learning to walk all over again after CES

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Good evening everyone on this amazing site.  So gald I found it. My back went out after getting up out of bed. I layed on the floor for three hours and every time I moved my lower back hurt. So I called my mom, talked to her for a while,had lunch on the floor. As long as I didn't move, I was OK. Finally decided to call the ambulance. They wanted to pick me up as the our house did not allow them to bring the streatcher in our bedroom. I asked them to drag me out on a sheet and then  down the stairs on the streatcher ? They said no. They picked me up to sit me on a chair with wheels on it. I felt my back going into the most pain I had ever felt. I almost passed out. Then they put me in a different chair that went down stairs. Then was moved to the stretcher. Was given morphine for pain. At the ER the surgeon knew I had CES and needed imeadiate surgery. I was left with not feeling from waist down. Spent 6 wks in rehibiliation hospital. I am now home continueing to learn how to walk.  I am worried that I will hit a plateau and not regain my ability to walk with out a walker. Does anyone have a history of learning how to walk again after CES ? I would appreciate any response, the good along with the bad. I feel I'm doing good, just want to know how others faired and delt with CES. Blessings 

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  • Posted

    Hi Mary,

    My story is very similar to yours where it happened out of the blue and I couldn't feel nothing from the waist down or move anything. My injury happened on the 30th November 2016. Luckily like you the A&E doctor recognised the symptoms. I was ambulanced to the closest spinal surgery specialist hospital and had surgery the next day.

    Within 4 days I was moved to a spinal rehab unit, which was by far the best possible option for me. I was bid ridden for the first two weeks after surgery due to sorting bladder and bowel management, but once sorted I started hydrotherapy with the physio team. Initially I could barely stand and had no movement in my feet or calves and had to hold on to something as I had no balance whatsoever, even in the water.

    It been about 8 weeks now since my injury and I can now walk in the pool unaided very well and on ground with a stick, having recently upgraded from crutches, having been using a walker before that, and am still improving every day.

    I have my balance back but still struggle for long distances, and will continue to push my self striving to get back to something like I was was.

    The key for me was stretching and strengthening at the same time of hoping for some recovery. It's hard work and very painful at first to get those muscles stretched, and then start to build on that.

    I was quite fit before my injury and am 34 so I think this also has had a positive impact, and I know others aren't as lucky with the level of recovery.

    All I can say is push your self to your limits and through the stretching pains and try to do at least and hour of physio in the pool each day and also strengthen your core and buttock muscles as it's these muscles that propel you forward when walking, this has played a massive role in my recovery.

    Sit to stands are also very good, as these strengthen the muscles you use to walk. I could only do about 5 6 weeks ago. I can now to 70 Non stop, and manage another 40 after a rest.

    I was about to start my morning excerises when I received the email notification of your post I thought I'd try and give hope. I owe a lot to the physio team working with me due to their knowledge and understanding, so listen to your rehab team and do everything they ask.

    Stay positive and don't let a few hours go by when you aren't working on something. It's all very small and slow steps of progress, but they all add up to something.

    Adam

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    • Posted

      Thank you so much for your response and support. Mine happened on Nov 25 2016, very close to your date of injury. 

      You are so right about the exrcising of muscles and staying active. I am not working now, but hope to go back to doing a desk job till I can walk and do my own job. My employer has been so supportive and is keeping my job open and giving me a temp job till I get back into shape and able to walk again.  I keep in mind what I'm working for, which is my family and my job. I have an eleven year old daughter who loves to go water sking and plays sports. I want to be there for her and my wife who has been my world these past months. 

      I use my walker around the house, doing laundry, dishes, and other things on the list my wife leave for me. I am able to figure out how to do the things I used to do, like taking a shower. Was difficult getting in and out by myself, but now can do it easy.  I am able to drive, so I pick up my daugher after school. I am just learning patience, but I feel I'm doing very well for where I was. Could only move my toe on my right foot. No feeling from waist down. Boy, how I am progressing. Just writing this is helping me to see my own progress. I will continue to work each day. I know you will do the same. I continue to do physical therapy daily on my own and in a pool with my PT. I think we can do this. Blessings. Will keep in touch

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  • Posted

    Hi,

    Thanks for sharing your story. I have not experienced losing ability to walk but was on the way to this with slow onset CES so have some small understanding of what it can mean mentally to face your body doing that. You sound strong and tenacous with your goal, so I am sure this will serve you well in the months and years of changing to come.

    While it is easy for me to say this as someone that did not experience fully losing walking, please if you can, don't worry or fixate on progress or about a platue. It may also feel like two steps forward one step back with progress, spasms and unpredictable body stuff. Right now even an expert doctor can't tell you what the body will do. It might be only you can know yourself what is changing over time, it seems so little is known of CES and recovery. I hope you can be hopeful and find the best way to be now in your body. I have had some of my best information from reading of lived experiences on this forum not from medical sites. Another forum 'apparelysed' also has some stories of people supporting eachother while recovering mobility.

