My daughter's father had that. He was paralyzed. After 8 days he died because of pulmonary embolism. I wish he would have gone to the doctor to adress his back pain he had for years.. God bless you 🙏 a miracle
Brother, your story sounds Identical to mine. I was diagnosed in 2014 and had emergency surgery. I spent a week in the hospital and a month in a rehab facility. I was also the youngest person there. It was hard being away from my wife and daughter. After the rehab facility, went home but returned twice a week for a 2 hour rehab visit and self excercises at home. I was in a wheelchair for 7 months, then graduated to a walker and then to a cane at 10 months. I started walking without a cane at a year. I use a cane when I know that I will be on uneven surfaces or will be walking long distances. My balance sucks because I am basically numb below my knees and have dropfoot on my left leg. I am now 9 years out and I haven't improved or gotten any worse other than the rogue leg pain and balance issues. I know what you went through and are going through. Hang tough and keep on keeping on. I think this is one of the worse conditions that a person can have because people look at you like what's wrong and don't understand. May God bless you Sir.
It’s truly a sadistic condition. Normally my right side is worse but the last few days my left side is out to get me. I’ve got the drunk shuffle going on and leg cramps too. It’s not a fun combination to be semi-walking and have the inside of my knee completely spazzed up.
I'm currently waiting for a follow up appointment after an initial consultation and scheduled MRI W/WO contrast. I've already been diagnosed with spinal stenosis and had a laminectomy at L3-L4 with no relief. I have 3 herniated discs and 2 bulging discs. Severe disc disease at L5-S1, fortunately no urinary incontinence but rear back pain into my saddle area. I'm praying my new neurosurgeon will take care of my issues. My advice to everyone is educate yourself as much as possible as well as advocate on your level of care. Don't let them dismiss your concerns, you owe it to yourself.
It’s always worth mentioning - multiple times to everyone that will listen during appointments and hospital visits - that you have a history of CES symptoms and want everything checked out and addressed before you leave. It’s abhorrent how much we have to advocate for our own care to the “medical professionals” but if that’s what it takes to get treatment before you’re paralyzed, then it’s worth doing.
Oh my word! Your story is just like mine. I had cauda equina in 2007, 2014 and again in 2022. I didn't realise you could have it more than once. I also couldn't believe that the doctors still didn't recognise it and still made the same mistakes, despite me pleading with them. Unfortunately, my paralysis is permanent now, and I've no bladder or bowel function. I have taken up archery, though, and can do it in my wheelchair. I hope you have had further improvements since this video.
It’s truly insane how many people have the same story and even still how many of them have to repeat it. Archery has been a great way for me to be able to focus my body on doing something that I still have control over. Some days, I just have to do it sitting down because my legs just won’t cooperate and my focus is so strong on my arms and chest that it’s like my brain forgets it still has to tell my legs what to do since they can’t do it on their own.
I was seeing an orthopedic sports medicine doctor and he put me off for years with a bulging disc at T11 T12 saying it's not that serious. I went to see a neurosurgeon and he was like WTH! this should have been taken care of a long long time ago. Ortho's are there for the money and mainly want to work on your bones and don't look at the nerves. I subbed and liked and shared because your story is important and you deserve more views more subs and more respect. God Bless you.
Thank you sir! I am continually amazed at the number of people that have similar stories of seeing a doctor that should know better and being ignored only to see a different doctor that absolutely flips out over it.
I’m in the midst of my second lumbar surgery on the opposite side. I just asked about Cauda Equina syndrome and my surgeon chuckled and pretty much said That “syndrome” was BS. I’m only 50. I have just about every symptom including the bowel/urinary and shooting pain and numbness. My MRI showed two new spinal stenosis and no discs between L3, L4, L5 and S1. The numbness and pain shooting to my feet is scary and sometimes makes my whole leg give out. Thank you so much for telling your story! I hope and pray you will continue to get better. ❤️🩹
Do yourself a favor and find a different neurosurgeon. That one is living proof that D’s get degrees and is not looking to learn or improve himself in any way.
Thank you for this in depth account and warning. I've had pain in my back, groin and down my legs for years. Having multiple episodes where I'm unable to move and won't call an ambulance because of the severity of the pain. The numbness is new and isn't constant right now, if I lay in the right position it lets up. I don't have bladder retention. When my legs and saddle region go numb, I do have to rush to the bathroom, but I can tell that I need to go. Waiting on insurance to approve an MRI.
As clear as the warning signs are, doctors will still put off any legitimate tests and treatments but make no mistake - the longer it takes before intervention, the more likely the negative effects will become permanent. They are not worth the risk.
I was diagnosed November 2022 after I got up one morning and couldn't urinate. Had surgery the next morning. It's 10 months later and I still can't urinate on my own, can't feel a bowel movement. I had a herniated disc causing the sciatic nerve pain in my left leg (surgery resolved this), but I also have an extra bone in my back compressing another bone (hence, the nerves couldn't send signals to my saddle region). Cauda Equina aint' no joke! I'm grateful for you sharing your story. I thought I was alone in this journey.
For some reason, doctors like to thump their own chest for treating “such a rare condition” but then offer absolutely ZERO help or guidance on everything else. You are absolutely not alone. There’s a couple CES groups on Facebook where folks share a lot of good info on their successes and experiences with different treatments. Keep tabs on your diet and ensure you’re getting adequate water and fiber intake. It’ll help get your bowels on a manageable schedule and reduce the chances of having an “accident”.
I do not believe I have the same syndrome, but ever since November my back has been throwing out on me. Its enough to bring me to the ground and I'm only 18. hopefully it wont develope into something worse. Good luck dude
Find a competent doctor and have them check everything out. An ounce of prevention is worth more than a pound of cure - especially considering there’s no cure for being paralyzed.
