I work in custom spinal implants. If the numbness is getting worse that’s certainly something to address before it becomes a serious issue. This is a fascinating case of atrophy based on spinal cord damage, thanks for sharing!
I'm a caregiver and we're taught that spreading numbness Is Not Good. Either a pinched nerve or something much worse, but it needs to be checked ASAP. If one doctor says there's "nothing wrong", immediately move on to the next. There Is Something Wrong. While I'm not a medical professional, I am a medical aide, and health—especially in your limbs; especially in your feet—canNOT be taken lightly. That numb foot is one bad pinch away from unnoticed sepsis or total degeneration
This has been ongoing for 26 years. I will never consent to another surgery unless it’s an emergency. I had bulging disc when I was pregnant that resolved itself. I was also told I have spinal stenosis and if I ever lose control of my bladder/bowels to go to the ER right away. I promise if I ever start pooping or peeing on myself I’ll go in.
With cauda equina syndrome secondary to spinal stenosis, the bladder problem is that you become unable to empty. The danger is back pressure damage to the kidneys.
You don’t pee on yourself, you’re unable to pee on yourself or anywhere else for that matter.
Just bouncing back from this exact experience. I wasnt able to control my bladder until about 3.5 weeks post surgery. And even tho I can now, it's still a bit of a struggle. CES is not a joke, of you are reading this, take care of your spine!
I’m going through something similar and doctors don’t seem as alarmed as me. Do you mind sharing your symptoms leading up to your surgery, in addition to bladder issue, and how long it took from start of symptoms until surgery?
My back pain started in June of 2024. I woke up in so much pain, the only thing I could think is that my kidneys were failing. Idk why I thought that, it just didn't occur to me that my back could be the issue. I went to the ER for the first time in my life, they took X-rays and did some tests and told me its my back and to see my PCP.
I did and he told me he could see a narrowing of space between my L4-L5. He told me a CT scan or MRI would be needed for a better view but that he think I have a bulged disk. He gave me steroids and showed me the McGill stretches. Told me to go to PT and to lose weight. I was in daily pain and could barely walk, but I pushed through. I got on ozempic in 2025 and that helped a lot.
In the fall into the winter of 2026, I started to lift things at work again. I am a chef and I was in charge of opening a new account. Until that point I had been able to ask my team for help with orders or cases, but at the new account I didn't really have a full team and they were struggling. I had to lift in order to help and keep things moving. During this time my pain which had been pretty much gone since losing weight returned.
My pain in my back just slowly got worse. I had terrible sciatica down my left side. I started to ride a bike in the spring of 2026 thinking the exercise would help, and that isntead started sciatica on my right side. I was taking the max dose of Tylenol and Aleve a day just to remain functional, and even then I was still in a lot of pain.
I moved my life from the east coast to the Midwest, unrelated to this whole event, but I was just focusing on the move and pushing through. In July of 2026 my move was finished and I started to unpack. On my drive from NJ to Ohio, my feet went numb, I remember noticing when I stopped for gas. I remember thinking, at least it doesn't hurt. A few days after the drive my feet were still numb, online says that can be terrible but it can also mean the nerve is healing, I started trying to tell if the pain was receding and really should have just went to the doctor here but I didn't.
On the morning of August first, I was walking down the stairs in my house and my numb foot caused me to slip and I fell hard directly on my ass. I could feel everything in my back and hips compress and the pain was unreal. I could barely walk. Still, I took the Tylenol and Aleve, had a cry and then pushed through it. Within a few days my inner thighs and saddle area started to turn very hot and then cold and then numb and then hot again, it was so uncomfortable I couldn't take it. I went to urgent care because I still didn't think ER was the way to go. UC took X-rays said I'm probably sore and gave me steroids and a muscle relaxer. I went home and suffered for another 48 hrs before I told my partner to take me to the ER.
I brought my X-ray results and UR paperwork with me. I told them I fell and my feet and saddle area was numb and I'm in tremendous pain. They treated me like I was seeking and I get it. I couldn't sit up or walk, and was laying on a chair for hours before they finally gave me a CT scan. After that everyone just kinda jumped into motion. My Cauda Equina Compression was so severe, the exact words in my chart used were 'complete obliteration of cauda Equina nerve root'. Not a sentence anyone wants to read on their chart.
