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Concerned about Cervical Myelopathy
I’m not posting this to diagnose myself or claim I know more than doctors. I’m posting because my body has changed drastically, and I’m trying to understand whether my symptoms could reasonably match what appears on my MRI. I’ve heard numerous different things from ER doctors, who all say it’s nothing, but something is really going on with me.
I suffered an acute injury late last year which left me in the hospital for 2 weeks, one week in 2 different hospitals. I logged something heavy, hurt my back I guess, because after a few hours my back started severely hurting, then I lost feeling of my legs while driving and had to stop and get transported to the ER, which was the last day I was able to walk. Before this, I was not in a wheelchair. I was not dealing with progressive weakness, major balance issues, urinary retention, bowel changes, hand weakness, or leg shaking when trying to use my muscles.
In the hospital, I was on a foley for 2 weeks, and didn’t pass a bowel movement for 9 days despite constant meals and laxatives. Anyways- the second hospital came to the conclusion that I have a herniated L5-S1 causing S1 nerve compression and mass effect on it, and a theory of FND vs Spinal Shock, due to the numbness and severe weakness in my legs that make me tremor when I extend my knee flexors.
Keep in mind, my symptoms are not distractable whatsoever. My own wife and entire family has had to deal with my symptoms, unfortunately. I’m only a 28 year old male. I am also diagnosed with multilevel spondylosis, ventral cord flattening, 3 herniations from C3-C6, degenerative disc disease, and congenital spinal stenosis in my lumbar and cervical.
Recently I twisted my neck just sitting in my wheelchair looking around and heard a crack in my neck, leading me to another ER visit, leading to the same old “mild stenosis” talk, and I look at the chart and it essentially says “unless huge lesion is found, discharge tomorrow.”
Now I’m not saying I’m fully paralyzed, I’ve just become progressively weaker as the last 7 months have came and went, and now it’s happening in my left arm, where my hand shakes when I extend my arms out, my grip strength is documented 3/5, and I can’t even pick up a plate of food in it with my arm extended because it will fall. I’m honestly terrified of what’s happening to my body, and nobody can give me a clear answer as to why I’m feeling this way.
My main symptoms are as of today:
* weakness in my legs and left arm, with some weakness in my right arm
* poor balance and wheelchair use due to fall risk
* leg shaking/jerking when extending my knees or actively using my leg, almost exclusively my knee extenders
* hand weakness/dexterity issues and dropping things
*Numbness to soft and temperature sensation below my umbilicus, as well as my outer right forearm to my left pinky
*Pins and needles in my toes and legs, as well as occasionally both arms, can come and go
*random electric pains running down my neck, sometimes appearing in my ribs, shoulder blades, hands, as well as my legs
* urinary retention that can last a few days
* occasional urinary accidents
* major bowel changes, including constipation and urgency issues
* neck/back pain with nerve symptoms
*documented positive hoffmans sign
It scares me most because nobody has been able to explain these things to me. Nobody has diagnosed me with anything to do with my spinal cord, and my symptoms every week seem to be settling, as if the pain will stop, then it comes rushing back in with new numbness or weakness. They say S1 compression can’t cause all of these issues, and I believe it. So what is going on.
On one cervical MRI image, the spinal cord appears flattened, with measurements around 5.66 mm AP and 14.15 mm transverse, giving a cord compression ratio of about 0.40. On an older MRI image, the bright CSF space around the cord also appears reduced or absent at one level. I haven’t measured it in the DICOM viewer yet, but I’m sure just based on the size it’s not good.
I understand screenshots are not the same as a full MRI review, and I’m not asking for a diagnosis from a photo. But I am wondering:
Could this degree of cord flattening or CSF effacement be clinically meaningful when combined with these symptoms?
The questions I’m trying to understand are:
* Does this look like true cord flattening/compression?
* Is a compression ratio around 0.40 significant?
* Could this relate to balance problems, weakness, hand issues, or bladder/bowel changes?
* Could different MRI studies look different because of slice angle, neck position, or technique?
* What should I specifically ask a spine surgeon or neurologist to look for?
Again, I’m not claiming my cord is “cut off” or that I’m fully paralyzed. I can move my legs. But I was not like this before, and the changes are scary.
Any thoughtful input on the MRI appearance, symptoms, or questions to ask at my appointment would be appreciated.
