This is my life....this must be what hell is like is what iv come to relize.....lose your worth and feel like a waste of space is spot on.....it so hard
I’ve been wheelchair bound for 16 years as a result of CES. Had a massive delay on 2nd surgery that led to permanent damage. Continence remains by far the worst issue though. I have a SP catheter and use a daily irrigation system Peristeen for the bowels. On lots of medications for spasms in my legs, bowel and bladder. Life is considerably more challenging but I remain positive and make the most of my abilities. Edit: Had emergency surgery in 2021 for a central disc prolapse on a different level. 8 months later had my 4th spinal surgery on the same disc. Ended up with a big hole in my back as the stitches didn’t knit the skin back together. Was told there was nothing they could do about it as it wasn’t actually leaking fluid now. It just looks like a sort of huge black gap and I’ve got used to it.
My mum has had CES since 2000 when I was a baby. I feel really bad because sometimes I forget what she’s going through, I can’t imagine what it must be like to always be in pain. People around us think she’s just a slow walker but they don’t realise she has this condition. I wish there was more awareness for it :(
Bless you for at least acknowledging your mums struggles..I have a manchild who thinks it as real as the tooth fairy🙄😁 maybe I should have had a daughter..all the best to you and your mum.
I was diagnosed in April 2019. First back surgery was Feb 2019. CES happened 2 months later when my back went again. It was 3 days after that when I went numb from the waist down (Friday night). I only knew what CES was from my own Google research so I instantly knew what it was straight away. I went to hospital after ringing an ambulance but when I was there they tried to send me home with meds. I was persistent and said no. Finally gave me a bed and after an urgent MRI in the morning I was diagnosed with severe CES and was operated on, on Sunday morning. My back was opened up and was also infected from the previous operation so I was in for 5 days to clear that up as well as recovery from more disc removal. I was very lucky but only down to knowing what CES was. It's taken 5 years to get to a stage where I'm almost recovered. I still get a stiff back easily so have to keep mobile daily, walking and monthly massages and I have no feeling in part of my thigh and also have slightly numb toes but everything else is functioning. My heart goes out to all suffering and having to live wlth CES. You're stronger than you think and very brave. More awareness about CES is desperately needed.
@@jonbaylis2203@jonbaylis2203 Jon, I highly recommend you get a DDPY subscription for this. (Yoga by a WWE wrestler) It changed my life. I no longer use a walking stick, leg spint and no more falls, and I am off all prescribed meds. I have also managed to lose 90 pounds (or 6 stones in the UK). I was lucky to have found a great surgeon over here in the USA after the NHS nearly ruined my life, and moving here to the USA was the best thing I could have done. As I said, check out DDPY because I started the program from my bed and now I do it daily, along with elliptical machine. The guy in this video (me) is now a new person, and I was grateful to have found this charity when it was operating in the UK. I hope you manage to find some peace and pain-free days, my friend, because CES is an absolute bitch that no one understands unless you're one of the 0.001% of back injuries.
This made me cry. It was the first time I had heard people describe what I was feeling. I cannot have surgery as they say I will not survive it due to comorbidities. The pain is so terrible. I care about my fellow sufferers so very much. Thank you for this video.
Hi. I'm Chris in the video, and I am glad to hear that you related to what we are saying. I hope you're recovering from the pain and suffering. Best wishes to you.
It’s good to hear from others with this. I’ve been putting up with this sort of pain for 6 years now. I feel usuals because I can not do what I used to be able to. I’m over the never ending pain.
I wanted to share with you about happened to me. In 1986 I had a compression fracture of my back from the last T disk to the S-1and had compound fracture of my right femur while serving in the US Army, I was medivac to the states where I had 4 reconstructive surgeries and after the 4th surgery I was pretty much able to live a relatively normal life with incidents of back troubles that no muscle relaxers and otc pain management. I spent almost 1 1/2 years during the surgeries on morphine and other narcotics. I stating all this to let you know I had some experience with real pain. In 1997 I had major back issues once again and doctors which treated conservatively because of my previous surgeries, which sounded reasonable so they gave me a nerve root block that worked for about but the problem came back and this is where gates of living hell started. The doctor messed up inserted the root block directly into my spine cord which pooled at base of my spine. I used minimum pain killers during this period but I could not read a sheet of paper and remember what I just read. The pain was to great. I found a doctor who said that I would be off becoming a legal drug addict with some quality of life than to suffer the way I was She prescribed me durgestic patches and 120 oxytocin per month live for almost 14 years. I pray for any one has who has this horrible ordeal.
I've had er doctors treat me like I'm drug seeking and when you see doctors they never even had a patient with it before so when you explain the pain you can tell they don't understand you.
"in pain, but not dying" so true. Living with this condition for over 10 years now, ive often thought that death would be relief. When others dont believe you, its salt in the wound. 💔
I have suffered since i was 17 and i am now 52 and my life had been hell!!! The NHS didn't tell me...i saw the same specialist from the NHS as i did privately and he told me i had CES symptoms...to this day i am still fighting the get it treated on the NHS...The neurology Department at the NHNN Queens square tell me its migraine(i am not mad)...The best neurology hospital in Europe!!!...I don't get help cos i apparently don't void my bladder or bowels and go to A&E!!! Yet i've had bowel and bladder issues all my life! They refuse to give me anymore nerve blocks...Can't tell you how uncomfortable my sexual function is, my poo gets stuck, my bladder constantly leaks, im dizzy, nauseated!!!! God help me end this crazy nightmare. 🙏🏼...And im an atheist 😞
Eight plus years into this nightmare now. This presentation touches on one of the worst aspects. People I encounter, even those closest to me simply don't understand. As a formerly active, fit person, people just assume I can do whatever. It's all mentally and emotionally very hard. And I haven't found help resources for the areas of my greatest need.
This was very moving to watch. My heart breaks for people suffering from this awful condition. Thank you to the people who took part in this video for bravely sharing their stories. I hope life is better for you now.
Thank you. I'm Chris (in the video) after moving to the USA and getting proper real care I now don't use a walking stick, no leg splint and no further falls. I do yoga daily (DDPY) and am much happier and healthier. Thank you for taking the time to watch and hear our stories.
@@abhinavheya6289 Thank you so much. I'm doing much better now and no longer use a walking stick and do regular exercise. CES wrecked my life in so many ways, pain, finances, family, debt, etc. etc. etc. Unless you have this, you have no idea what it feels like.