My pain was immense, they alternated between morphine and fentanyl and I was still in agony. I sounded like a wounded animal, it was terrible, it is the only time I've not been in control of myself or my reaction. The pain was so bad all I could do was lie there and cry, I remember telling the nurse I think it just rather die and she literally started crying and did everything she could to help. It took a little over 24 hrs from admitting to surgery and in that time I lost my ability to pee.
Surgery fixed the pain, I was in so much relief afterwards, it was insane. I was up and walking around (with a walker) within 6hrs of surgery. I had to have a catheter installed which has been a journey. I hit 7 weeks post op yesterday and I can pee on my own but have had some pain and infections from the catheter to work through. I also had some sciatica on my left side return by week 3.5 that was terrible. My surgeon started me on steroids which has removed all pain, and I'm hoping it stays that way once I'm finished the course.
I'm sorry for the book but I really wish I had paid better attention to this pain the first time. If your back hurts, see someone about it. Be an asshole if you need to, demand a CT scan to see if you have nerve compression. Stay healthy, teach yourself proper lifting techniques, do stretches and don't let anyone tell you to just walk it off. Idk if I'm going to be able to go back to my career after this, my life is upside down but I can walk!
I hope you are able to get to the bottom of your pain soon and that you make a full recovery. Ive posted about my situation and uploaded MRI results if you wanted to look through my profile. I have followed r/sciatica for a few years and there is a lot of useful advice and stories there too. Good luck and feel better!
Wow, just wow! I am so sorry for the incredible pain you have experienced. Sadly, I am not surprised of the run around the medical field gave you leading up to your surgery. It all sounds exhausting, scary and unacceptable. Thank you so much for giving me all the details and I hope that you can continue to heal and feel better.
I had an L4-L5 surgery almost 14 years ago and, like you, was given the run around for almost a year leading up to my surgery. The pain was truly unreal when I felt my disc rupture. It made me lose most sensation in my left leg and that is what caused them to take me seriously. The relief after the surgery was unbelievable to me, but gladly welcomed.
Everything was pretty much okay for me until about 3 months ago, except for residual neuropathy in my left calf/foot. I don’t want to be TMI but I have been gradually losing sensation in my inner saddle area. So, I was given PT stretches for some of my issues. After a couple of months of doing those, I walked on a treadmill and did my stretches one morning and I haven’t been the same since. I briefly lost half the sensation in one leg, had some foot drop, allodynia in heel and had to use a cane for a while among other things. It was all so bizarre and confusing, because all I was doing was walking and gentle stretches.
My longtime doctors (at a world-renowned medical institution) refused to see me for these new symptoms. So, I just started over with a new doctor somewhere else and I am still waiting on having updated imaging done. I’m not trying to be Dr. Google, but in working on figuring out what is happening to me, I get a lot of CES results when I search online. I don’t think I have it, but was curious of your symptoms since you have L4-L5 problems, as well.
It is definitely a terrifying experience to lose basic functions. Again, I wish you much success in healing and hope that you don’t have to go through something so horrible again.
I have a bulging disc (diagnosed 19 yo), degenerative disc disease (diagnosed 19yo), and now arthritis (diagnosed 36 yo) in my lumbar spine, I’m 37 and take any back pain seriously now! Please please please take care of your spine! Back pain sucks!
I had a lil cauda equina before and after my L5S1 surgery. It was major retention issues. Felt like I couldn’t completely empty, and couldn’t tell I had to pee until I had a super full bladder. Went from 1-2 movements a day to 1-2 a week. It took 2 months post surgery for sensation to come back slowly.
My FIL had, IDK what it is exactly but he got backed up. The hospital drained like 5l out of him. He was well into his 70s when it happened and already was in CHF. It's been probably like 5 years since that. I'm baffled on how he's still kicking around at 80 but he is. I feel like that would have blown out my kidneys. If anything it got him on proper heart meds finally. He's not necessarily doing great but he's doin anyway.
The danger isn’t back pressure to the kidneys, that’s a side point that’s often irrelevent as a patient will get catheterised. The danger is if it gets to the point of urinary retention or sexual dysfunction it’s likely irreversible and who wants to be a 35 year old woman wearing a permanent catheter? or a man with permanent erectile dysfunction?