    I do understand with CES the nerves can be the slowest of many things in body to heal and regrow so if it is a 2 year recovery you are maybe in such early days? After the surgery too, at this early stage would your body not still be in recovery stage? If you had a laminectomy then the ligaments and so on in back are just starting to settle as I understand it from my own experiences. I have found even now (2 years plus) I have to keep gently moving (day and night) to reduce pain and reduce stuff like leg giving way.

    I have had to slowly gather information, medication, health professionals and make modifications around me to help get back to the things I love to do in my life. This has been daunting at first and is an ongoing process now, but makes all the difference. Do you have some pain management team in place and some physical therapists you trust that know you?

    I also do the mindfulness therapy to help seeing my body as still able to heal and get a break from the often unremmiting nerve pain and bladder and bowel troubles and the anxieties all this can make in trying to resume things in life. Getting the support I need has been a matter of seeking out help and seeing what works for me & getting rid of the things (including my own attitudes) that are not so helpful.

    I agree this is a wonderful site for information. It helped me accept I had CES and follow up with surgery to halt it progressing at that time. Hopefully you will get more responses with people that have more closly travelled your journey with the more severe type. I am answerring as I want you to know it is early days from what I have experienced, even with milder CES.

    Please update us with your progress too. Very best of luck in your recovery and getting as much mobility for a future with post CES surgery body. Take Care 🌸🌸

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    • Posted

      Thank you so much for sharing your story. We all have an uphill battle going on, so this site is so encouraging. You mentioned pain, I amazingly don't have to much pain. the bottom of my feet hurt from time to time, but not enough to take any pain medicine. I have not had to take pain meds from the last few wks at the rehibilation hospital. I have very little back pain. I guess I am very blessed in that respect.

      .  I again thank you for  taking time out to support me. I hope I can do the same for any other person who joins us on this wonderful site. Blessings

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    • Posted

      Thank you so much for your support and sharing your struggles. I see myself improving everyday. Just went to see my surgeon and he called the other doctors into his office and said, "This is the young man I told you about, he's a miracle, a real miracle." He was so happy for me as he had been praying for me. My drop foot is getting better and I walk more fluently with a walker. I go to my friends house to visit so I get out. I can drive to so that is wonderful to beable to go places by myself. I pick my daughter up from school each day. So many people have been praying for me. God is good to me. Anyway, thanks again for your response and support. I'll keep you updated. I hope you continue to progress each day and your days get more enjoyable for you. Blessings

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  • Posted

    I went in to complete compression of the spine. I was left for 6 days I was sent home from ae. They decide to scan me on the Tuesday evening then I went back to the ward at 1am I was taken from my bed by a emergency ambulance crew rush to a Neroumod surgery hospital straight on to the operating table. So after a long stay in hospital I had no feeling in my right leg. I got my self up no help from hospital I was was told my mobility would get worse. And I will lose the feeling to wee or poo. They were right I had a colostomy 1st then I had a permanent ileal conduit uromstoma stoma so I the got a sepitic bladder that was removed. The I had to bad hernias they were done. Then I had a colostomy revision. 7 major operation. I that time I had 2 fells the 2nd down a full flight of stairs landing on my bump that put me in hospital on my back for 2 months. I at to learn to was again they got me out of bed by a hoist. I have another urgent mir scan next Tuesday my back as problems top to bottom the don't know what to do. Anyway try and make hitting the floor get a walking stick or crutches get ur self up. I often have my right leg goes died in have foot drop my left leg is the strong but it get intense pins and needles I can't feel my middle air . I sued and won 1.1 million pound I would give it all back for my health I have in 8 years spent 2 years in hospital. U must keep trying I do. I am the worst case of cauda equine syndrome in the UK. It's as devastated my I lost my job I do get pensions which help I spent a lot on get the right house and it converted. I was 50 when it happen I am 59. I have a 2 Week assessment in March to see if I can be put forward to have Neroumodulation. They put a disc and battery's that break up the pain signals to the brain. Any thing even if it help a little bit it would help I have morphine twice a day progablin notripiline plus many more to help with the pain I am in. Don't give up use things that will help keep u up right. That my story and advice keep try keith

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    • Posted

      You, my friend, have been to hell and back on your journey with CES. I know you are right, no amount of money can give you your old life back. I was so fortunate to have the surgeon  I did, who knew what I had. I received surgery about 6 hours after my disc blew thru my spine. He put in a new disc. I will have to have it fused at a later date. For right now I am focused on going back to work at the end of Feb with just my walker. My balance still needs much work.