Please get an MRI, and avoid sitting in a slouching position or too long, especially avoid computer games if that’s your thing as most young people do nowadays. Again, please get an MRI of your back pain. And drink Vitamin Bcomplex ad do lots of research study on how to take care of your spine. You are SOOO young and you can have a bright future ahead of you, please help and take good care of yourself.
Thank you for sharing your story. I understand lower back pain and the years of backlash. I am so sorry that you suffered in this way. It really is unacceptable and against everything society says about physical and mental wellness. I simply have a TRUST issue now with the medical 🏥 profession when it comes to my wellbeing.
There’s an old adage about keeping lawyers and bankers at a distance but I’ve taken the stance of the old Russian proverb to trust but verify. And I understand most reviews left are negative in nature but between research, reviews and my God-given gut instinct - I have zero qualms finding a different doctor.
I cried as you're the first person that I've heard a story so similar to mine I've hardly been able to eat food for 3 years since a dude tricked me and got me hurt bad at work over a management position... I was early 20's , now late 20's... doctors are scumbags!! I've never been treated so bad as I have by "doctors and medical providers "! My lower spine is crushed up. And upper spine has injuries too... I've been telling the doctors that my spine hurts up to 9-10 pain and I scream and crap my guts out after eating, for 3 years now.... worthless scumbags dont carry the least bit and throw me out the door. When I have multiple MRI's to prove it! .... this past week I finally found the terminology for it by myself on RUclips! Cauda equina syndrome....! Not one of 10 doctors and " professionals " that I've seen ever uttered those words 😑... I cant lift 5 pounds either!! For 3 F N years.. or ride a mower etc.. ... recently I finally got a doctor to write a note for dissabilty saying " no lifting more than 5 lbs, no sitting or standing for more than 30 minutes " ... and nothing about craping his food out and starving to death for 3 years. .. I get the leg pains. .. ... use canes sometimes and roller walker sometimes .. When you got to the point in your story about the shopping in your 20's and people being BEYOND PATHETIC.. I know EXACTLY how that is.. I tried the electric cart a couple times and that's it, once I tried and the battery went bad at the back of Walmart and the scooter went to bucking!!!!😬😬😬 ahhhhhh F ing hurt me so much!! Should have sued walmart for that! Ahhmnm!! Then of course the other scooters were dead... so I'll most likely not be using those again.. and you and everyone else needs to be aware that those things can "buck"like a horse when the battery or something is wrong with them...but yeah so many people are wiered and cause problems when a young man with all 4 limbs only carys a few things in the store and doesn't push a cart... .. I just realised I gotta get a electric cart when I get my dissabilty and a rack on the back of my hopefully 73- 91 suburban..... never get a white van! People freak out about those now.
Almost every story I hear about CES has SO MANY similarities about how it happened, how doctors screwed up, and how much suffering it inflicted in every aspect of life. You’ll get labeled as a drug seeker but the truth is, there are no drugs that help. Some may mitigate a few symptoms but nothing makes nerve pain better. Do your research before visiting a doctor, take notes, and trust your gut. If your gut tells you a doctor is lying or doesn’t know what they’re talking about, you’re probably right and you need to find a new doctor. CES wasn’t even considered a legitimate diagnosis until the 1990’s so it shouldn’t be a surprise that most doctors only know what they read off a Wikipedia article.
Thank you for your story, how terrible for you and yes doctors are not all equally responsible and we are treated as a number. Hope you are doing better today and you can thrive without the big problems, Lovely daughter you have so sweet she looks. Wishing you the best and you have support from people around you as it is very hard to be hit so hard, I am watching this video as I have the same problems and know I have 2 smashed discs in L5 and S1, due to a fall from a table in January 2022, But now I'm being referred for urgent scanning hmm on November 5 what? but I don't think I'll hold out until then, because I'm getting worse and worse, both with pain, numbness and my legs failing. I have even contacted the hospital with that doctor and said I am about to capitulate. Unbelievable how we are treated, Take care dear and I will remember what you said here, Thanks,
Take notes, tell every medical provider and other staff you meet about the red flag symptoms and how long you’ve been having them. Medical schools are not teaching about this condition but it has the same prevalence as cystic fibrosis and there’s MILLIONS of dollars spent on CF research every year. We have to teach doctors what’s wrong with us and why they need to pay attention to it.
thank you for sharing your story.... it is helping people to understand this terrible thing ... i have spinal stenois cervical and lumber areas. i am much older than you are tho...i am so sorry for all this has happened... i really hope your family is well and you are doing better.. this is scary scary stuff... and nobody knows about it.. thank you..we should spread the word !
It’s honestly crazy to think that number of people effected by CES is roughly the same as cystic fibrosis. But they do fundraisers and raise awareness for CF but every with CES just us a “bad back”
Thank you I was scrolling Cauda equana Sydrome and ran across your page..i had my surgery in 2020 ..what a crap year for my surgery in 2020 Not to many Cauda equana Sydrome videos on here Thank you for sharing your story My story is a crap show to on everything as well dealing with drs during that time and still today in 2024 still i am at whwre i am but nerve conduction test i am worse....scary to say the least ..like what is my future ..and my nuro and neuro surgeon dealing with this is really like i am at where i am..but stillnot wanting toexcept it at all in my 40s on a roller Walker and fall sometimes....and yup the looks from folks and words they say to me....Invisible illness diseases are so frustrating I am rambling But we are all blessed and have a purpose Bless you and yours and thanks again for sharing your story I know this is going to help folks ..so thanks again you sharing I wish i stood stronger to advocate for myself so i i pray folks listen to there bodies and speak up more because this is crap and never eabt anyone to go thru this or what you have been thru Thank's again
You are welcome! It’s sad and frustrating how many folks with CES have such similar stories about being ignored and brushed off by doctors and only getting actual help when it’s too little too late. There is hope and there is potential for improvement. Facebook has some groups for CES with lots of helpful info and folks that will listen and understand what you’re going through.