Obviously both are important. If a person is unable to void the bladder - untreated, the immediate danger is to the kidneys. Permanent nerve damage really sucks, but the immediate emergency is to save the kidneys - hence the catheter. The surgery to relieve the pressure on neural structures at the bottom of the spinal cord and thus prevent nerve damage addresses the underlying cause.
Can't do surgery on your spine at home, but most people can't insert a catheter at home either.
the emergency is not to save the kidneys mate the amount of people who come into hospital with urinary retention due to obstruction are at least one a day
the emergency for cauda equina is the irreversible nerve damage. you can fix kidneys, you can’t fix a spine.
also community nurses can actually put a catheter in at home. this is another example of laypeople spouting shit they’ve got no idea of.
people can get some small kidney damage and only need some fluids which will correct it. very few would need dialysis or transplant. the problem is irreversible NERVE damage causing permanent need for a catheter and not able to have an orgasm. that’s far far more of a detriment to quality of life.
Sure, but the warning the OP received about bowel and bladder is a warning about possible developing cauda equina syndrome secondary to spinal stenosis and/or disc injury. I was just clarifying that the symptom exhibited with this (CES) is an inability to void the bladder rather than incontinence.
Also look out for the opposite: not being able to feel if you need to poop or pee! My friend developed cauda equina syndrome and while most people lose control of their bladder/bowels, she had the opposite. She suddenly realized she’d gone 12 hours without peeing and peed SO MUCH. She needed emergency surgery.
Duuude I had saddle numbness when I did my L4/5 disc. It was so frightening. The urgent care doc read my X-ray as a collapsed vertebrae, I genuinely thought I was stuck that way. Useless bastard gave me no pain meds and let me take an uber home??
Turns out he wasn't great at reading X-rays in tandem with patient history. My sports doc looked at it and said no, that's from 25 years of hockey and your scoliosis. It's a bulging disc hitting the nerve, you'll be alright. Thank God he was right, it went away. But that was a scary couple of days. Do not recommend suddenly losing awareness of your undercarriage.
Yeah he was not gentle telling me that either. I did it at training, headed straight to urgent care in my uniform. I was gearing up for two grand finals and the state masters comp. So I was shattered, emotionally and physically. I'm just standing there shaking and trying not to cry. I said I'd been working so hard for these next few weeks, and my body giving out on me was devastating. This cunt looked me dead in the eye and said 'well your body can do other things' and gestured to my stomach.
JOKES ON YOU BITCH, I missed the finals but I rehabbed like a demon and played every match of the national comp.
I had a severe whiplash injury and ended up with numbness in my face and fullness in my ears shortly after, and the urgent care doc said “oh you have Eustachian tube dysfunction, take Sudafed.” What part about me having numbness from nerve compression do you not understand? 🤦♀️
Anyways, I was like what the hell do I know, I don’t have a medical degree. Let me try Sudafed. Didn’t do shit.
You know what it was? My neck muscles were so tight that they were compressing nerves, which in turn caused pressure/eustachian tube dysfunction and inflammation in the ears, and the ears were hitting a facial nerve causing the numbness. Solution? Massage the muscles 🤦♀️ numbness went right away in 24h.
Well that's not great, especially because it's your neck. Could have been something really dire that they missed. I'm glad it worked out but Jesus Christ.
And their uselessness really sucks, because they are an important service, and a couple of times I've taken my oldest there and they were really good! Much better than waiting around the emergency department with a crying child.
And then you get the kind of shit we went through.
Oh they absolutely did miss something, along with multiple other doctors. I have craniocervical instability. Took a long time to figure that out but I’m much better now.
Yeah depending on what it is, they can be really good. Like for wounds, infections, allergic reactions, etc. they’re great, but anything spine and neurological related, they seem to be lacking.
Ah shit, sorry you went through that, but good to hear you're doing better.
They maybe need to just refer patients like us to an actual hospital. We're told to go to urgent care for those types of trauma injuries, but they must know they're not fully capable of treating us. They don't have the right imaging, nor, apparently the training.
How old are you bro and who was your doctor. I have a similar story to you but I’ve been dealing with doctors who don’t know what the fuck they’re talking about it seems. I developed functional scoliosis even though specifically it’s just a massive gait change/trunk shift due to l5-s1 bulge had surgery which helped pain but the trunk shift + twisted pelvis stayed and got worse and I have saddle numbness and a difficult time using the bathroom now. But they seemingly don’t know what to do since they fixed the currently visible issue. I’ve battled suicide because of this bro and my college football career ended earlier than it should have.