@@ChrisIowa actually that's a good signs that nerve control is back 😁, actually I too got cauda equina like symptoms due to heavy weight lifting and I got admitted in a hospital the very next day, they did an emergency MRI which didn't show extreme nerve compression just a minor disc bulge at l4-5 and l5-s1 levels and said it's not a surgical emergency. Also my symptoms went away after a day's rest and administration of IV fluids and anti inflammatory drugs. I was discharged from the hospital in three days. But but after getting discharged, that very same day at night my bladder became incontinet once again and the same extreme lethargy in legs reappeared which forced me to admit to the hospital once again. This time they told me to get an NCV test done which I did. It showed I had diffused lumbar plexopathy and some multiple nerves were affected. The symptoms went away after I was once again given the anti inflammatory medicines in vitro and I stayed in the hospital for about 4 days more, but still surgical interference was not considered seeing that my symptoms were going away. Now it's been 23 days since that last episode and my bladder is in control but sometimes I do feel pain in my calf after walking and some pins and needles (rarely). Saddle anaesthesia did happen one day but it resolved the very next day. I don't know what should I do next? Because I am afraid seeing the symptoms... I don't want them reappearing again and again causing nerve irritation.
Hi sir, I wanted to tell you what happened to me and how I had the experience of CES first-hand: Actually while training in the gym and due to a compromising posture, I felt something pop up in my back. Then after walking back straight home I felt the bladder releasing everything on its own as soon as I sat on the pot and my legs started shaking, some sort of seizures i guess... I then lay down on my couch, straight, asked my friends to massage the back to get some temporary relief (which I certainly got). Certainly I had no idea at that time that there was something seriously wrong and I was walking continuously during that period. At night I went to a medical store with my friend where they gave me Cobalmin and a multi vitamin tablet. I also went to a hospital at night (around 11 pm) where the night duty doctor said I had a serious neurological deficit and i should immediately go and see a neuro ortho specialist. Since it was too late to go anywhere, i just went back home and slept after eating the tablets. Also I applied some rheumatic oil on my back because it was paining a lot. Next morning I was okayish and the pain had resided to an extent that I didn't feel like something was wrong. However I did a mistake, I once again started walking and then those symptoms, the saddle anaesthesia and the bladder incontinence and the weakness in legs came back. It was haunting and yes I did do my research the night when I came back from the hospital and the first thing that came up on the internet was CES. I then made up my mind that it was a medical emergency and i should immediately go to the hospital which I did. It was 4 p.m. when I got admitted and told them what I was going through. They did an emergency MRI and I was shifted to a cabin where I was administered IV fluids (especially paracetamol three times a day) and other pain killers and vitamins. My MRI report came but to my surprise, there was no severe compression of the nerve roots or the cauda equina as it is. The doctor said it was a minor disc bulge at l4-5 and l5-s1 vertebral levels and I need not think too much about surgical intervention. There was no need of surgery even though I faced CES like symptoms! Okay I said as I was not informed much. Then I started to improve slowly and my bladder came back in control within two days, also I was able to slowly walk. Still I was afraid because I didn't want to mess my back so I avoided walking except for when I had to poop or pee. Things were improving and I was discharged within three days. The day I was discharged I went to my home with my dad but then I started walking again though slowly but still. Also the gap in medication had become very long. I didn't eat any medicine after getting discharged for around 14 15 hours. And all this led to my symptoms coming back again at night. I would drink water and within 15 minutes I would have the urge to pee. This happened like three times in a row. And also my legs started to become weak and out of control. This forced me to get admitted to the very same hospital again 😢 at night around 1 a.m. They inserted a catheter in my bladder and gosh it was 😖 painful. And I was shifted to the same room from where I was discharged in the morning. God plays dice. So now I was given one dose of corticosteroid (dexona) and pain killers which I had to swallow. Also, I got a Nerve Control Velocity test done during my admission period. The results were obvious: diffused lumbar plexopathy which meant there were multiple nerves roots getting affected because I had some kind of bilateral sciatica and weakness in both legs confirming that it was a central disc bulge. The catheter was removed in three days after I got my bladder control back in place. Going to the toilet with that catheter was so annoying, I had to hold onto it whenever I would go to the loo and any movement would bother the bladder 😔 😕 All this went on for 4 days and i was once again okay to go back home. I guess the disc bulge was not too significant and whenever the inflammation went away, the CES like symptoms also went away. Yes the saddle anaesthesia which I experienced during these two episodes healed and i got my sensations back which was a positive sign! I am now 28 days post my second discharge and i didn't face the bladder and bowel incontinence but one day while twisting my back I felt a snap in my back which brought back some Symptoms like the saddle anaesthesia (not too much but still sensitive) and weakness in legs. This time it was not very much. So after eating medicine it improved the very next day. But I am still scared, how and why on earth am i getting these Symptoms and I am afraid if it doesn't appear again. What is the course of action I should take and what exercises should I do to put that central disc bulge which is compressing my thecal sac and irritating multiple nerves roots back in place? Should I go for surgery despite knowing that the mri doesn't show something serious? I don't have nerve injuries or whatsoever cause I am able to walk slowly and steadily and things are under control but this irrational fear is still there in my head. 😢 Since you have been through worse, I want to get in touch with you.... If we can talk somewhere else other than UA-cam it would be great! Hoping to get a response @@ChrisIowa
Damn I think I need a new doctor. I’ve been on narcotics 10+ years told I have spinal stenosis but I’ve been having issues with the loo for about 2 years. Now that I’ve heard all your stories I’m making a new appointment! Thx so much for your stories
I had CES for 12 years now I went from being paralyzed to incompletely to moving closer to 85% now I have no pain. But my nerves were completely crushed. I had to force my bladder and bowels into they work normal. I'm more positive now.
hello how are you, I have the same problem , I mean I had L1 compressed and the nerves of cuada equina was compressed , that come from the car accident 3 days after the car accident the surgery was made , now it have been 4 weeks after the surgery , I can walk , I'm a little numb at my feet and pelvic area, but I can't urinate, I have a cathether for about 4 weeks , can't feel the sensation to urinate or go to the bathroom , did you have the same problems ? waiting for the answer, thank you and good bless you
@@user-ey9rb2oh2h I’m doing very well now! I still have an occasional weird numbness in like, one random toe, or a small patch on one of my thighs or calf randomly, but I’m otherwise recovering so much better than I expected. Those first several months were depressing and chaotic in terms of what my future looked like. I’m very mobile now, lifting weights 3xs per week and walking/stationary bike no less than 3xs a week. I’m 36 weeks post op tomorrow 🎉. The only thing I think I’ll never be able to do again is running because of the impact on my spine. I never liked running anyway haha. I am still tender at the surgical site though. The healing from tissue/muscle being deeply cut through and damaged during the surgery alone is quite long.