@@misadventureswithcaudaequi64 oh thank you I been wondering where I can find some folks similar to us....I even asked my neurologist and neuro surgeon Thanks so much and sleep tight Y'all and thanks again Keep speaking out you are helping even if folks don't comment here Peace healing and blessings
Hi. I have suffered low back pain since u was in my teens, abd tingling and numbness from my mid- 20s. My two MRIs have shown significant change in my L4 region, and believe me, im starting to feel the effects already. Tingling, numbness, weakness......eyeroll......and still waiting to hear about a meeting with the neurological team to discuss surgery.......I'm in regional QLD......slow as here
I am struggling with all these symptoms right now. I have lost bladder and bowl function... I have numbness below my knees and my feet tingle and burn... I had a fusion in my c6 c7 and my nerves never regenerated.... My right arm is 3/4 destroyed by nerve damage... Im 6'1" and I have been extremely hard onnmy body... Athletics and work. I currently cant woek right now. Im struggling to even get on to disability. This is so ridiculous.... The pain is unbelievable... Nerve pain is no joke. It make child birth look easy... Disability thinks I can go back to work full time... I dont know how im going to get threw this. I have no family or friends for support...
@@misadventureswithcaudaequi64 I have to get another referral to a neurosurgeon... In Canada it's brutal to not only get an MRI but also have someone from neurology help out... I have a social worker also working with me to get help .. everywhere I go I get a no and sent home to suffer...
OMG the walker in the scooter! People are freakin' clueless. At Outback a few nights ago I was shuffling around with my walker, obviously struggling, and two little old ladies raised an eyebrow at me. You think I'm leaning all my weight on this ugly grey hospital walker for fun?!
Jeannette & Brandon H my worst experience with little old ladies was being passed by two of them trying to cross from the handicap parking into the store. I was obviously struggling and they looked down their noses at me and then plopped into the last 2 scooters Walmart had. I had to sit on the smokers bench by the front door and wait for my wife and kid to do the shopping and come back.
Thank you for sharing your story. Actually, I had an emergency surgery in September, 2022, after 72 hours of CES symptoms. Although I have had physiotherapy exercises twice a day for a year and half, I am still struggling with numbness, tingling and foot drops. I also have catheter and bowel problems. Some papers suggest that we cannot expect nerve regeneration after two years. Do you agree with that? I can’t imagine what it would be the case. I don’t want to lose my hope. I just want to cling on my hope while doing the things I can. It would be more than happy if you could share me your thoughts. Thank you and hope you get better.
Some of what I’ve read says 2 years is the limit and others say that the CE nerves are able to regenerate at roughly 1-2mm per month. So however many millimeters it is from the level of your injury to the tip of your toes times 1 or 2 is your window in months of how long it could take those nerves to completely replace themselves - which significantly increases the window for potential recovery of sensation and mobility. Not to say you’ll ever get 100% better, but I’m far better now at 7.5 years than I was at 2 years when they said I was as good as I’d ever get. And considering the neurosurgeon had zero hope I would ever walk again, I’m light years ahead of what I was told was possible.
I hear you very well mate. Numerness groin pain butt, very bad , foot drop ,right side. Now l tolilet can’t walk far lay down fractured L 4/5 S1 Now mid Sept 24 Hope hope u are ok now I wish I was well. I hope to God this works for me bloody Drs over them. Bloody insurance they are leachers take money How ever when you need to claim different story.
It’s one of those things you have to take day by day and be damn grateful for the good days because the bad days really tear you apart. Don’t be afraid to research doctors and read reviews before you go see them and if your gut says they aren’t worth it, trust your gut and find another.
Rayna Haws doctors claim CES is rare and statistics show it is about as prevalent as cystic fibrosis. But when you consider how generally uninformed doctors are about CES, it’s no surprise when folks say “whoa, I have/had the same symptoms!”
Sorry for the incoming blethering comment but I'm so riddled with anxiety about this! I'm in so much pain. I've seen a physio and been referred to orthopedics, I've also been given a list of 'red flag' symptoms for cauda equina and told to go to A&E if I have any combination of them. The things on this list seem very severe and give the impression that by the time they occur, damage is already done. Things like loss of feeling, loss of bowel/bladder control etc My symptoms aren't that extreme, but a lot of them are what I've been calling 'close but not quite' and can be found listed as red flags elsewhere. I'm torn as to whether I should make a bigger fuss about it or try and stay calm and wait for my appointment at the hospital. It's a month away, and I don't think I can take another day of this, never mind a month. I don't know what to dooooo!!! 😅 So here I am on RUclips at 2 am watching your video and rambling in your comments 😂
Some of the red flag symptoms like the loss of bowel and bladder control are the “you absolutely need to see a doctor immediately” but pay attention to the others like numbness and weakness. Take note of their severity and if they change. If they are getting worse, go back to the doctor sooner and advocate for yourself about them getting worse. Some doctors won’t care UNTIL you have all the symptoms because they don’t understand that it’s not a checklist and if you have all of them, you’re already paralyzed. My third time around I had an emergency doctor tell me I didn’t have enough of the symptoms for it to be an emergency. I told her if I did have all the symptoms then I’d already be paralyzed and I was there trying to prevent that from happening AGAIN. She finally consulted another doctor who agreed with me and I was sent for a CT scan and found to have another herniated disc compressing the nerves. When she came back with the results I told her it was almost like I knew what I was talking about because I had been through it TWICE before. She got a little more education from me on CES and promised she would do better about listening to patients and not trusting Google for everything.