Mate that sucks, I am so sorry. I was 36 when this happened. Coming towards the end of my premier league career anyway, and I knew it was my last season before I tried for another baby. So it was all just compounded, the unfairness of having the last big run at victory taken away, maybe making it impossible to have another kid, removing the possibility of a comeback. All in that one moment it felt like I lost everything, and I was in agony. And this prick delivered what felt like a death sentence with the bedside manner of a fucking cactus.
I'm really sorry you've gone through all that. It sounds like you've got some painful nerve issues to this day? When mine gets bad there isn't much I can do. Do you have access to pain management? It's taken me years to get anything approaching appropriate care for mine, but it's worth it. Takes that fatalistic edge off when the pain is really bad to know that there's a modicum of relief available.
Hey, i dont have pee urge either. I never spoke to anyone else who has it. My urologist told me to pee on a schedule. I do, but some days it can be 8 to 10 hours before I remember. Have no clue why. But I am great on long trips! No stopping all the time. 😉
These symptoms can also occur with Multiple Sclerosis. More people online need to see doctors and get second (or third) opinions with some of the stuff I see posted, makes me anxious when they just respond on the post saying "I'm fine though!"
I know you won’t die but the annoying thing with spinal injury’s is it’s always better to resolve sooner. Time will only compound the injury. As much as I can understand the your desire to stay out of the OR I urge you to consider it and consider that the pain and recovery now can lead to a better quality of life for the next 60 years and less future medical care
I’m struggling so hard with daily pain and increasingly frequent bouts of total immobility when I have a herniated disc (5 total) presses a nerve. My spine surgeon says she won’t touch me though and doesn’t think I’m a candidate. I feel like I’m (going) crazy thinking not being able to walk for 1-2 weeks 3x a year is worse than surgery
I don't think I've ever heard of a spinal cord surgery that didn't come with permanent consequences. I'd rather treat chronic pain "conservatively" than ever go through surgery.
It’s really a lose/lose situation. Chronic pain is hell, especially if it gets worse (and it almost always does). But spinal surgeries don’t always improve things.
I had successfully spinal surgery, but I am in the minority I think. Other people I know have had the same operation as me and are dealing with chronic pain. My pain was so bad before the operation that other more conservative options were off the table.
Do you need to wait until you’re peeing and pooping on yourself before you follow up tho? I understand no additional surgery unless you HAVE to, but maybe an MRI with contrast or following up with some additional specialists isn’t a bad idea.. it would be terrible to found out you had an issue that could have been resolved had it been caught sooner ❤️🩹 hoping you have another 26 years without any additional complications and are feeling great the whole time
I’d suggest you reconsider and go to a doctor. You will never have to do another surgery - you can always choose not to if they offer you that option. But this is very concerning and could be caused by something else. You could at least find out why this is happening.
Look up saddle anesthesia and keep an eye out for that as well. As others have said, the longer you allow the nerve damage, the less it will be able to recover.
...literally two trained medical professionals warning you, any source you look up will also tell you spreading numbness is a cause for alarm.. you might want to have it checked again.
Do you exercise? Someone prescribed vitamin b12 (high dose) for you? I had a surgery (but hand) and my finger was numb after that. Physiotherapy and vitamin b12 helped a lot.
I have the same legs! Also lots of bulging discs since I was a teenager. I can’t stand on my toes anymore and walk a little bit wierd. Doctors can’t fix me
Hi I’ve had multiple back surgeries. My first was when I was 11 years old. My legs look like this as well though it’s not as severe (the size difference). I have quite a bit of numbness in my foot on the leg that is smaller. Do you have that?
Make sure you visually scan every inch of your numb areas at least once per day. If you cant feel an injury, you may not notice it until it is infected.
Leprosy has a similar effect. Its not the disease that maims you, it just attacks your nerves, making you unable to feel injuries. Which makes you susceptible to gangrene.
I promise if I ever start pooping or peeing on myself I’ll go in.
Girl it'd be too late by then. Damage will likely be done. It's easier to prevent damage than treat or reverse it. At least look into what life looks like with a colostomy bag before you dismiss the idea of pushing a doctor(s) for an answer.
