Cuada equina syndrome ..

Posted , 5 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Do any other sufferers still find it hard to walk any length of distance and standing for long I get awfully sore and weak with overwhelming need to sit down .. ?? In people's experiences is this to expected in long term future .. Thanks in advance

0 likes, 18 replies

Report

18 Replies

  • Posted

    Hi Karen. I guess it varies slightly with each person. I found walking painful, with pressure on my hip joints and the heels of my feet due to having no muscle control or sensation in the calf muscles...I gained a lot of weight in the years following the injury, but started going back to the gym once a week, using the cross trainer, and taking strict control of my eating, and lost 8 stone in a year and a half...I feel much lighter on my feet and it's definitely made walking less painful. I'm still not as fast as I used to be, but it's made a big difference.
    Report
    • Posted

      Hi smile thanks ... Wow that's a awesome achievement you have done amazingly well .. Very well done .. I'm naturally a skinny minny .. Slightly on thinner side than would like ... That s how I feel hips ache and find it hard to hold my self up for long periods ... I can walk so far then just can't go any further ... Finds my left side from lower back to toes same difficult to manoeuvre .. Kinda stumble a lot .. ... I joined gym and exercise classes too.... Just wonder if things can improve or if it's just way things will be xx
      Report
    • Posted

      Hi smile Have you thought about swimming, maybe in the shallow waters? I should but haven't...I'm too nervous about my bladder and bowels not behaving themselves lol But if that's not an issue for you, you could try swimming. The water would provide great support, while allowing you to strengthen your muscles. One thing I've found that seems to be working is building some (but not too much) muscle, especially in the legs, to compensate the lack of muscle control in other parts of the legs, and to encourage nerve growth (diet and nutrition also help with nerve regrowth). The other exercises that are really good are the plank (which I do for 1 minute) and pushups that combine with the plank by arching the back so that the core stomach muscles are taking some of the strain, and I do 100 pushups. The core muscles provide a huge amount of support to the back. Healthy eating and exercise have made a big difference. You're lucky being a skinny minny lol Gradually building your strength over time is important I think. Keep persevering...I've had ces for 10 years now, and on the one hand it took years to figure out what I can improve by myself, and what I just have to accept as being permanent (at least until stem cell treatment becomes available). Anyway, back to the studying. I've one last assignment to finish for the year, and I'm mega busy lol Take care, Charlieย 
      Report
    • Posted

      That's a fab amount of excercise your doing ... I have a lot of bother with bowels and bladder ..but to be honest I'm not into swimming at all... Know it would. Be good for me though ... Thanks for your help and time smile ..., yeah I think I'm in a better frame of mind now to get on with things was thinking ces would be permanent ...good luck with your assignment xx
      Report
  • Posted

    Yes I will be long term but u must try to walk then sit down. I ts been nearly 6 years the pains are worse the just say the operation was to stop the compression. That's why they gamble and try all these different treatment s. Which don't stop the disc s touch the nerves. I have a load of bulging disc but the won't operate.

    Keep trying as walking helps a lot with ur core strength.

    Report
    • Posted

      Thanks Keith ... I was thinking was long term now .. I remember my consultant saying his job was to relive compression that damage was done ... I have had a overwhelming nagging feeling there's another disk out ..I had l5 removed last September .. I'm keep moving as much as can .. ๐Ÿ˜Š... Xxx
      Report
    • Posted

      I would save as many as u can I have spaces to replace the ones I've lost. On ur good days try to walk alot. Don't do much if u have a bad day
      Report
    • Posted

      Thanks Keith I will do that .. I know I would be a nervous wreck if needed any more surgery ๐Ÿ˜... That's what I do on bad days like today .. A try to make the most of good days xxx how are you ??
      Report
  • Posted