It’s all about advocating for him and sometimes finding a different doctor (neurosurgeon) is your best bet. Most doctors don’t know any more about CES than what they read on Wikipedia.
realy yet its so damn painful.my husband is ringing his doctor again this morning to demand an MRI scan si we will see what happens this morning @@misadventureswithcaudaequi64
Hi. Going on 4 months since CES surgery. Having bladder issue can't pee having to cath. Did u have this and if you recovered how long did It take. Thanks hope to hear back
I did struggle with neurogenic bladder at the beginning. I never had to cath except while in the hospital but I also didn’t have a strong urge to go and had retention issues. Lots of CES folks I’ve talked to have had success in seeing a pelvic floor specialist and regaining some control.
Thank you for sharing your story. Sorry you have to suffer from dumbass mistakes of dumbass medical personnel. I am 65 and have been battling back issues long time. The compressed nerves in my lumbar spine cause me to loose my legs if I am forced to stand over 10 minutes or so. Walking 100 feet causes leg pain letting me know it’s time to sit down. My docs want to implant an SCS to block pain. Best wishes brother.
I have for the most part. Some days I still have surprises and retention can be questionable. At the beginning I had hyperactive bowels and urine retention. The hospital put in a Foley catheter but didn’t put it in far enough and dang near ruptured my prostate. So then I had complications from that. Ended up having a bladder study done which proved what I had been telling the doctors. Pelvic floor exercises helped some, but since I still have saddle anesthesia and residual numbness, the exercises are limited at best.
My daughter was 24 yrs old when cauda equine smacked her hard. She had 2 back surgeries in March 2020. Your story sounds so similar to hers. She was the youngest in rehabilitation and doctors here blew off her pain. She couldn't walk and her right leg was numb. Drs said it was her sciatica or due to her being diabetic. I had to call an ambulance for her on March 10th 2020 and the driver said she was faking it. Got her to the hospital and the dr in the E.R. actually did her job and in 10 minutes knew what was going on. They sent her by ambulance that night to a city 90 miles away. She had surgery on March 11th and than again on March 12th, spent a few days in the ICU. She came home in April and is continuing to go through physical therapy. She has drop foot in both feet, hasn't regained much feeling in her saddle area and can walk with a walker short distances. With covid going on I got kicked out of the hospital. Dr's told her it could take her up to 2 yrs to recover. What she will gain back who knows. I fought with the hospitals and still am. We had never even heard of cauda equine before. She turned 25 yrs old this past July. She had to move back home so I could help her. She has to re-train her bladder and learn to walk again. There is so much more I could say about the syndrome but I won't. Your story touched me. Stay strong & positive!!
Cathy, it’s truly sickening to hear that so many people have had practically the same experience as me. Knowing what I went through and will still have to go through is not something I would wish on anyone. If you or your daughter ever need someone to talk to, feel free to send me a message on Instagram @nakapabo
So how are you now & what have you regained & not regained in functions lost at this point? TY so much for posting I've been fighting Lumbar surgery for congenital spinal stenosis & effects for 22yrs. First came low back pain from Lumbar stenosis, spondylosis, bilateral foraminal stenonis disc disease...etc. I finally gave in after 22yrs & was on my way in for a 3 level Laminectomy this past May 2023 but on my PreOp OV I mentioned to my neurosurgeon that my hands went numb a year ago at the same time so he ordered a Cervical & Thoracic MRI stat!! Long story short on May 8th, 2023 I had a four level Cervical Fusion & Discectomy due to moderate & severe cord compressions & a lot of bone spur growth. Now 2.5 mos later I'm going in for the 3 level open Laminectomy decompression & forinectomy for bulging & fragmented disc & more bone spur clean up to relieve all the bilateral foraminal spaces compressed nerves. I have waited too long after being told there's nothing they can do but an eventual fusion at my L4-5 for my grade 1 spondylolisthesis & I was I was born with stenosis & eventually you'll need some surgery if it gets worse. So I just kept fighting like thru the pain another 22yrs like a pro. Until now, these past 2yrs my symptoms have snowballed FAST & I've now developed almost full CES & full drop foot in my right foot & partial in my left & can barely walk with a rollator walker...I screwed up. For everyone out there suspecting ANY Neuro issues DON'T WAIT be your own advocate put your health first bc being semi paralyzed with numb feet, legs, saddle area & a bladder that does not work properly really is horrific...it's not worth risking with waiting. God bless you all that are fighting CES & for you sweet man for sharing your story!! People need to know how truly serious CES is & spread the word. Best to you & yours always!
My daughter's father had that. He was paralyzed. After 8 days he died because of pulmonary embolism. I wish he would have gone to the doctor to adress his back pain he had for years.. God bless you 🙏 a miracle
Brother, your story sounds Identical to mine. I was diagnosed in 2014 and had emergency surgery. I spent a week in the hospital and a month in a rehab facility. I was also the youngest person there. It was hard being away from my wife and daughter. After the rehab facility, went home but returned twice a week for a 2 hour rehab visit and self excercises at home. I was in a wheelchair for 7 months, then graduated to a walker and then to a cane at 10 months. I started walking without a cane at a year. I use a cane when I know that I will be on uneven surfaces or will be walking long distances. My balance sucks because I am basically numb below my knees and have dropfoot on my left leg. I am now 9 years out and I haven't improved or gotten any worse other than the rogue leg pain and balance issues.
