Cauda Equina Syndrome UK Charity support those affected by this often devastating spinal injury. CES is caused when the Cauda Equina Nerves at the bottom of the spine become compressed and damaged, often a disc prolapse or trauma. We also try to raise awareness of the condition among the public and also within the health care profession in order to minimise the number of late or missed diagnosis and to improve care pathways.
On this channel you will find videos from a patient perspective as well as from medical and legal professionals.
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My surgeon left bone fragments, had to have a second surgery a week later. No accountability.
Physician's assistant committed an illegal/unauthorized digital rectal assault behind closed curtain inside hospital ER; pending MRI study/dx to confirm CES. This was reported promptly as an unwitnessed assault, without my consent; that is somehow omitted from my medical records. Zip, zero, zilch!! Fighting for accountability.
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
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
"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 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 .
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 KZread it would be great! Hoping to get a response @@ChrisIowa
Great point, I have ignored simptoms for near to 36hrs, then Googled simptoms a bit, got scared shitless after realizing what I might have and what are possible long term consequences. Went to the local emergency doctor who quickly sent me to the proper emergency hospital and had MRI within next 12hrs and was in surgery within next 6 hours. All in all, just over 48hrs from onset of first symptoms, but knowing I could still (barely) urinate myself and empty my bladder I suppose I was still CESI, but it was becoming worse and worse. If I recognized early symptoms I would have probably had surgery within 12 hours from early symptoms with less damage. Now it's wait and see recovery time, all of this happened less than 2 weeks ago.
Must be nice having an ER that good’ 3 visits for me 1 month after initial visit they finally did MRI They saw how bad it was on scan and surgeon says worst he’s ever seen in his career … yet get this Tells me if I want to try to go to work I can’ 1 week after MRI we did surgery’ His report even said I had CES massive l5-s1 herniation I didn’t have insurance I know that’s the reason’ Now 2 surgeries later and I need a 3rd now have severe stenosis and Forman stenosis Left leg and foot still numb major sensory/ balance issues constant pain I can make it an hour before I have to lay down as pain gets so bad’ burned my entire life savings prolly will never be able to go back to my job And that hospital and surgeon could care less’ I had to find the 2nd surgeon because 1st one wouldn’t see me since I didn’t have insurance’ Hope the best for your recovery man’ I wish my outlook was good but it’s far from
CES for over 27 years. Now I been diagnosed with Heart failure. It sucks dying from CES.
Ces is caisung heart failure?
CES has robbed me of life, in every aspect
Sadly it does this, but no one understands.
How do i get help to end my 35 year hell with CES ?. Cos the NHS have abandoned me and sent me to hell...
I know how u feel
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 😞
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.
The thought of bone cancer crossed my mind several times before I was diagnosed a week ago.
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
I am also cauda equina syndromes my surgery done at 09/02/2022
How about the result
@@alkalineforlife9033 mujhe abhi bhi urine incontinence aur bowel problem hai
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.
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?
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!!
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.
No he doesn't, he needs to love you and help you.
Same here.
I have CES not dignose as of yet but my mri shows At L5-S1, i looked it up what it meant and blow on behold this came up, the pain is tremoudus, im not having any help, im a big lady but thats beside the point, ive not being going out im stuck at home, i cannot belive that the drs have not picked this up i can relate to everyone the video i watched with these people im crying
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?
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.
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.
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
What happens when your surgeons operatering standards are inadequate which causes your CES.
Do what I did and sue for malpractice
@@jrich972Have you settled it, or what?
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.
Comprehensive presentation. Bravo!
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 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 ?
After surgery, are you perminateley paralized?
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.
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.
Don’t let you husband go you can please your husband in other ways
Please reply I’ve never met anyone else with my condition
I was in the video Tina.
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
I got it due to A FAILED BACK SURGERY A MICRODISCECTOMY 2010 . I HAVE NO FEELING IN SADDLE REGION . THAT DOCTOR- BUTCHERED ME THAT DAY - HE - UNMANNED ME I HAVE CHRONIC KIDNEY DISEASE DUE TO SELF CAPHATERISATION . THE WORST THING IS THE PAIN OF WALKING , I CAN NOT WALK MORE THAN 15 MINS ON THE LEVEL , I GO SHOPPING FOR BASICS I CANT PUSH THROUGH THE PAIN. AND I M SWEATING LIKE CRAZY FROM THE PAIN . AND I M ON FENTANYL PAIN MEDICATIONS, AND CODINE MEDICATIONS AND ANTIBIOTICS EVERY MONTH FOR UTI INFECTIONS ARE HORRIBLE THEN IT TRAVELS IN TO THE KIDNEYS AND IT WEARS YOU DO TO NOTHING
I just want to cry. This is me. My love to all those who suffer too.
Diagnosed in 2006 . August 19 . Took a long time to get answers and further assistance. Nightmare problems.
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
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.
Is this charity still up and running in the UK ???
I wish we had a support group in the USA. Living with this is hell and I often can’t get out of my recliner. I hate what has been done to my life and would give any thing to be able to go for a walk or just put in a small garden. Thank you for the videos. You are a god send from across the pond
Thank you for posting this!!! I’ve been supporting a family member with CES, I’m also a medical professional. I’ve had to fight the system, HARD!, go privately, & be VERY proactive. My family member would have been dead had I not walked the past 2 years alongside them. Good luck! Your life IS valuable!
Cauda equina can come on slowly. I have microscopic blood in my urine that's worse after a year, one leg used to go out, now either one will give way, I'm Shakey going down stairs, heavy going up feet feel detached, left leg goes numb, right goes numb sometimes, and I have weakness defecating and either no urgency to urinate when I'm full and urgency when I'm not. I have L4-L5 Central broad based disc protrusion with moderate stenosis. My urologist is on top of my spine Dr. Hopefully I'll get this taken care of soon before I lose all feeling.
Hey how are you now?? did you recover fully??
@@sarcasticmeeeeee5499 never but I'm not worried about my back because my neck is what scares me. I was damaged from an accident. I'll sure tell you. I am way more appreciative of what I do have but I also have PTSD I'm scared about the neck thing. On a lighter note my first name is sarcasm. Check out my KZread Mr adventure and my new boyfriend. Look under my name. I don't really do anything on KZread but if you like sarcasm let's laugh instead.😘😁 not like I'm trying to get people watching it. I think it has a couple views but you have my REAL name🤘
@@sarcasticmeeeeee5499so I did get better but still issues. I think the neck is causing it though
@@mssatire14 hello ma'am what were the symptoms you been suffering
It's 2019 and I am a complete idiopathic CES patient. No back injury, best guess among the doctors was a virus. I became ill in 2014. This is a very depressing presentation, but a very important one. I will never be able to work again, and I severely struggle with finding any point in being alive yo be honest. Anywsy, good luck to all who find this💗
Boa noite sou portuguesa ,fui operada ha um ano duas vezes síndrome de cauda equina ,sinto me perdida pois não conheço apoio em Portugal para esta condição será que sabem se ha em Portugal alguma instituição que ajude e Oriente quem sofre desse síndrome?
olá. Ana. Também fui operada de emergência com essa síndrome cauda equina e novamente vou reoperar para colocar protese na região lombar. vc teve duas síndromes?
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