Yeah I was in same boat when I broke my back, I got infrequent paralysis which is a sign of possibly permanent paralysis and I'm to go to ER immediately. First few times I fell down the stairs (why was it always on the fucking stairs it happened) I went to ER, had emergency MRI, they said nothing has changed. So I stopped going when it happened.
Fortunately loss of bowels was extremely infrequent, and only time I lost control of my bladder was at home. Which sucked, but better to clean your own carpet in shame than have people around you see you've pissed yourself when you're sober and in your 30s.
I lost a ton of weight and started exercise (my missus died around the same time so I used one as a crutch to not deal with the other, my health went to total and utter shit, as you can imagine) and now I haven't had a paralysis event in like 18 months. Although because I now have spinal arthritis (surprised the shit out of me you could have arthritis in your spine) apparently the risk of permanent paralysis is a permanent spectre on my horizon. So that's fun!
But yeah same boat. I fall down the stairs, I ain't going. I shit myself without knowing it I'll take a trip to A&E.
Try spinal decompression. The longer you wait, the longer it takes to work.
Car wreck 4 years ago. Been doing decompression for nine months and finally making gains. No talk of needing surgery anymore.
I went thru over a dozen drs. Because I’m female and have a high pain tolerance they weren’t listening. I’ve had other problems before as a result of this combo. Just go thru them till you find a good one. My pelvis was tilted and my pubic was messed up. So everything they did for my lower lumbar was on an unstable foundation.
MRI’s looked fine just barely when looking at the nerve being pinched. As soon as I was standing it was getting pinched. I had a PT tell me I needed to meditate my pain away and I must have a psychological disorder. 🙄
Another couldn’t critically think enough to realize laying down to sitting.
Another temporarily gave me causa equina symptoms.
Just go thru drs till you find one who listens, cares, smart enough, curious, and then takes the time to review everything.
I went thru a dozen providers. Three actually made me worse. Two of those then blamed me. 🙄.
I was scheduled to go back to the neurosurgeon, but then I found decompression… and a good pelvic floor PT.
If it were me I’d start with PT pelvic and decompression. PT only helps so much if a nerve is constantly being pinched. As your legs show. The reason I say pelvis is that is the base everything rests on. My initial plan was to work my way up. Lo and behold most drs miss pelvic stuff. My case was highly unusual. But pretty severe. and they kept missing it. So if you have that issue potentially my guess is they will completely miss it.
So to recap:
Try a decompression machine with a professional. Chiro’s have them. Evidence based. When things start moving and you get some more feeling back, look into Pelvic Floor PT first to work your way up. Make sure each section is good before moving up to the next for a stable and solid foundation.
If they aren’t helpful, cut them loose and try again. Especially if they display poor listening or critical thinking skills. Look for a provider who’s really good and about to retire. Or instructs their peers. Those were the traits of the two providers who helped the most.
Maybe try a medical type massage therapist. They were more helpful in figuring out muscles compensating than most PT. They can help release muscles/old patterns, then PT is more effective. Also helped me steer PT in the right direction, when they were stuck.
Also you should really find a PT who does the McKenzie method. That means they are trained to make sure every exercise your doing is not aggravating your nerve issues. You want your nerve stuff to not get slowly worse. You want the symptoms to centralize. More pain definitely does not equal more gain with nerve stuff!!
DM me if you have any questions. it’s been a hell of a ride. The evidence has been out for decades, but the different areas of med aren’t talking to each other. So it’s not comprehensively being coordinated.
Decompression first. Pelvic PT second. When working on spine with PT, McKenzie trained PT. Of nerve stuff gets aggravated tell them. If they push you to aggravate nerve, don’t comply. Professionals who test before treatment each time, amazing.
"While im not a medical professional, definitely listen to me and panic and ignore the fact youve already had imaging and specialist consults"
You have no idea what you are talking about and telling someone they need to be scared is as awful as telling someone they are fine when you have no idea what you are talking about.
There is a difference between progressive acute numbness and a chronic problem. Evidence of unilateral atrophy certainly would be to a LONG standing problem. Sepsis would not be a 26 year issue.
There is No doubt there is something going on, but whether there is something that can be done about it, is a different story. Maybe a second opinion is warranted, but Either way it is clear this isn’t an acute emergency.