Don't we wish everyone understood that very little pressure or weight put on us blows our legs off!! The pain immediately is unreal from picking up anything we would have never even considered to have weight.
Is a throbbing tail bone that doesn’t stop throbbing, along with sciatica and weird numb flares in your calves symptoms of this, like upon standing it’s like a hot flush/pins and needles in your calf muscles that make your lower legs almost give out? My lumbar area is pretty messed up. Not much disc left anywhere.
is it possible for early CES symptoms to come and go? I keep getting a lot of pain and pins and needles below my coccyx between my buttocks and between my legs come and go and ... I know from an mri I had a few years ago I have L5-S1 central herniated disk. I saw GP and they said because I don't have incontinence I shouldn't worry and just take painkillers.
CES isn't necessarily a herniated disc- it's when you have compression on the spinal cord and will often give you bladder or bowel, sexual dysfunction, or complete loss of sensation in your anal region.
I am 78 years old A recent MRI showed that I had CE S. When my GP gave me the results. I explained that my symptoms have come and gone multiple times for the last 15 years When I have bouts of pain in my lower back and left leg, which is extremely painful. The only relief I can get is to bend over forward and walk like a monkey, If I try to walk upright, the pain is too much. I sometimes go for months pain-free , then suffer days of excruciating pain. The longest I have had pain is a 3 week period. I have lived with this for so long, I just except it .
My surgeon told me that I’m not a woman anymore and no one will ever love me or touch me again but it’s not a big deal since I can still go shopping. It’s incredibly lonely and terrifying to live with CES alone.
@@Smokillo I can’t feel my privates at all. He was saying that no man would want to be with someone who can’t be sexually responsive. He implied that I would have to lie and fake it and if the man found out, he would immediately throw me out and maybe even beat me for it. I learned the hard way that he was right and I’ve accepted that I’ll always be alone. It’s been 8 years living with ces and I’m used to the loneliness.
Sorry to hear this. There is no way your surgeon should have spoken to you like that . He should have been reported for unprofessional conduct. Ofcourse when you are at your lowest ebb it's hard to find the energy to complain.
I had an artificial disk put in my spine! The procedure is called arthroplasty and it has changed my life forever. I can run for miles and dance and have almost perfect bowel control. Rehab was though tough. I encourage you to talk about it with your doctor. :) :) :)
I've had CES for 10 years now. A physiotherapist caused the damage, shattering three vertebrae from L3 to S1 and because it was through Workers Compensation they didn't want to believe they did this to me so for 47 days with a completely different part of my back messed up than the original muscle strain in the center of my back and causing so much pain I could barely stand wasn't til' the incontinence became unbearable that I was put in for emergent surgery. But the damage was already done. No other surgery can be done, no disc replacement or fusion because the damage that was done left nothing to fuse to or to be able to put pins in there's nothing left that's stable. They've taken away my life like the older people above, even conceiving a child is out of the question because the pressure of the baby on my spine would cause paralysis from the waist down at the very least they've told me. I wouldn't wish this on my worst enemy either, I wonder every day if life is worth this. The pills I take for the pain are causing a whole other set of issues including my stomach and liver. I have a hard time wondering what the point is.....I took care of palliative seniors, I was good at some things, loved climbing to the tops of mountains, horse back riding, even swimming or the simple things like putting on a pair of heels and going out dancing...all of that is gone now....the depression is so bad I've spent weeks at a time in bed, Can't stand to look in the mirror, know the person I was and what I am now, This isn't me...
I`m the same my sister....I`ve been robbed of life too...my CES was in June 2016 just back into the community after 3 months in a spinal rehab unit. Finding it hard to adjust my beauts
This sounds like what pain I have all these things got a l4-5 herniated disc with sctactia been doctor’s numerous times on list for surgery massive wait in constant pain makes me wonder been a+e as well said will get symptoms as if it nothing good video
I was turned away by one accident unit , by the time I went the 2nd accident unit 10 days later my legs wasn’t working properly they got a spinal surgeon scan me and operated there and then
Sorry, Darlene...there is no easy "fix".....or any other fix other than the spinal decompression surgery. I had it in Dec 2005 after about 2 weeks of symptoms. And I have been living in help ever since. Grateful that I can walk, but the pain and misery of CES is not something I'd wish on anyone, not even my worst enemy. Except maybe those that are making it nearly impossible to obtain pain meds legitimately in FL. If the people in charge were to have CES, they'd never stop legitimate pain patients from having their medicine again!!
So the majority of these people who were NOT operated on time suffered because the medical profession was not hyper vigilant about what I would imagine they should be immediately recognising as red flags.. Have they forgotten that's WHY they ask even on a regular back complaint, if there's any numbness or bladder changes?? Heartbreaking stuff for something that could have been rectified so quickly.
Hi. I am Chris (in the video) I had 8 weeks of this crap until I had an MRI. I was in surgery within 30 minutes of the MRI and was screwed over by the NHS. Thankfully I have since moved to the USA and received proper (but very expensive) care, which I ma now able to walk with no stick or leg splint and do yoga on a daily basis. The NHS is a cluster f*ck and is responsible for all of our suffering due to the gov policies.
I have ces since 2009 lost everything thru so hard to deal with still now. I have PTSD thru it the pain is unreal all the time feel so angry all the time from being able to do anything and everything to now being able to do nothing is life robbing I hate everything its done to me and how its made my life so shit makes me just want to curl up and fade away I was never told anything about it when it happened to me the non stop pain the can't sit to long the can't stand to long the non stop can't get comfy my right leg sometimes is like a lump of meat. this has ruined my life so much
Also research Chaga Mushroom, it's an amazing healing mushroom. the best in the world. please read extensively about it. it's gods gift here for healing
7 weeks 7 doctor visits!! Wrong with just from a major hospital saying there's nothing that you can do nothing no one can do I will not do surgery on you. 5 weeks after that a precious doctor from the same hospital immediately when seeing my MRI takes me in for surgery!!