    Hi, definitely! Either standing or walking the pain starts in my left hip and then the pain and burning follows very quickly. Walking is extremely difficult and it takes my breath away at times with the pain. The sharp pain across my lower back is frequent but not as consistent as is the severe leg pain. There are frequent occasions where my right ankle hurts out of the clear blue sky and makes walking painful. Exercise is not possible, I have tried. Helping my wife clean house or cutting the grass renders me useless physically for several days afterward. I also have incontinence, when the slightest urge to urinate develops I had better get to the restroom or I will have an accident. Very embarrassing.
    Report
    • Posted

      Hi thank you sounds very similar to myself sad ... Yeah I find excercise makes me bed bound for days after it also .. And cleaning house etc takes it out me so much I need to keep testing and pain gets so sore in lower back and bum and left leg .., all the toilet issues are getting me down now but will kick myself up the bum and put a smile on face .. How long have you had ces frank?? Xx thank you
      Report
    • Posted

      Have u had a operation if not u are in trouble u must bee seen. I had all ur syptomes and had complete compression of the spine. I had urgent surgery but that was to clear the compression. I had serve never damage I have mobility problems. I lost all sensation to poo or wee have a colostomy stoma and urstomy stoma for the wee. They left my bladder in but it went septic. So that was removed. I have had 2 hernia operation the last one in march was alot of evasive surgery I have a belly full of mesh. All this as I was left after they knew I was left for 6 day. I still have back leg feet hips all the same pains as before I am on strong medication . U are in trouble sort it asap.
      Report
    • Posted

      Wow, Keith I just read the complete message. Not a good deal at all, I am sorry. Tell me what the symptoms were leading up to this?
      Report
    • Posted

      I had backache which was very painful when walk my legs the pain was unbearable. I kept going for 18 months I was waiting for my nhs appointment.I had that and a mri. This stand in doctor just said I needed back surgery. For some reason he did nothing. I was seeing a urologist at a private hospital he did not see the warning signs the bladder was ok but erratic. I ask to see a neurolight. At this private hospital. He said it was becoming urgent he would send the mri scans to kings hospital. The same week I was seeing my gp to see if he could hurry the nhs hospital. The day I see him I was in alot of pain and my left legs was numb. He notice I was in pain he examined me. He then rang kings they said I at to got to my local hospital he gave me a letter to take.I went wait nearly 5 hours to be told by a doctor he thought I was cue jumping he was not the middle man and he was not admitting me. We left over that weekend I put a letter to my gp. On the Monday he called me I got another letter he was angry with the nhs hospital. I was finally admitted by a doctor who was at a desk for over a hour on the Friday I ask her why she did not examine me she said she was off duty at 9pm I said I was in the bay near the desk I said she was their from 7pm doing nothing. She was very sorry lol. Even after I was admitted I was left. I peed my self 4 times as that was out of my control. On the Tuesday at 5.15px I had another mri. I was in bed then at 1pm I was taken by 2 ambulance men off the ward and to kings they had seen the mri scans that were sent o c er to them. By 5.30 am I was in theatre s having urgent surgery. I was told after a load of neurological test s I would have mobility issues bowel and bladder outcome was not good. I had was a mess. I took action against the nhs hospital. How I was left. To long. Also the urology doctor. Nearly 5 years had passed and my lawyers had book the courts the nhs offered a settlement I turn down the amounts till the figure were right. I have used the money for a house that is ok for me it was easy to change. For me the rest is history I still get all types of pain numb Ness. Right leg is now my weak side it goes died with out warn. I have been in hospital with 2 bad falls if I was admitted on Friday 1st of August 2008 and operated on within 48 hours I would have had a lot less problems. I was left till 5.30pm wednesday the 6th. I have established Cauda equine syndrome.
      Report
    • Posted

      I am ok 1 more last operation to come. Then that's it I hope. It's only a repair on my colostomy stoma. The surgeon is please with my progress after my operation 8 weeks ago. How are u. X
      Report
    • Posted

      That's great Keith you will be relieved no more operations wonderful... Glad your doing ok .. Goodness is that 8weeks already .. I'm ok thank you...saw my consultant last week he was very pleased at me walking ๐Ÿ˜Š.. Got my driving license back finally so that's helping me get out a lot more xxx
      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up