      Thank you so much for sharing your story with me. I do appreciate it more then you can ever know. Blessings

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    • Posted

      Told you I'd let you know when I catch up to you. I'm not quit there yet but I'm gaining. I can now stand for five minutes with out any aid. I am walking short distances with a walker with four wheels on it. I continue to walk short distances and hope to lengthen my walks. But I'm so thankful that I can now stand and walk with walker even for short times and distances. Blessings.

       

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  • Posted

    Hopefully by now you are walking without your walker. At least you had rehab. My experience was way different. I had back surgery because of spinal stenosis which caused pain when ever I walked. I woke up from surgery basically paralyzed from the waist down. I had bottom numbness, and had to be 3 days in bed, no explanation (later found out that he had torn the covering around the spinal cord). My hemoglobin was 14 prior to surgery and was 7 afterward. I could not even think. After 3 days they took out my catheter, and I could not void at first, then eventually could, but used my stomach muscles to do so . Physical therapy had me stand at side of bed and I could only stand on my left heel, no feeling in my front of both feet and my left leg was useless, could not bear weight.7 days after my surgery, I was sent home because my insurance would not cover Rehab(it won't when the surgeon and physical therapy LIE and say that you are walking well around the unit) With a walker I could balance on my right heel and move forward a few feet.I was discharged unable to walk or stand unassisted and could not urinate or have a bowel movement 7 days after my surgery with a hemoglobin of 7 ( at a 6 hemoglobin your organs shut down). It took me from Feb until July before I was able to walk with 2 canes, the walker was a problem getting places. 12 months later a wonderful surgeon( Dr. Herkowitz of Beaumont in Detroit, MI ), did surgery to try to fix my back. He released several nerves that the first surgeon caused to be pinched and diagnosed me with cauda equina syndrome caused by the first surgery. Most of my constant pain went away, other things improved but today, 7 years later, my calf muscles remain totally paralyzed and cannot push off or stand on my toes so walk poorly. I still have weakness in my pelvis when I walk( Trendelenberg walk but using 2 canes and now forearm crutches stabilizes my pelvis) I still urinate using my stomach muscles and strain like hell to have a BM. All of my leg muscles are weaker and some do not work at all, but at least I am not in a wheel chair. I tried to sue the lying pric surgeon that did this to me but in Michigan , the trick is getting a lawyer willing to take your case. Since everyone involved in my first surgery lied on the records, I could not sue. Not a day goes by that I do not wish a boatload of Karma on that lying ass.If he would have sent me to another surgeon immediately after my surgery, it could have been corrected and my paralysis would have gone away. I have discovered in the years since that first surgery that there is no place to go for help, you are on your own. The internet has been the most help to me. many of my issues I have solved using the internet. I use Vitamin C 1 gram 8 times a day to prevent urinary tract infection, a lot safer than taking an antibiotic forever which my doctor wanted me to do.I have learned to be my own doctor and make a point of going to the doctor only yearly as the medical profession is a joke and all about making money. No one understand CES, The medical schools are just teaching people to push prescriptions and treatments that are at best useless. I hope that you have been able to figure out a physical program that helps you. I tried to get my doctor to send me somewhere to help me improve but got referred to a doctor that was only into pushing pain meds, you know the pain specialists. Actually, 2 glasses of wine work better and are not constipating.Sorry for the rant, but spouting off does help. I do hope that your situation is way better than mine.

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  • Posted

    Hey all so I was diagnosed with ces on Feb 26 th of 18 I was having leg pain for months was told sciatica and it was just getting worse to the point I had like an aching feeling in the back of my leg then on the 25th had so much pain in both legs shooting pain felt like Charlie horse in calf couldn't even stand any more..my wife took me to the hospital and around 7pm i began feeling numbness in my genitals and my butt and I lost control of my urine so I was admitted the next morning I had an MRI around 7am at 1030am I was told I had ces and unless I wanted to live the rest of my life in wheelchair and diaper I had to have it done so 1230 I was in surgery..so my Dr said everything went very well so I'm still numb 5 days out..I can walk but I can't pee on my own yet but I'm hoping soon the Dr said he can't give me a 100 percent that I'll get it all back but he said we did the surgery quick after the numbness started they are confident I I will recover well so I'm just here hoping abd trying to keep positive..this is a terrible syndrome I hope everyone that gets this recovers well

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    • Posted

      Roys please reply! How are you now? Because im aslo having same symptoms after surgery like yours!

      Please reply im scared! Its been a month and im still on catheter. I can walk but with the help of walker. I'm not able to feel my bowel movement. Im not having pain in any area. My foots are still numb. My surgeon and orthopaedic Doc says like it will take time. So i want to know how are you??

      I started gaining strength in my foot and legs thats the only plus point.