+Silvio Novaković yeah, I can walk, though not as fast as before. I'm part of a facebook group for people with ces. The facebook page is called: Cauda Equina Syndrome with Down to Earth Realism. And another page that I'm in is called: The Cauda Equina Syndrome Association. It's great being able to talk to other people with CES.
that sucks...keep going, strengthen your legs. It takes about a year to recover from the surgery for many people...and then years more to recover some nerve function, muscle tone...you just have to persevere. Join the facebook groups, and you'll hear advice and experiences from lots of people who have CES as well.
I have not had adiagnosis yet but am waiting for a lumber sacral MRI cauda Equina syndrome is most likely am quite old I have studied this subject a lot and the concequences of being paralyzed and l don't like that l would rather die to be truthful........
I think this is what i am going through right now, been going on for a year, although not yet dignose with tgis condition as waiting for a spinal specialist, but on my Mri it say at L5- S1 so i looked it up blow on behold it comes up with CES, im in alot of pain, my mobility comes and goes, i find i cannot sit up i have to lay down, im fighting with dwp as they are saying im fit for work but this is ongoing, they dont care about tge pain im in they dont take that into considering, i am speaking to my dr next week and im going to mention CES to her, I struggle to get in and out of the bath, getting dressed and putting my shoes and socks on, i csnt pick things up that are heavy
CES is more a sudden onset thing..the problem of course is you have all the preceding symptoms but until shit actually hits the fan, and you lose your bladder control or go numb in ur saddle area etc, nothing will be done. It's a really crappy situation to be in, like a ticking time bomb. Did you get any help from when you posted?
@@grancanyon2878 hi yes i got a dignose which was a prolaps disc and compression in 3 places, however tge top compression got better so therefore it wasnt CES but im one level away of being that
@@sarahsmith-iq6fn The upside of that (we gotta be positive right lol) is that you KNOW now, exactly what to look out for, and what to do if you even suspect CES. 90% of cases I've seen, lost so many functions and mobility etc, simply cause they didn't know what to look for and didn't know to SCREAM from the high heavens to be taken seriously in their need for URGENT treatment. YOU KNOW this already, so you're miles ahead of most of us 😁 I hope u never get to that point but if you do, you know to raise hell ..All the very best to you lovely.Edit..I also had several prolapse discs (4 in my case) before I got it, so ..I'm so happy ur super vigilant and aware xx
This is all I have for a life! I say I'm struggling just to exist! Exist for what though? A life of pain and loss of who you were? I've had an MRI over two years ago and the only thing Drs have said is "its really bad. You have DDD, cervical spinal stenosis with mylopathy, slipped disks, and some bone spurs." No mention of several cal sac intrusions in cervical and thoracic, no mention of lumbar retrotheliosis, etc. Cant get a referral to a neurosurgeon. I feel they are just going to let me die with this and fibromyalgia. My opinion of doctors has changed dramatically! Gov medical is a sick joke that patients are played the joke on! Still I continue...
I'm so sorry you're suffering so much..I had 2 years of the most excruciating pain I just wanted to die..day and night, mo escape from just screaming pain..its not living is it when you're like that. Unfortunately/Fortunately it took getting cauda equina to actually get to see a neurosurgeon and get operated on. I feel awful hearing the stories of people that are left with all the complications it brings with it. In my case it was a blessing in disguise as I'd never have gotten to the root of all my pain. I'll gladly take the bladder issues and residual loss of feeling over the pain any day. It's so wrong to leave people with no will to carry on..
@@Smokillo ER will never do anything for back/spinal issues.. I used to go there screaming in pain begging for help. Each time they'd send me packing with a 3 day prescription for diazepam and a letter for my gp. Round n round it went. It would have been easier if I had grown a second head or an extra leg..if it's not visible, it doesn't exist even to medical staff.
I just want to cry. This is me. My love to all those who suffer too.
Its such a good feeling to know we are not alone with everyday struggle. Thank you everyone involved in making this video.
I have Cauda is there a group?
Thanks, I am Chris in the video with my wife Maggie. I hope you're keeping safe and well.
This is my life....this must be what hell is like is what iv come to relize.....lose your worth and feel like a waste of space is spot on.....it so hard
No body has the answers. And you feel isolated.
I’ve been wheelchair bound for 16 years as a result of CES. Had a massive delay on 2nd surgery that led to permanent damage. Continence remains by far the worst issue though. I have a SP catheter and use a daily irrigation system Peristeen for the bowels. On lots of medications for spasms in my legs, bowel and bladder. Life is considerably more challenging but I remain positive and make the most of my abilities.
Edit: Had emergency surgery in 2021 for a central disc prolapse on a different level. 8 months later had my 4th spinal surgery on the same disc. Ended up with a big hole in my back as the stitches didn’t knit the skin back together. Was told there was nothing they could do about it as it wasn’t actually leaking fluid now. It just looks like a sort of huge black gap and I’ve got used to it.
This is me also.
My mum has had CES since 2000 when I was a baby. I feel really bad because sometimes I forget what she’s going through, I can’t imagine what it must be like to always be in pain. People around us think she’s just a slow walker but they don’t realise she has this condition. I wish there was more awareness for it :(
Bless you for at least acknowledging your mums struggles..I have a manchild who thinks it as real as the tooth fairy🙄😁 maybe I should have had a daughter..all the best to you and your mum.
As the mom of a little girl, my heart aches to hear this. It’s all she’s ever known. I wonder how it will scar her. I grieve my expectations as a mum
Saddle paresthesiefeeling hard to walk, bùttock tò thigh paìn, numbness tingling, hot feeling down tò toes.
I was diagnosed in April 2019. First back surgery was Feb 2019. CES happened 2 months later when my back went again. It was 3 days after that when I went numb from the waist down (Friday night).
I only knew what CES was from my own Google research so I instantly knew what it was straight away. I went to hospital after ringing an ambulance but when I was there they tried to send me home with meds. I was persistent and said no. Finally gave me a bed and after an urgent MRI in the morning I was diagnosed with severe CES and was operated on, on Sunday morning. My back was opened up and was also infected from the previous operation so I was in for 5 days to clear that up as well as recovery from more disc removal.