I know what you went through and are going through. Hang tough and keep on keeping on. I think this is one of the worse conditions that a person can have because people look at you like what's wrong and don't understand.
May God bless you Sir.
It’s truly a sadistic condition. Normally my right side is worse but the last few days my left side is out to get me. I’ve got the drunk shuffle going on and leg cramps too. It’s not a fun combination to be semi-walking and have the inside of my knee completely spazzed up.
thank you for sharing. I'm just 8 mths living with CES. and the challenges that I have face are crazy .
I'm currently waiting for a follow up appointment after an initial consultation and scheduled MRI W/WO contrast. I've already been diagnosed with spinal stenosis and had a laminectomy at L3-L4 with no relief. I have 3 herniated discs and 2 bulging discs. Severe disc disease at L5-S1, fortunately no urinary incontinence but rear back pain into my saddle area. I'm praying my new neurosurgeon will take care of my issues. My advice to everyone is educate yourself as much as possible as well as advocate on your level of care. Don't let them dismiss your concerns, you owe it to yourself.
It’s always worth mentioning - multiple times to everyone that will listen during appointments and hospital visits - that you have a history of CES symptoms and want everything checked out and addressed before you leave. It’s abhorrent how much we have to advocate for our own care to the “medical professionals” but if that’s what it takes to get treatment before you’re paralyzed, then it’s worth doing.
Oh my word! Your story is just like mine. I had cauda equina in 2007, 2014 and again in 2022. I didn't realise you could have it more than once. I also couldn't believe that the doctors still didn't recognise it and still made the same mistakes, despite me pleading with them. Unfortunately, my paralysis is permanent now, and I've no bladder or bowel function. I have taken up archery, though, and can do it in my wheelchair.
I hope you have had further improvements since this video.
It’s truly insane how many people have the same story and even still how many of them have to repeat it. Archery has been a great way for me to be able to focus my body on doing something that I still have control over. Some days, I just have to do it sitting down because my legs just won’t cooperate and my focus is so strong on my arms and chest that it’s like my brain forgets it still has to tell my legs what to do since they can’t do it on their own.
I was seeing an orthopedic sports medicine doctor and he put me off for years with a bulging disc at T11 T12 saying it's not that serious. I went to see a neurosurgeon and he was like WTH! this should have been taken care of a long long time ago. Ortho's are there for the money and mainly want to work on your bones and don't look at the nerves. I subbed and liked and shared because your story is important and you deserve more views more subs and more respect. God Bless you.
Thank you sir! I am continually amazed at the number of people that have similar stories of seeing a doctor that should know better and being ignored only to see a different doctor that absolutely flips out over it.
I’m in the midst of my second lumbar surgery on the opposite side. I just asked about Cauda Equina syndrome and my surgeon chuckled and pretty much said That “syndrome” was BS. I’m only 50. I have just about every symptom including the bowel/urinary and shooting pain and numbness. My MRI showed two new spinal stenosis and no discs between L3, L4, L5 and S1. The numbness and pain shooting to my feet is scary and sometimes makes my whole leg give out.
Thank you so much for telling your story! I hope and pray you will continue to get better. ❤️🩹
Do yourself a favor and find a different neurosurgeon. That one is living proof that D’s get degrees and is not looking to learn or improve himself in any way.
Find a new dr..how arrogant
Thank you for this in depth account and warning.
I've had pain in my back, groin and down my legs for years.
Having multiple episodes where I'm unable to move and won't call an ambulance because of the severity of the pain.
The numbness is new and isn't constant right now, if I lay in the right position it lets up. I don't have bladder retention. When my legs and saddle region go numb, I do have to rush to the bathroom, but I can tell that I need to go.
Waiting on insurance to approve an MRI.
As clear as the warning signs are, doctors will still put off any legitimate tests and treatments but make no mistake - the longer it takes before intervention, the more likely the negative effects will become permanent. They are not worth the risk.
I was diagnosed November 2022 after I got up one morning and couldn't urinate. Had surgery the next morning. It's 10 months later and I still can't urinate on my own, can't feel a bowel movement. I had a herniated disc causing the sciatic nerve pain in my left leg (surgery resolved this), but I also have an extra bone in my back compressing another bone (hence, the nerves couldn't send signals to my saddle region). Cauda Equina aint' no joke! I'm grateful for you sharing your story. I thought I was alone in this journey.
For some reason, doctors like to thump their own chest for treating “such a rare condition” but then offer absolutely ZERO help or guidance on everything else. You are absolutely not alone. There’s a couple CES groups on Facebook where folks share a lot of good info on their successes and experiences with different treatments. Keep tabs on your diet and ensure you’re getting adequate water and fiber intake. It’ll help get your bowels on a manageable schedule and reduce the chances of having an “accident”.
I do not believe I have the same syndrome, but ever since November my back has been throwing out on me. Its enough to bring me to the ground and I'm only 18. hopefully it wont develope into something worse. Good luck dude
Find a competent doctor and have them check everything out. An ounce of prevention is worth more than a pound of cure - especially considering there’s no cure for being paralyzed.
Please get an MRI, and avoid sitting in a slouching position or too long, especially avoid computer games if that’s your thing as most young people do nowadays.
Again, please get an MRI of your back pain. And drink Vitamin Bcomplex ad do lots of research study on how to take care of your spine. You are SOOO young and you can have a bright future ahead of you, please help and take good care of yourself.