If anyone else has other experiences hearing “mild” but feeling “major” please let me know. Even my own cat feels like it’s a 300lbs deadlift. It’s a 10lbs cat.
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I have a link to a ton of MRI slices but I don’t know how to post photos here nor will it let me post my link. If anyone could direct me
You remind me of my situation.
I fell hard last year. Went to a neurosurgeon and neurologist who took several X-rays and a total spine MRI. 8 hours in an MRI.
After everything was done I went to my follow up and my compression fractured L1 was confirmed with several damaged vertebrae in the lumbar spine area. Also some damaged T vertebrae and c 4 c 5 c 6 damage.
Some spondylosis and much nerve damage. The symptoms were mild then but a year later I am a wreck. Pins and needles under my feet, weak legs arm and shoulder pain and spasms of my right upper arm muscles.
Most of my muscles are in pain and difficult to move. Neurogenic bowel and constipation for months having to take senna at bedtime and MiraLAX in the morning to get my bowels to move. And even then a movement is not guaranteed.
I can’t turn my head to the right without intense pain. I can’t reach out to grab something with my right arm. The upper arm muscles won’t let me unless I put up with the pain.
My spine institute I went to was dismissive and offered that I take Tylenol. That was it.
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1 Reaction@andytheman
I’m sorry to hear all of that. I just don’t understand because I flip through my own MRI axial scans in my cervical, and I have 50% of my CSF at the anterior effaced, and my cord is quite literally bean shaped with a .4 compression ratio.
Every single surgeon I’ve seen tells me I don’t have myelopathy, because there’s no lesion or signal- which is not relevant to early cord compression, despite all evidence leading to the contrary.
Just like you, I take softeners and Flomax because if not, I’ll be backed up for a week- despite having no issues going every single day before my injury.
The last part is, being told “there’s no surgical target, but if a neurologist signs off that you may have cord compression, I’d consider surgery then” is incredibly frustrating considering my quality of life has deteriorated to the point where I’m getting desperate for an answer. I don’t believe I have done rare genetic mutation, as this was all onset by a single injury.
yeah man, if you are in a chair and cannot get out and have any visible cord deformation described on a magnet study then there's nothing mild about your uncle myelo. And any surgeon or physiatrist that diagnoses off an image while you cannot walk is a quack. everyone is different, some MRIs show the most gnarly osteo topography and cord linked all around the spurs and fellow can be asymptomatic. Or a torg ratio of. 4 by itself without protrusions often brings neurological dysfunction. (which is about a quarter of the fluid buffer space your average canal has. the MRI is a tool and a picture, your clinical presentation is you. Make sure your Dr is treating the right indicator. I'm 44 and got my canal narrowed in several locations at a chiropractor appointment just over two years ago have a ratio of .8 aswell as a physiology non-conducive to intervention of a successful nature. the cord stuff doesn't take long to be permanent, get educated and get opinions if you want a chance to not have to get used to the decline. she is a progressive sort.
I have Mylopathy symptoms, handwriting has gotten bad, i drop things, i walk unbalanced. I have headaches, and some radiculopathy in the c6-7 area. My MRI shows moderate to severe compression at. C3-4 and moderate at C6-7. On exam i am weak, i have a positive hoffmans and clonus, numb hands and feet. I have a previous fusion at C4-6 which is solid. I have only had these symptoms since April2nd when PT extended my neck snd did deep manual therapy and the question is do we wait to see if symptoms resolve or do we move ahead with ACDF of the two affected levels. My questions are will my symptoms be permanent if we don’t move ahead? Or, how long should i wait? The surgeon is presenting my case to his colleagues at a spine team meeting this coming Monday and more input will be welcomed.
What both of you have said is Greek to me. I don’t know anything about the degree of damage I have other than the MRI showing a compression fracture of my L1 and damage to some other L and T and C 4-5-6 vertebrae and substantial nerve damage and pain.
I have limited neck movement and my lower back and legs are causing pain and weakness in my both legs. I’m scheduled for an appointment with my neurosurgeon to discuss what exactly is it that I have. I am not a doctor and cannot understand what most of the initials mean.
I am practically permanently constipated. Without the Senna at bedtime and MiraLAX in the morning I would not be able to go and when I do go it’s barely there. My GI doctor thinks that I am bound.