I was very lucky but only down to knowing what CES was. It's taken 5 years to get to a stage where I'm almost recovered. I still get a stiff back easily so have to keep mobile daily, walking and monthly massages and I have no feeling in part of my thigh and also have slightly numb toes but everything else is functioning.
My heart goes out to all suffering and having to live wlth CES. You're stronger than you think and very brave. More awareness about CES is desperately needed.
Thanks, Jon. I am Cris in the video. I hope that you're getting on a little better now and that life is a little easier for you.
Hello im glad you are feeling better surgery they removed the whole disk or just the part that got out
@@baraastash15Two operations. Both times 20-25% of the disc removed. Still stiffen up easily when sat still for an hour.
@@ChrisIowaThanks. Hope you're well. I'm OK but stiffen up quickly if I sit for 45-60 mins without walking around.
@@jonbaylis2203@jonbaylis2203 Jon, I highly recommend you get a DDPY subscription for this. (Yoga by a WWE wrestler) It changed my life. I no longer use a walking stick, leg spint and no more falls, and I am off all prescribed meds. I have also managed to lose 90 pounds (or 6 stones in the UK). I was lucky to have found a great surgeon over here in the USA after the NHS nearly ruined my life, and moving here to the USA was the best thing I could have done. As I said, check out DDPY because I started the program from my bed and now I do it daily, along with elliptical machine. The guy in this video (me) is now a new person, and I was grateful to have found this charity when it was operating in the UK. I hope you manage to find some peace and pain-free days, my friend, because CES is an absolute bitch that no one understands unless you're one of the 0.001% of back injuries.
Thank you to everyone involved in making this video, as a suffer you helped me to understand a bit more about what I'm going through.
This made me cry. It was the first time I had heard people describe what I was feeling. I cannot have surgery as they say I will not survive it due to comorbidities. The pain is so terrible. I care about my fellow sufferers so very much. Thank you for this video.
How are you now sir
Hi. I'm Chris in the video, and I am glad to hear that you related to what we are saying. I hope you're recovering from the pain and suffering. Best wishes to you.
It’s good to hear from others with this. I’ve been putting up with this sort of pain for 6 years now. I feel usuals because I can not do what I used to be able to. I’m over the never ending pain.
I wanted to share with you about happened to me. In 1986 I had a compression fracture of my back from the last T disk to the S-1and had compound fracture of my right femur while serving in the US Army, I was medivac to the states where I had 4 reconstructive surgeries and after the 4th surgery I was pretty much able to live a relatively normal life with incidents of back troubles that no muscle relaxers and otc pain management. I spent almost 1 1/2 years during the surgeries on morphine and other narcotics. I stating all this to let you know I had some experience with real pain. In 1997 I had major back issues once again and doctors which treated conservatively because of my previous surgeries, which sounded reasonable so they gave me a nerve root block that worked for about but the problem came back and this is where gates of living hell started. The doctor messed up inserted the root block directly into my spine cord which pooled at base of my spine. I used minimum pain killers during this period but I could not read a sheet of paper and remember what I just read. The pain was to great. I found a doctor who said that I would be off becoming a legal drug addict with some quality of life than to suffer the way I was She prescribed me durgestic patches and 120 oxytocin per month live for almost 14 years. I pray for any one has who has this horrible ordeal.
So sorry.
I like how people look at me like I'm exaggerating.
I've had er doctors treat me like I'm drug seeking and when you see doctors they never even had a patient with it before so when you explain the pain you can tell they don't understand you.
@@teddy9333 them saying that’s normal is abnormal
Good video, been living with CES for over 8 years now
"in pain, but not dying" so true. Living with this condition for over 10 years now, ive often thought that death would be relief. When others dont believe you, its salt in the wound. 💔
The thought of bone cancer crossed my mind several times before I was diagnosed a week ago.
I have suffered since i was 17 and i am now 52 and my life had been hell!!! The NHS didn't tell me...i saw the same specialist from the NHS as i did privately and he told me i had CES symptoms...to this day i am still fighting the get it treated on the NHS...The neurology Department at the NHNN Queens square tell me its migraine(i am not mad)...The best neurology hospital in Europe!!!...I don't get help cos i apparently don't void my bladder or bowels and go to A&E!!! Yet i've had bowel and bladder issues all my life! They refuse to give me anymore nerve blocks...Can't tell you how uncomfortable my sexual function is, my poo gets stuck, my bladder constantly leaks, im dizzy, nauseated!!!! God help me end this crazy nightmare. 🙏🏼...And im an atheist 😞
Eight plus years into this nightmare now. This presentation touches on one of the worst aspects. People I encounter, even those closest to me simply don't understand. As a formerly active, fit person, people just assume I can do whatever. It's all mentally and emotionally very hard. And I haven't found help resources for the areas of my greatest need.
How did it happen ?
@@Smokillo A botched surgery.
@@chrislegner4816 I'm so sorry about that. :(
@@Smokillo Thanks. Still trying to find better solutions.
@@chrislegner4816 I hope they compensated you..I know I know, nothing could, but I at least hope you were financially taken care of.
Diagnosed in 2006 . August 19 .
Took a long time to get answers and further assistance.
Nightmare problems.
This was very moving to watch. My heart breaks for people suffering from this awful condition. Thank you to the people who took part in this video for bravely sharing their stories. I hope life is better for you now.
Thank you. I'm Chris (in the video) after moving to the USA and getting proper real care I now don't use a walking stick, no leg splint and no further falls. I do yoga daily (DDPY) and am much happier and healthier. Thank you for taking the time to watch and hear our stories.
@@ChrisIowasir I pray to god that you recover fully and completely, I have some Symptoms not as bad as all these people but I know how bad it is 😢😢 😭
@@abhinavheya6289 Thank you so much. I'm doing much better now and no longer use a walking stick and do regular exercise. CES wrecked my life in so many ways, pain, finances, family, debt, etc. etc. etc. Unless you have this, you have no idea what it feels like.