How's your spine now ? I got it bad too
Thank you for sharing your story. I understand lower back pain and the years of backlash. I am so sorry that you suffered in this way. It really is unacceptable and against everything society says about physical and mental wellness. I simply have a TRUST issue now with the medical 🏥 profession when it comes to my wellbeing.
There’s an old adage about keeping lawyers and bankers at a distance but I’ve taken the stance of the old Russian proverb to trust but verify. And I understand most reviews left are negative in nature but between research, reviews and my God-given gut instinct - I have zero qualms finding a different doctor.
I cried as you're the first person that I've heard a story so similar to mine
I've hardly been able to eat food for 3 years since a dude tricked me and got me hurt bad at work over a management position... I was early 20's , now late 20's... doctors are scumbags!! I've never been treated so bad as I have by "doctors and medical providers "! My lower spine is crushed up. And upper spine has injuries too... I've been telling the doctors that my spine hurts up to 9-10 pain and I scream and crap my guts out after eating, for 3 years now.... worthless scumbags dont carry the least bit and throw me out the door. When I have multiple MRI's to prove it! .... this past week I finally found the terminology for it by myself on RUclips! Cauda equina syndrome....! Not one of 10 doctors and " professionals " that I've seen ever uttered those words 😑... I cant lift 5 pounds either!! For 3 F N years.. or ride a mower etc.. ... recently I finally got a doctor to write a note for dissabilty saying " no lifting more than 5 lbs, no sitting or standing for more than 30 minutes " ... and nothing about craping his food out and starving to death for 3 years. .. I get the leg pains. .. ... use canes sometimes and roller walker sometimes ..
When you got to the point in your story about the shopping in your 20's and people being BEYOND PATHETIC.. I know EXACTLY how that is.. I tried the electric cart a couple times and that's it, once I tried and the battery went bad at the back of Walmart and the scooter went to bucking!!!!😬😬😬 ahhhhhh F ing hurt me so much!! Should have sued walmart for that! Ahhmnm!! Then of course the other scooters were dead... so I'll most likely not be using those again.. and you and everyone else needs to be aware that those things can "buck"like a horse when the battery or something is wrong with them...but yeah so many people are wiered and cause problems when a young man with all 4 limbs only carys a few things in the store and doesn't push a cart... .. I just realised I gotta get a electric cart when I get my dissabilty and a rack on the back of my hopefully 73- 91 suburban..... never get a white van! People freak out about those now.
Almost every story I hear about CES has SO MANY similarities about how it happened, how doctors screwed up, and how much suffering it inflicted in every aspect of life. You’ll get labeled as a drug seeker but the truth is, there are no drugs that help. Some may mitigate a few symptoms but nothing makes nerve pain better. Do your research before visiting a doctor, take notes, and trust your gut. If your gut tells you a doctor is lying or doesn’t know what they’re talking about, you’re probably right and you need to find a new doctor. CES wasn’t even considered a legitimate diagnosis until the 1990’s so it shouldn’t be a surprise that most doctors only know what they read off a Wikipedia article.
Thank you for your story, how terrible for you and yes doctors are not all equally responsible and we are treated as a number. Hope you are doing better today and you can thrive without the big problems, Lovely daughter you have so sweet she looks.
Wishing you the best and you have support from people around you as it is very hard to be hit so hard, I am watching this video as I have the same problems and know I have 2 smashed discs in L5 and S1, due to a fall from a table in January 2022, But now I'm being referred for urgent scanning hmm on November 5 what? but I don't think I'll hold out until then, because I'm getting worse and worse, both with pain, numbness and my legs failing. I have even contacted the hospital with that doctor and said I am about to capitulate. Unbelievable how we are treated, Take care dear and I will remember what you said here, Thanks,
Take notes, tell every medical provider and other staff you meet about the red flag symptoms and how long you’ve been having them. Medical schools are not teaching about this condition but it has the same prevalence as cystic fibrosis and there’s MILLIONS of dollars spent on CF research every year. We have to teach doctors what’s wrong with us and why they need to pay attention to it.
thank you for sharing your story.... it is helping people to understand this terrible thing ... i have spinal stenois cervical and lumber areas. i am much older than you are tho...i am so sorry for all this has happened... i really hope your family is well and you are doing better.. this is scary scary stuff... and nobody knows about it.. thank you..we should spread the word !
It’s honestly crazy to think that number of people effected by CES is roughly the same as cystic fibrosis. But they do fundraisers and raise awareness for CF but every with CES just us a “bad back”
Thank you
I was scrolling Cauda equana Sydrome and ran across your page..i had my surgery in 2020 ..what a crap year for my surgery in 2020
Not to many Cauda equana Sydrome videos on here
Thank you for sharing your story
My story is a crap show to on everything as well dealing with drs during that time and still today in 2024 still i am at whwre i am but nerve conduction test i am worse....scary to say the least ..like what is my future ..and my nuro and neuro surgeon dealing with this is really like i am at where i am..but stillnot wanting toexcept it at all in my 40s on a roller Walker and fall sometimes....and yup the looks from folks and words they say to me....Invisible illness diseases are so frustrating
I am rambling
But we are all blessed and have a purpose
Bless you and yours and thanks again for sharing your story
I know this is going to help folks ..so thanks again you sharing
I wish i stood stronger to advocate for myself so i i pray folks listen to there bodies and speak up more because this is crap and never eabt anyone to go thru this or what you have been thru
Thank's again
You are welcome! It’s sad and frustrating how many folks with CES have such similar stories about being ignored and brushed off by doctors and only getting actual help when it’s too little too late. There is hope and there is potential for improvement. Facebook has some groups for CES with lots of helpful info and folks that will listen and understand what you’re going through.