Ironically even though I am constipated I have a constant urge to go. Signals from my affected nerves are not reaching my brain. When I’m feeling cold I cannot shiver as the signal to shiver is either twisted or pinched and doesn’t reach the area of my brain that signals me to shiver. I have to wrap myself up with a blanket.
Many of my nerve signals are not reaching my brain. I have a neurogenic bowel and am due for a neurogenic Manometry procedure. I am a total wreck and in pain everywhere and I believe that I also have neuropathy due to all my major muscle groups, arms , legs , torso , back and neck muscle pain.
I feel like I am at the end of my lifespan as I am 72 years old and also many tests that can effect any bleeding has to be approved by my cardiovascular surgeon as I’m on Coumadin ( a blood thinner) and bleed easily. I will take it one day at a time and advocate for myself and not give up.
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4 Reactions@slarty
The worse part is, I clearly have 50% of my CSF specifically at C5-C6 gone, and it’s compressed into a bean like shape, while my damaged levels above are flattened, it’s still got its CSF around it. At C5-C6 though, it’s completely gone at the bottom towards the anterior. I got told by the surgeon that I’m “barking up the wrong tree” and to see a neurologist, then gives me an anecdote about how someone came in two years ago with symptoms like mine, and he died of ALS two years later.
Goes to say my spine isn’t okay, but it’s probably not all of my issues and that he could operate but there’s no telling it’d fix me or not. I had to explain I already have deficits. My life is already a wreck. I lost my job. Had my car repossessed. The works. And 8 months later I’m no closer to an answer than when my injury occurred. They refuse to see a 28 year old who needs surgery now in 2026, but let’s flashback to even two decades ago, they used to give everyone back surgery, even for minor herniations.
I refuse to believe it’s not some form of SCI as all of my symptoms point to exactly that, and everybody refuses to hear me on it. I had the surgeon refuse to even look at my axial view, just looked at the saggital and said it wasn’t so bad, then shows me another patients mri (with their name and DOB mind you) and goes “see, see how catastrophic it is?” Well gee that’s nice doc, first of all you’re breaking HIPPAA, second of all, I’ve done my research. I know more about the spine than the average person should ever know. There’s plenty of medical documentation detailing minor cord compression with big symptoms. But nobody hears me.
They believe I have FND, but it can’t be the case because I’m not distractable. My “shakiness” when I extend my knees isn’t something that gets distracted away. It happens when I’m sleeping and move, for example.
I don’t know what else to do, but I’m glad I’m not alone. I hope we all find our answers eventually n
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2 Reactions@nancyjo1490
I’m not an expert by any means, but from what I read up on about myelopathy, you need it corrected as soon as possible or it will be permanent. Usually people see reduction and remission of their symptoms, some do not. It all just depends on your hardware and how your body decides to respond, and what is temporarily damaged vs permanent. If I had the choice, even at my age of 28, I would get the surgery as soon as possible. I never knew how much I would miss working, driving, standing in line for an hour for ice cream, etc, until I lost my ability to do those things.
I hope you have a good team behind you, and I pray you make a miraculous comeback.
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2 Reactions@andytheman
That’s so brutal. I only know all of the acronyms at this point because I really only have myself in my own corner. I’ve seen over 15 neurologists and surgeons over the past year, everyone believes I have FND because “the mri doesn’t correlate with the degree of damage” despite me arguing that, I’m not claiming I’m fully paralyzed. I’m not even close. I just have severe weakness in my legs and now my left arm, with shooting electric pains from my neck down. It’s so damn frustrating to be in pain, not know why, while knowing nobody else knows why either.
.37 compression ratio, apparently a poor prognosis in the outcome in cervical myelopathy and decompression surgery.
I have mostly the same symptoms as you, I too am on Sennacote, taking it 3x a day, and I still only manage to go about once a week, if I’m lucky. I used to have IBS issues, I mean, I used to have to use customer bathrooms at work because I’d be crapping my pants if not. But like you, I also have some weird urgency thing going on as well, where I can’t tell if I do or don’t, and then as soon as it hits, it’s immediate. Whether it’s bowels or bladder. It’s truly mind boggling. I pray for you my man. I’m only 28, I hope we both find our answers soon, young or elder.
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1 Reaction@jaydeeem32 i am leaning towards doing it ASAP as my symptoms are problematic but i really and nervous about losing so much range of motion in my neck. But I am 60 and don’t want to live like this either
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