an emergency as my disc had slipped out completley.

    i am left with numbness in my bottom area,right leg and both feet,have incontinence and mobility problems.there are a few more urology test i have to have.i also experience what you call electric shocks,i call mine fireworks.lol.they are like small hot explosions that travel down my legs and little but more painfull ones in my right foot.i cannot experience orgasm anymore because i cant feel anything there and because of my incontinence.

    once i got over the shock that instead of being nearly 40 i am now like a 70/80 year old health wise and started to restructure how i can do day to day things i have found it easier to cope.

    i have just started asking for help ie:benefits and seperate treatments for my different ailments.i needed to realise that i am now not able to do alot of what i used to do but i can still do alot of other things and try to focus on them.

    thankyou for writing your experience,i didnt realise there was ces untill i went and got a med4 form today.

  • Guest
    Guest

    Posted

    i to have c s e thought i was the only one i got it frome a car accident,i have all the usual problems ,but take heart even though some days are bad and some days very bad u learn to cope. i now have a job thanks to meds and a great boss who understands.
  • franny
    franny

    Posted

    I have acquired CES and what a nasty injury it is. You do isolate yourself as it knocks personal and social confidence lowers your self esteem. Nearly 3 years later I'm accepting all outside help. You have to or the negatives weigh you down. You MUST join some disability group, use them as a stepping stone and regain contact with people who at least have experience with what is melting your head. Get referrals from your GP for podiatry, a depression group (you wil have mental issues, your not mentally ill). My CES came on me overnight. Absolutely no notice. I have a weak right leg, no sensation in butt, genitals, back of right leg, a very weak ankle, and consistant electric shocks that can only be described a tazer gunshots running from hip bone to toes. I can lift up to 1 litre of fluids, any heavier and the tingling tazer reminds me to stop immediately. I go to the swimming pool twice a week and kick madly for exercise. It also helps you mentally as you hope it might waken a sleeping muscle. I've started going out for a walk. I'm on two sticks so its my nightmare going out and pretending I'm enjoying it but I was pleased as many people say hello. I used to work a 60hr week so I was busy and this SCI has lessened every aspect of my life but I do realize the head thinks the body is normal and the body cannot respond as fast. I have many issues, acceptance is nowhere near me yet. I've never stood in front of the mirror and looked at my body - I'm not even tempted. I speak to a councellor weekly who I trust with all my new thoughts. She is never shocked at my outbursts, reassures me that anger, grief,denial etc are all part of the journey. I am shocked that I was so healthy before and now I'm not. I feel disappointed in myself but I'm grateful of my inner strenght for it has pushed me and the professional help I get I use positively. You must think of yourself as a priority for a while as you get your head around this injury. For only you have to live with it. And learning to live with it is a bit of a rollercoaster. Good luck
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