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    • Posted

      Hey Trevor so I'm now 4 months since surgery I still have saddle anesthesia but it's not as bad as it was the worst place is my ass o feel like I have a wedgie all the time but it is improvingimproving..it does take z long time ago it's all about patience..biggest thing is walk walk walk as much as you can I was on walker then cane I had catheter 2 weeks I returned to work on June 4th and outs going well and as I type this I'm getting ready to leave on a cruise for a week..I still have some bowel problems constipation and stuff but I'm learning how to deal with it...also have sexual dysfunction but using Viagra..again can't stress enough the importance of being yourself moving around I had surgery in dead winter I walked in freezing cold..snow didn't matter I made sure asst least 2 times a day around the block...I'm still doing pt 2 days a week.when I'm done it will be a total of 20 weeks but it's worth it..good luck to you you got this

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    • Posted

      Thanks for reply mate! I'm happy for you that you are improving day by day. My biggest concern is how im gonna manage my work and my bowel. I don't feel bowel happening, but when i put pressure they come. Sometimes while walking also i don't feel them and they automatically drop. My hips abductors are weak so walker is a must for now. I'm doing pt 2 times a day. And catheter is also a big concern. 1 and half week ago my urologist removed my Catheter and i can pee but with stomach muscle. So after 4-5 hours i started getting pain in my bladder and again they put me on catheter 😭. My foots are numb but i can move my thumbs and fingers a little bit. I'm still scared and confused. They operated me on 8th of june.

      One more thing , yesterday night i felt something weird a huge wve of current running in my foot!

      I'M CONFUSED !

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    • Posted

      Hi Trevor, it’s still very early for you. I’m at least 19month post op and am still getting areas of recovery. Hopefully somethings will come back in time. It took me two months to be able to walk with a stick, and now my walking is that’s good people cant even tell I had an injury. I feel very lucky. Bowel management is different for everyone, and diet etc plays apart, but again it’s still very early and hopefully things will settle. Unfortunately it looks like I won’t recover in that sense, but I manage it and still can live my life.  So no matter how far your recover goes, you’ll be able to live and socialise. 

      I hope your recovery goes well.  Keep the PT going. The current is your nerves firing back up, it can be painful but from my experience its generally something good. Especially around your big toe, it’s surprising how many nerves pass through the area and connect with other regions. 

      Good luck

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    • Posted

      Hey adam thanks for your reply. You are 19th month post operation WOW! You feel good now ? Like before? Can you pass urine easily?

      Im still scared whether im going to be alright or will remain same.

      I also started getting feeling in penis. Now whenever i think that someone is going to pull my Catheter out i immediately get pain feeling in that area and this is happening everytime whenever i think. It's started 3-4 days ago. Idk whether im getting my urine sense back or not.

      My foots are still numb! It feel like im wearing a plaster. My walking/standing balance is also very poor.

      😢😢

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    • Posted

      Hey..time is the key my feet are numb in areas as well I have bowel problems still but you learn to live and Deal with it im sorry to say just like me you may never get everything back the way it was totally but with time and hard work you will be able to return to your life and will learn to adjust to your new self I know that's not what you want to hear..as far as catheter when it comes out what I did at first I didn't really feel when I had to go so I timed on my phone every 2 hours..I have to push to pee but it gets easier I'm wearing incontinence pads because I leak a little but hoping to be of of them eventually it all takes time and like I said walk allot get the strength back in your legs...anything else I can help with just ask

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    • Posted

      I’m a lot better than I thought I would be. I never thought I would walk again and know exactly what you’re going through. Also no injury is the same, so different people recover in different ways and have more recovery in some areas than others.  But the one thing I’ve learnt is that you can manage everything to live your life, it’s hard and you have to make some serious changes. In these situations you just have to manage with what you have and hope things improve. Hard words I know, but it’s what finally helped me to move forward from the low state of mind I was in. I stopped feeling sorry for myself (I had many nights thinking why me etc) and kept pushing my self with everything i did, hoping that things would improve. Just keep strong and keep up with your PT, do something every 2/3 hours, from stretching, sit to stands (with a frame), trying to walk, even in the evenings. 

      For me maybe after 5 weeks, the improvements started to come more rapidly, before that the improvements were very small and I couldn’t stand let alone walk. I left hospital after 2 months and had a month off before going back to work with a walking stick. Luckily I’ve been able to have further recovery but I still have numbness in my feet, legs and groin, but I can walk now quite well.  I was using intermittent catheters after a few weeks in hospital, and it took nearly 6 months before I could urinate, I didn’t have much happening before then, but then it all of a sudden came back and I was then just using a catheter once a day, and now probably once every few days to just double check I’m empty. I honestly thought it wouldn’t come back, but this just shows that your nerves can take a while to recover. 

      I must stress its still very early for you. Put everything you have in to your PT, and keep strong. 

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