@@ChrisIowa actually that's a good signs that nerve control is back 😁, actually I too got cauda equina like symptoms due to heavy weight lifting and I got admitted in a hospital the very next day, they did an emergency MRI which didn't show extreme nerve compression just a minor disc bulge at l4-5 and l5-s1 levels and said it's not a surgical emergency. Also my symptoms went away after a day's rest and administration of IV fluids and anti inflammatory drugs. I was discharged from the hospital in three days. But but after getting discharged, that very same day at night my bladder became incontinet once again and the same extreme lethargy in legs reappeared which forced me to admit to the hospital once again. This time they told me to get an NCV test done which I did. It showed I had diffused lumbar plexopathy and some multiple nerves were affected. The symptoms went away after I was once again given the anti inflammatory medicines in vitro and I stayed in the hospital for about 4 days more, but still surgical interference was not considered seeing that my symptoms were going away. Now it's been 23 days since that last episode and my bladder is in control but sometimes I do feel pain in my calf after walking and some pins and needles (rarely). Saddle anaesthesia did happen one day but it resolved the very next day. I don't know what should I do next? Because I am afraid seeing the symptoms... I don't want them reappearing again and again causing nerve irritation.
Hi sir, I wanted to tell you what happened to me and how I had the experience of CES first-hand:
Actually while training in the gym and due to a compromising posture, I felt something pop up in my back. Then after walking back straight home I felt the bladder releasing everything on its own as soon as I sat on the pot and my legs started shaking, some sort of seizures i guess...
I then lay down on my couch, straight, asked my friends to massage the back to get some temporary relief (which I certainly got). Certainly I had no idea at that time that there was something seriously wrong and I was walking continuously during that period. At night I went to a medical store with my friend where they gave me Cobalmin and a multi vitamin tablet. I also went to a hospital at night (around 11 pm) where the night duty doctor said I had a serious neurological deficit and i should immediately go and see a neuro ortho specialist. Since it was too late to go anywhere, i just went back home and slept after eating the tablets. Also I applied some rheumatic oil on my back because it was paining a lot. Next morning I was okayish and the pain had resided to an extent that I didn't feel like something was wrong. However I did a mistake, I once again started walking and then those symptoms, the saddle anaesthesia and the bladder incontinence and the weakness in legs came back. It was haunting and yes I did do my research the night when I came back from the hospital and the first thing that came up on the internet was CES. I then made up my mind that it was a medical emergency and i should immediately go to the hospital which I did. It was 4 p.m. when I got admitted and told them what I was going through. They did an emergency MRI and I was shifted to a cabin where I was administered IV fluids (especially paracetamol three times a day) and other pain killers and vitamins. My MRI report came but to my surprise, there was no severe compression of the nerve roots or the cauda equina as it is. The doctor said it was a minor disc bulge at l4-5 and l5-s1 vertebral levels and I need not think too much about surgical intervention. There was no need of surgery even though I faced CES like symptoms! Okay I said as I was not informed much. Then I started to improve slowly and my bladder came back in control within two days, also I was able to slowly walk. Still I was afraid because I didn't want to mess my back so I avoided walking except for when I had to poop or pee. Things were improving and I was discharged within three days. The day I was discharged I went to my home with my dad but then I started walking again though slowly but still. Also the gap in medication had become very long. I didn't eat any medicine after getting discharged for around 14 15 hours. And all this led to my symptoms coming back again at night. I would drink water and within 15 minutes I would have the urge to pee. This happened like three times in a row. And also my legs started to become weak and out of control. This forced me to get admitted to the very same hospital again 😢 at night around 1 a.m. They inserted a catheter in my bladder and gosh it was 😖 painful. And I was shifted to the same room from where I was discharged in the morning. God plays dice.
So now I was given one dose of corticosteroid (dexona) and pain killers which I had to swallow. Also, I got a Nerve Control Velocity test done during my admission period. The results were obvious: diffused lumbar plexopathy which meant there were multiple nerves roots getting affected because I had some kind of bilateral sciatica and weakness in both legs confirming that it was a central disc bulge. The catheter was removed in three days after I got my bladder control back in place. Going to the toilet with that catheter was so annoying, I had to hold onto it whenever I would go to the loo and any movement would bother the bladder 😔 😕 All this went on for 4 days and i was once again okay to go back home. I guess the disc bulge was not too significant and whenever the inflammation went away, the CES like symptoms also went away. Yes the saddle anaesthesia which I experienced during these two episodes healed and i got my sensations back which was a positive sign! I am now 28 days post my second discharge and i didn't face the bladder and bowel incontinence but one day while twisting my back I felt a snap in my back which brought back some Symptoms like the saddle anaesthesia (not too much but still sensitive) and weakness in legs. This time it was not very much. So after eating medicine it improved the very next day. But I am still scared, how and why on earth am i getting these Symptoms and I am afraid if it doesn't appear again. What is the course of action I should take and what exercises should I do to put that central disc bulge which is compressing my thecal sac and irritating multiple nerves roots back in place? Should I go for surgery despite knowing that the mri doesn't show something serious? I don't have nerve injuries or whatsoever cause I am able to walk slowly and steadily and things are under control but this irrational fear is still there in my head. 😢
Since you have been through worse, I want to get in touch with you.... If we can talk somewhere else other than UA-cam it would be great! Hoping to get a response
@@ChrisIowa
Damn I think I need a new doctor. I’ve been on narcotics 10+ years told I have spinal stenosis but I’ve been having issues with the loo for about 2 years. Now that I’ve heard all your stories I’m making a new appointment! Thx so much for your stories
How did you get on?
I had CES for 12 years now I went from being paralyzed to incompletely to moving closer to 85% now I have no pain. But my nerves were completely crushed. I had to force my bladder and bowels into they work normal. I'm more positive now.
hello how are you, I have the same problem , I mean I had L1 compressed and the nerves of cuada equina was compressed , that come from the car accident 3 days after the car accident the surgery was made , now it have been 4 weeks after the surgery , I can walk , I'm a little numb at my feet and pelvic area, but I can't urinate, I have a cathether for about 4 weeks , can't feel the sensation to urinate or go to the bathroom , did you have the same problems ? waiting for the answer, thank you and good bless you
@@Ndoka009did you ever regain any sensation? I’m 6 weeks post op today, same situation from herniated disc.
@@Gina-Montana
how are you now?
