learning to walk all over again after CES

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

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 🌸🌸

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

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.

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