@@misadventureswithcaudaequi64 oh thank you
I been wondering where I can find some folks similar to us....I even asked my neurologist and neuro surgeon
Thanks so much and sleep tight Y'all and thanks again
Keep speaking out you are helping even if folks don't comment here
Peace healing and blessings
Hi. I have suffered low back pain since u was in my teens, abd tingling and numbness from my mid- 20s.
My two MRIs have shown significant change in my L4 region, and believe me, im starting to feel the effects already. Tingling, numbness, weakness......eyeroll......and still waiting to hear about a meeting with the neurological team to discuss surgery.......I'm in regional QLD......slow as here
Avoid sitting too long, walking helps. Drinking Vitamin B complex, avoiding sugary foods and beverages. Hope your condition improves and gets healed
I am struggling with all these symptoms right now. I have lost bladder and bowl function... I have numbness below my knees and my feet tingle and burn... I had a fusion in my c6 c7 and my nerves never regenerated.... My right arm is 3/4 destroyed by nerve damage... Im 6'1" and I have been extremely hard onnmy body... Athletics and work. I currently cant woek right now. Im struggling to even get on to disability. This is so ridiculous.... The pain is unbelievable... Nerve pain is no joke. It make child birth look easy... Disability thinks I can go back to work full time... I dont know how im going to get threw this. I have no family or friends for support...
Have you had consulted a neurosurgeon recently? A fusion at c6/7 is in the neck so any nerve damage there will impact far more of the body than CES.
@@misadventureswithcaudaequi64 I have to get another referral to a neurosurgeon... In Canada it's brutal to not only get an MRI but also have someone from neurology help out... I have a social worker also working with me to get help .. everywhere I go I get a no and sent home to suffer...
OMG the walker in the scooter! People are freakin' clueless. At Outback a few nights ago I was shuffling around with my walker, obviously struggling, and two little old ladies raised an eyebrow at me. You think I'm leaning all my weight on this ugly grey hospital walker for fun?!
Jeannette & Brandon H my worst experience with little old ladies was being passed by two of them trying to cross from the handicap parking into the store. I was obviously struggling and they looked down their noses at me and then plopped into the last 2 scooters Walmart had. I had to sit on the smokers bench by the front door and wait for my wife and kid to do the shopping and come back.
@@misadventureswithcaudaequi64 🙏💥 wow! Yup I can see that .. the pure evil of people...
Thanks for sharing, I truly hope that things get better for you
Thank you for sharing your story. Actually, I had an emergency surgery in September, 2022, after 72 hours of CES symptoms. Although I have had physiotherapy exercises twice a day for a year and half, I am still struggling with numbness, tingling and foot drops. I also have catheter and bowel problems. Some papers suggest that we cannot expect nerve regeneration after two years. Do you agree with that? I can’t imagine what it would be the case. I don’t want to lose my hope. I just want to cling on my hope while doing the things I can.
It would be more than happy if you could share me your thoughts.
Thank you and hope you get better.
Some of what I’ve read says 2 years is the limit and others say that the CE nerves are able to regenerate at roughly 1-2mm per month. So however many millimeters it is from the level of your injury to the tip of your toes times 1 or 2 is your window in months of how long it could take those nerves to completely replace themselves - which significantly increases the window for potential recovery of sensation and mobility. Not to say you’ll ever get 100% better, but I’m far better now at 7.5 years than I was at 2 years when they said I was as good as I’d ever get. And considering the neurosurgeon had zero hope I would ever walk again, I’m light years ahead of what I was told was possible.
Sending hugs
I hear you very well mate. Numerness groin pain butt, very bad , foot drop ,right side. Now l tolilet can’t walk far lay down fractured L 4/5 S1 Now mid Sept 24 Hope hope u are ok now I wish I was well. I hope to God this works for me bloody Drs over them. Bloody insurance they are leachers take money How ever when you need to claim different story.
It’s one of those things you have to take day by day and be damn grateful for the good days because the bad days really tear you apart. Don’t be afraid to research doctors and read reviews before you go see them and if your gut says they aren’t worth it, trust your gut and find another.
My husband has this too! Your story is so similar to his...I can't even believe it. His happened about three years ago.
Rayna Haws doctors claim CES is rare and statistics show it is about as prevalent as cystic fibrosis. But when you consider how generally uninformed doctors are about CES, it’s no surprise when folks say “whoa, I have/had the same symptoms!”
Sorry for the incoming blethering comment but I'm so riddled with anxiety about this!
I'm in so much pain. I've seen a physio and been referred to orthopedics, I've also been given a list of 'red flag' symptoms for cauda equina and told to go to A&E if I have any combination of them. The things on this list seem very severe and give the impression that by the time they occur, damage is already done. Things like loss of feeling, loss of bowel/bladder control etc My symptoms aren't that extreme, but a lot of them are what I've been calling 'close but not quite' and can be found listed as red flags elsewhere.
I'm torn as to whether I should make a bigger fuss about it or try and stay calm and wait for my appointment at the hospital. It's a month away, and I don't think I can take another day of this, never mind a month. I don't know what to dooooo!!! 😅 So here I am on RUclips at 2 am watching your video and rambling in your comments 😂
Some of the red flag symptoms like the loss of bowel and bladder control are the “you absolutely need to see a doctor immediately” but pay attention to the others like numbness and weakness. Take note of their severity and if they change. If they are getting worse, go back to the doctor sooner and advocate for yourself about them getting worse. Some doctors won’t care UNTIL you have all the symptoms because they don’t understand that it’s not a checklist and if you have all of them, you’re already paralyzed. My third time around I had an emergency doctor tell me I didn’t have enough of the symptoms for it to be an emergency. I told her if I did have all the symptoms then I’d already be paralyzed and I was there trying to prevent that from happening AGAIN. She finally consulted another doctor who agreed with me and I was sent for a CT scan and found to have another herniated disc compressing the nerves. When she came back with the results I told her it was almost like I knew what I was talking about because I had been through it TWICE before. She got a little more education from me on CES and promised she would do better about listening to patients and not trusting Google for everything.