@@user-ey9rb2oh2h I’m doing very well now! I still have an occasional weird numbness in like, one random toe, or a small patch on one of my thighs or calf randomly, but I’m otherwise recovering so much better than I expected. Those first several months were depressing and chaotic in terms of what my future looked like. I’m very mobile now, lifting weights 3xs per week and walking/stationary bike no less than 3xs a week. I’m 36 weeks post op tomorrow 🎉. The only thing I think I’ll never be able to do again is running because of the impact on my spine. I never liked running anyway haha. I am still tender at the surgical site though. The healing from tissue/muscle being deeply cut through and damaged during the surgery alone is quite long.
Don't we wish everyone understood that very little pressure or weight put on us blows our legs off!! The pain immediately is unreal from picking up anything we would have never even considered to have weight.
Yep, I feel like a weakling now ..cant even carry the shopping.
Is a throbbing tail bone that doesn’t stop throbbing, along with sciatica and weird numb flares in your calves symptoms of this, like upon standing it’s like a hot flush/pins and needles in your calf muscles that make your lower legs almost give out? My lumbar area is pretty messed up. Not much disc left anywhere.
is it possible for early CES symptoms to come and go? I keep getting a lot of pain and pins and needles below my coccyx between my buttocks and between my legs come and go and ... I know from an mri I had a few years ago I have L5-S1 central herniated disk. I saw GP and they said because I don't have incontinence I shouldn't worry and just take painkillers.
CES isn't necessarily a herniated disc- it's when you have compression on the spinal cord and will often give you bladder or bowel, sexual dysfunction, or complete loss of sensation in your anal region.
I am 78 years old A recent MRI showed that I had CE S.
When my GP gave me the results.
I explained that my symptoms have come and gone multiple times for the last 15
years
When I have bouts of pain in my lower back and left leg, which is extremely painful.
The only relief I can get is to bend over forward and walk like a monkey, If I try to walk upright, the pain is too much.
I sometimes go for months pain-free , then suffer days of excruciating pain.
The longest I have had pain is a 3 week period.
I have lived with this for so long, I just except it .
how common is this for adults who were born with spina bifida occulta?
My surgeon told me that I’m not a woman anymore and no one will ever love me or touch me again but it’s not a big deal since I can still go shopping. It’s incredibly lonely and terrifying to live with CES alone.
Why would he say that ?
@@Smokillo I can’t feel my privates at all. He was saying that no man would want to be with someone who can’t be sexually responsive. He implied that I would have to lie and fake it and if the man found out, he would immediately throw me out and maybe even beat me for it. I learned the hard way that he was right and I’ve accepted that I’ll always be alone. It’s been 8 years living with ces and I’m used to the loneliness.
@@piros44 I understand. I wish you all the best.
@@piros44 it was kinda rude and unprofessional for the surgeon to talk to you like that..
Sorry to hear this. There is no way your surgeon should have spoken to you like that . He should have been reported for unprofessional conduct. Ofcourse when you are at your lowest ebb it's hard to find the energy to complain.
THERE'S GOT TO BE A WAY TO FIX THIS PROBLEM THIS JUST BREAKS MY HEART, DID ANYONE GET A DISK PUT BACK IN OR COULD THEY DO THIS? AND FIX THE NERVE!
I'm on my 4th back surgery and 2nd fusion nothing can be done for it.
Once you have established CES it’s sadly too late.
I had an artificial disk put in my spine! The procedure is called arthroplasty and it has changed my life forever. I can run for miles and dance and have almost perfect bowel control. Rehab was though tough. I encourage you to talk about it with your doctor. :) :) :)
I've had CES for 10 years now. A physiotherapist caused the damage, shattering three vertebrae from L3 to S1 and because it was through Workers Compensation they didn't want to believe they did this to me so for 47 days with a completely different part of my back messed up than the original muscle strain in the center of my back and causing so much pain I could barely stand wasn't til' the incontinence became unbearable that I was put in for emergent surgery. But the damage was already done. No other surgery can be done, no disc replacement or fusion because the damage that was done left nothing to fuse to or to be able to put pins in there's nothing left that's stable. They've taken away my life like the older people above, even conceiving a child is out of the question because the pressure of the baby on my spine would cause paralysis from the waist down at the very least they've told me. I wouldn't wish this on my worst enemy either, I wonder every day if life is worth this. The pills I take for the pain are causing a whole other set of issues including my stomach and liver. I have a hard time wondering what the point is.....I took care of palliative seniors, I was good at some things, loved climbing to the tops of mountains, horse back riding, even swimming or the simple things like putting on a pair of heels and going out dancing...all of that is gone now....the depression is so bad I've spent weeks at a time in bed, Can't stand to look in the mirror, know the person I was and what I am now, This isn't me...
I`m the same my sister....I`ve been robbed of life too...my CES was in June 2016 just back into the community after 3 months in a spinal rehab unit. Finding it hard to adjust my beauts
@@neiluk78 hey can you tell me more about symptoms
This sounds like what pain I have all these things got a l4-5 herniated disc with sctactia been doctor’s numerous times on list for surgery massive wait in constant pain makes me wonder been a+e as well said will get symptoms as if it nothing good video
I was turned away by one accident unit , by the time I went the 2nd accident unit 10 days later my legs wasn’t working properly they got a spinal surgeon scan me and operated there and then
Sorry, Darlene...there is no easy "fix".....or any other fix other than the spinal decompression surgery. I had it in Dec 2005 after about 2 weeks of symptoms. And I have been living in help ever since. Grateful that I can walk, but the pain and misery of CES is not something I'd wish on anyone, not even my worst enemy. Except maybe those that are making it nearly impossible to obtain pain meds legitimately in FL. If the people in charge were to have CES, they'd never stop legitimate pain patients from having their medicine again!!
So the majority of these people who were NOT operated on time suffered because the medical profession was not hyper vigilant about what I would imagine they should be immediately recognising as red flags.. Have they forgotten that's WHY they ask even on a regular back complaint, if there's any numbness or bladder changes?? Heartbreaking stuff for something that could have been rectified so quickly.
Hi. I am Chris (in the video) I had 8 weeks of this crap until I had an MRI. I was in surgery within 30 minutes of the MRI and was screwed over by the NHS. Thankfully I have since moved to the USA and received proper (but very expensive) care, which I ma now able to walk with no stick or leg splint and do yoga on a daily basis. The NHS is a cluster f*ck and is responsible for all of our suffering due to the gov policies.