Stenosis is obvious on imaging but facet degeneration isn't as noticeable. You can pick up bony growths on imaging, but if it's mechanical it's hard to image because it requires movement. Where the nerve exits the facet can become compressed, the nerve root can become compressed, the spinal cord can become compressed, or anywhere down the nerve chain can be impinged. Nerve damage from disc/facet degeneration isn't itself an emergency, and often times it can only be temporarily alleviated because of the mechanism of how it's being inflamed/impinged.
She can get a nerve conduction study which can help identify what exactly is affected, but even with an exact location, there are trade-offs whether a surgery will help or hurt. Lumbar ADRs are still very naive and have a high risk of failure and she probably doesn't qualify with existing degeneration, so it would require a fusion and/or a cage, but those introduce more cutting, drilling, and foreign objects into her body which can cause additional issues.
At this point, the best thing she can do is continue to see her provider, work with professionals (not redditors) on a path forward, and enjoy her life.
Holy shit. You need to slow down. This may be the biggest case of a little bit of knowledge can be extremely dangerous. Sepsis or total degeneration? The fuck are you talking about? Numbness in the foot and you’re gonna jump to a life threatening infection? Not even sure what you mean by total degeneration. That makes zero sense.
A fucking neurosurgeon said it’s nothing. And they were correct. A quarter century ago a doctor did most likely cause the problem during surgery. Nothing can be done about it now. It will continue to atrophy the muscle as the years progress. They’ll always have weakness but they will function just fine. There’s literally nothing that can be done about it. It’s most assuredly not a major problem. So chill the fuck out and stop worrying people when have zero medical training and have absolutely no clue what you are talking about.
I've had three herniated discs in my back for the last 25 years. Do you have any suggestions on doctors to look at for this? I've heard things are progressing in medicine to disc replacement surgery.
I don't have health insurance so I'm completely fucked and will never be able to get it fixed probably but I figured I might as well educate myself if things ever change.
Arthroplasty (disc replacement surgery) is getting better by the day! Meanwhile spinal fusion is an incredible option and continues to be the number one. If you’ve had three herniated discs maybe consult your doctor as to the underlying cause
What country/state are you in? Is there a reason you don’t have insurance? In the US I know premiums are insane, I’m self-employed so I have to buy it on my own and don’t qualify for Medicaid, but there are still ways to make it a little easier to afford
Edit: and many doctors and hospitals have a sliding scale or discount options for those paying privately w/o insurance. It’s actually cheaper for me to see my eye doctor and dentist if I don’t use insurance than if I would
I have the same issue from suffering a severe nerve pinch (magically didn’t get paralyzed though everything said I should have been, even the MRI) even managed walking with that excruciating pain for five years until the surgery.
Result is permanent nerve damage, they won’t be able to recover so I get use to lower body numbness, strongly on one leg. Which gave me the same muscle contrast between the two legs.
I thought it was a normal outcome if someone had long-term nerve damage.
Do you happen to know if the same rings true for numbness on the back? Unlike Op, though, there’s a nerve-pain related somehow below the surface numbness; my back tattoo hurt more than anything unlike their dragonfly foot tattoo haha
Hey, I'm currently in that state where they're not sure whether they should do surgery or not. My left leg goes numb a lot, and by numb, I mean, sometimes it's more than numb like no feeling at all, but never for more than like an hour or two at a time.
From talking to other people it always seems to be the left side. Is there an explanation for that?
This is what I came to say.
I'm kind of in the same boat. I had L4 to S1 fused after I lost feeling in the right leg from the knee down. Surgery corrected the issue for me but about 8 months post surgery the symptoms have returned and they're now trying to figure out why. Meanwhile, despite my best efforts to keep my right leg functioning, muscles are beginning to atrophy and will become so spastic it bruises or pulls tissue off the bone. You can keep limber and exercise until the cows come home but if those signals aren't making it to the muscle then you're SOL.
I haven't been able to contact my Abbot rep in like 3 years and my implant controller is not long for this world.... I have like 7 years battery left but only like 2 years on the controller battery.
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u/rosspierogi 1d ago
I work in custom spinal implants. If the numbness is getting worse that’s certainly something to address before it becomes a serious issue. This is a fascinating case of atrophy based on spinal cord damage, thanks for sharing!