No music pleease
my husband 58years old has been told he has this yet nothing is being done
It’s all about advocating for him and sometimes finding a different doctor (neurosurgeon) is your best bet. Most doctors don’t know any more about CES than what they read on Wikipedia.
realy yet its so damn painful.my husband is ringing his doctor again this morning to demand an MRI scan si we will see what happens this morning
@@misadventureswithcaudaequi64
Hi. Going on 4 months since CES surgery. Having bladder issue can't pee having to cath. Did u have this and if you recovered how long did It take. Thanks hope to hear back
I did struggle with neurogenic bladder at the beginning. I never had to cath except while in the hospital but I also didn’t have a strong urge to go and had retention issues. Lots of CES folks I’ve talked to have had success in seeing a pelvic floor specialist and regaining some control.
you had some backache earlier for few years or you had this pain just suddenly? Kindly answer.
I'm so so sad for u. Allah bless u
I developed back pain only a few months prior and I attributed it to all the heavy lifting while moving my family to a new home.
@@misadventureswithcaudaequi64 o I wish that you get well soon.
Thank you for sharing your story. Sorry you have to suffer from dumbass mistakes of dumbass medical personnel. I am 65 and have been battling back issues long time. The compressed nerves in my lumbar spine cause me to loose my legs if I am forced to stand over 10 minutes or so. Walking 100 feet causes leg pain letting me know it’s time to sit down. My docs want to implant an SCS to block pain. Best wishes brother.
And saddle knumbness
I have cauda equine syndrome. . Have you regained bladder and bowel control? God bless you.
I have for the most part. Some days I still have surprises and retention can be questionable. At the beginning I had hyperactive bowels and urine retention. The hospital put in a Foley catheter but didn’t put it in far enough and dang near ruptured my prostate. So then I had complications from that. Ended up having a bladder study done which proved what I had been telling the doctors. Pelvic floor exercises helped some, but since I still have saddle anesthesia and residual numbness, the exercises are limited at best.
My daughter was 24 yrs old when cauda equine smacked her hard. She had 2 back surgeries in March 2020. Your story sounds so similar to hers. She was the youngest in rehabilitation and doctors here blew off her pain. She couldn't walk and her right leg was numb. Drs said it was her sciatica or due to her being diabetic. I had to call an ambulance for her on March 10th 2020 and the driver said she was faking it. Got her to the hospital and the dr in the E.R. actually did her job and in 10 minutes knew what was going on. They sent her by ambulance that night to a city 90 miles away. She had surgery on March 11th and than again on March 12th, spent a few days in the ICU. She came home in April and is continuing to go through physical therapy. She has drop foot in both feet, hasn't regained much feeling in her saddle area and can walk with a walker short distances. With covid going on I got kicked out of the hospital. Dr's told her it could take her up to 2 yrs to recover. What she will gain back who knows. I fought with the hospitals and still am. We had never even heard of cauda equine before. She turned 25 yrs old this past July. She had to move back home so I could help her. She has to re-train her bladder and learn to walk again. There is so much more I could say about the syndrome but I won't. Your story touched me. Stay strong & positive!!
Cathy, it’s truly sickening to hear that so many people have had practically the same experience as me. Knowing what I went through and will still have to go through is not something I would wish on anyone. If you or your daughter ever need someone to talk to, feel free to send me a message on Instagram @nakapabo
@@misadventureswithcaudaequi64 thank you!!
So how are you now & what have you regained & not regained in functions lost at this point? TY so much for posting I've been fighting Lumbar surgery for congenital spinal stenosis & effects for 22yrs. First came low back pain from Lumbar stenosis, spondylosis, bilateral foraminal stenonis disc disease...etc. I finally gave in after 22yrs & was on my way in for a 3 level Laminectomy this past May 2023 but on my PreOp OV I mentioned to my neurosurgeon that my hands went numb a year ago at the same time so he ordered a Cervical & Thoracic MRI stat!! Long story short on May 8th, 2023 I had a four level Cervical Fusion & Discectomy due to moderate & severe cord compressions & a lot of bone spur growth.
Now 2.5 mos later I'm going in for the 3 level open Laminectomy decompression & forinectomy for bulging & fragmented disc & more bone spur clean up to relieve all the bilateral foraminal spaces compressed nerves. I have waited too long after being told there's nothing they can do but an eventual fusion at my L4-5 for my grade 1 spondylolisthesis & I was I was born with stenosis & eventually you'll need some surgery if it gets worse. So I just kept fighting like thru the pain another 22yrs like a pro. Until now, these past 2yrs my symptoms have snowballed FAST & I've now developed almost full CES & full drop foot in my right foot & partial in my left & can barely walk with a rollator walker...I screwed up. For everyone out there suspecting ANY Neuro issues DON'T WAIT be your own advocate put your health first bc being semi paralyzed with numb feet, legs, saddle area & a bladder that does not work properly really is horrific...it's not worth risking with waiting. God bless you all that are fighting CES & for you sweet man for sharing your story!! People need to know how truly serious CES is & spread the word. Best to you & yours always!
I really hopE you sued the doctor.
I might make a video about that. I tried.
😞
Can ces caused by injury only.
In many cases it is, but mine was not from an injury.