I have ces since 2009 lost everything thru so hard to deal with still now. I have PTSD thru it the pain is unreal all the time feel so angry all the time from being able to do anything and everything to now being able to do nothing is life robbing I hate everything its done to me and how its made my life so shit makes me just want to curl up and fade away I was never told anything about it when it happened to me the non stop pain the can't sit to long the can't stand to long the non stop can't get comfy my right leg sometimes is like a lump of meat. this has ruined my life so much
have things improved? I truly hope so :/
Also research Chaga Mushroom, it's an amazing healing mushroom. the best in the world. please read extensively about it. it's gods gift here for healing
Did you ever get surgery? I'm so sorry for what you go through i know exactly what you're describing. CES can make one feel so alone.
7 weeks 7 doctor visits!! Wrong with just from a major hospital saying there's nothing that you can do nothing no one can do I will not do surgery on you. 5 weeks after that a precious doctor from the same hospital immediately when seeing my MRI takes me in for surgery!!
great video. I've had CES for 9 years now.
+Man WithSword Do you walk? I have CES too.
+Silvio Novaković yeah, I can walk, though not as fast as before. I'm part of a facebook group for people with ces. The facebook page is called: Cauda Equina Syndrome with Down to Earth Realism. And another page that I'm in is called: The Cauda Equina Syndrome Association. It's great being able to talk to other people with CES.
i suffer of CES since sept 2014. walking hardly by crutches.
that sucks...keep going, strengthen your legs. It takes about a year to recover from the surgery for many people...and then years more to recover some nerve function, muscle tone...you just have to persevere. Join the facebook groups, and you'll hear advice and experiences from lots of people who have CES as well.
Thanks. i try to move as best as i can, but can not walk much (just to the bathroom).
Please reply I’ve never met anyone else with my condition
I was in the video Tina.
Same here.
I have not had adiagnosis yet but am waiting for a lumber sacral MRI cauda Equina syndrome is most likely am quite old I have studied this subject a lot and the concequences of being paralyzed and l don't like that l would rather die to be truthful........
So what happened ?
I think this is what i am going through right now, been going on for a year, although not yet dignose with tgis condition as waiting for a spinal specialist, but on my Mri it say at L5- S1 so i looked it up blow on behold it comes up with CES, im in alot of pain, my mobility comes and goes, i find i cannot sit up i have to lay down, im fighting with dwp as they are saying im fit for work but this is ongoing, they dont care about tge pain im in they dont take that into considering, i am speaking to my dr next week and im going to mention CES to her, I struggle to get in and out of the bath, getting dressed and putting my shoes and socks on, i csnt pick things up that are heavy
CES is more a sudden onset thing..the problem of course is you have all the preceding symptoms but until shit actually hits the fan, and you lose your bladder control or go numb in ur saddle area etc, nothing will be done. It's a really crappy situation to be in, like a ticking time bomb. Did you get any help from when you posted?
@@grancanyon2878 hi yes i got a dignose which was a prolaps disc and compression in 3 places, however tge top compression got better so therefore it wasnt CES but im one level away of being that
@@sarahsmith-iq6fn The upside of that (we gotta be positive right lol) is that you KNOW now, exactly what to look out for, and what to do if you even suspect CES. 90% of cases I've seen, lost so many functions and mobility etc, simply cause they didn't know what to look for and didn't know to SCREAM from the high heavens to be taken seriously in their need for URGENT treatment. YOU KNOW this already, so you're miles ahead of most of us 😁 I hope u never get to that point but if you do, you know to raise hell ..All the very best to you lovely.Edit..I also had several prolapse discs (4 in my case) before I got it, so ..I'm so happy ur super vigilant and aware xx
@@grancanyon2878 Thank you for you message i certainly will , lets hope i dont get to that stage like you said x
@@sarahsmith-iq6fn How are you now?
CES has robbed me of life, in every aspect
Sadly it does this, but no one understands.
Do you lose your bowels and urine I can’t hold mine for 7 years my L5S1 burst backwards severed my nerves
I have same issue too recently started.
Do you have leg pain or back pain . Sciatica pinch?
@@samippudke no love
@@tinacollins9213 can you explain u case ❤️
@@samippudke I can’t hold my bowels or bladder I cough and my bowels go
This is all I have for a life! I say I'm struggling just to exist! Exist for what though? A life of pain and loss of who you were? I've had an MRI over two years ago and the only thing Drs have said is "its really bad. You have DDD, cervical spinal stenosis with mylopathy, slipped disks, and some bone spurs." No mention of several cal sac intrusions in cervical and thoracic, no mention of lumbar retrotheliosis, etc. Cant get a referral to a neurosurgeon. I feel they are just going to let me die with this and fibromyalgia. My opinion of doctors has changed dramatically! Gov medical is a sick joke that patients are played the joke on! Still I continue...
Go to the ER
I'm so sorry you're suffering so much..I had 2 years of the most excruciating pain I just wanted to die..day and night, mo escape from just screaming pain..its not living is it when you're like that. Unfortunately/Fortunately it took getting cauda equina to actually get to see a neurosurgeon and get operated on. I feel awful hearing the stories of people that are left with all the complications it brings with it. In my case it was a blessing in disguise as I'd never have gotten to the root of all my pain. I'll gladly take the bladder issues and residual loss of feeling over the pain any day. It's so wrong to leave people with no will to carry on..
@@Smokillo ER will never do anything for back/spinal issues.. I used to go there screaming in pain begging for help. Each time they'd send me packing with a 3 day prescription for diazepam and a letter for my gp. Round n round it went. It would have been easier if I had grown a second head or an extra leg..if it's not visible, it doesn't exist even to medical staff.
@@grancanyon2878 Are you in the UK and talking about the NHS? The system is broken.
Iv had ces for 24 years and the pain is horrendous I'm crying now I walk normal and even family and friends don't understand
CES for over 27 years. Now I been diagnosed with Heart failure. It sucks dying from CES.
Ces is caisung heart failure?
Please explain?
I Had last week the operation. I'm still not feeling 100% physically or mental... 😢
How are you felling now?
I was diagnosed this morning. I'm pretty scared
Why were you not in surgery immediately? This is an emergency. I hope alls well. ps I am in this video (Chris)
@ChrisIowa ya update. My physicians assistant didn't have all the correct information. I have pressed nerves. Getting help thanks
Don’t let you husband go you can please your husband in other ways
No he doesn't, he needs to love you and help you.