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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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Hi all, I am new to the group and feel this group might be dealing with similar issues as me. I am currently 2 years on a waiting list for neurology and surgical team however things have deteriorated and I think I may have myelopathy, icats is also querying it however because I do not present with a medical emergency as in CES i have to wait. I am in chronic pain daily and at present dealing with a flare up of Radiculopathy.
Please see my MRI results below see what yous think. C3/C4, there is diffuse disc bulge and prominent left paracentral bulge indenting the thecal sac with mild narrowing of the left exit foramen.
At C4/C5, disc osteophyte complex indenting the spinal cord, compromising the central canal, AP diametre of the thecal sac is 8mm. There is bilateral moderate to severe narrowing of the exit foramina.
At C5/C6, there is mild loss of disc height with disc osteophyte complex indenting the thecal sac and compromising the central canal, the AP diametre of the thecal sac is 7.8 mm. There is severe narrowing of both exit foramina.
At C6/C7, disc osteophyte complex is seen indenting the thecal sac with evidence of severe narrowing of the left exit foramen and moderate in the right.
Thoracic spine:
There are multi level posterior disc bulge from T5/T6 to T7/T8 and at C6/C7 levels with no evidence of significant central canal stenosis. However, the assessment is limited due to the absence of axial images.
Lumbar spine:
At L3/L4, there is diffuse disc bulge indenting the descending L4 nerve root.
At L4/L5, there is diffuse asymmetrical disc bulge with annular fissure, indenting the descending L5 nerve roots, together with facet joint degenerative changes causing narrowing of both exit foramina and irritating the exiting L4 nerve roots.
At L5/S1, there is mild loss of height with annular fissure and broad-based posterior disc protrusion, indenting the descending S1 nerve roots.
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2 Reactions@andrea44
Ouch. I have spurs in my cervical as well with “ventral cord flattening” and when I turn my head a certain way, you can hear them grind away and it instantly gives me an ocular headache with severe electric pains from my neck to my buttocks. Very unsettling, but I’ve heard everything from “possible cord compression” to “you have absolutely no herniations in your spine whatsoever” despite having confirmed s1 compression as well.
The medical system at least where I live is an absolute disgrace. It’s pretty sad how much I’m considering spending 5k alone just to go to a Mayo Clinic facility because it’s quite clear nobody in my state will help me.
Do you have other symptoms as well? Gait issues, hand dexterity issues? Bladder and bowel? I only ask because I suffer from all of the above, and it’s frustrating as hell because I know there’s plenty of others like me, undiagnosed and scared with no help coming.
Hi@jaydeeem32 I am so sorry to hear you are suffering also 😢 it’s such a shock that people are left in this state just waiting on an emergency to take place before intervention. I suffer from back, neck , arm and leg pain with flare ups of sciatica and Radiculopathy. I have awful burning tingling sensation in my arms from shoulder to elbow only which feels like millions of ants on fire. I have headaches, off balance dizziness, left foot spasms and right hand spasms, my eyesight is blurry which only started when the rest started, I suffer from constant pulled muscle around my chest that feels like a heart attack. Over the years I have isolated incidents that have required medical attention however it was only until 3 years ago I developed the itch on my arms that left me black and blue, I continued to work then after 8 weeks of struggling and no sleep I thought I was losing my mind so I went to the GP upon assessment I was sent to A&E and they diagnosed me with Lyme disease after few weeks I was no better so got seen by physio who advised me on my balance issues and he was worried which lead to the MRI. For a period of time we thought I was presenting with symptoms of MS however a brain scan ruled this out. Maddest thing is I work for the health trust and have been blocked from returning by OH as they think my symptoms are too severe and they need to safe guard me. It’s so frustrating that I am still in limbo not really knowing what is happening. I also have significant bladder issues , the pain is chronic sometimes I am unable to move my head left or right and feel like my head is too heavy for my neck to hold.
@jaydeeem32 - I noticed that you wished to post a URL with images. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.
Was there a particularly important finding your doctor pointed out from the MRI scans?
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1 Reaction@lisalucier
I figured as much, gotta keep the forums as clean as possible otherwise it’s just bot heaven haha.
No doctor necessarily pointed it out, but actually quite the opposite. In my old scans, in my axial slices, it clearly shows 50% effacement with a compression ratio of 0.37 officially, but I got told there’s nothing compressing it. The issue is one report says I have ventral cervical cord flattening, with moderate foraminal narrowing, a herniation, and bone spurs at C5-C6, as well as congenital spinal stenosis due to being a twin (lucky me, I have it, my twin does not) in both my cervical and lumbar. I’m also diagnosed with degenerative disc disease and multilevel spondylosis in my cervical. 3 herniations flattening from C3-C6. But I’m told now there’s nothing and never was.
All of my symptoms correlate with myelopathy, but I’m told otherwise despite me ending up this way after an acute injury. It’s kind of scary because 28 is so young, which is why I feel like I’m being gaslit on it because surgery now = many more in the future. But at this point I’ve basically given up on even looking for an answer. I’ll still go see a few more neurologists, but at a certain point I’m just going to claim SSDI for my nerve root and carry on, because it’s clear to me this will only get worse, I can’t even turn my head without severe pains now
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1 ReactionEven though social security deemed me disabled as a result of my injuries from a hard fall all my neurosurgeon said to me was to take Tylenol! That was after multiple X-rays and 8 hours in an MRI for a complete spine scan from neck to my compression fracture of my L1.
All that damage has worsened and I have an appointment coming up with the neurosurgeon and neurologist next month. I hope we will start non surgical therapy soon and perhaps spine surgery if the non surgical procedures don’t work.
I don’t want surgery if it can be helped but I’m going for a Anorectal Manometry in 2 days due to chronic constipation.
I haven’t had a normal bowel movement in months except for a little here and there thanks to senna at bedtime and MiraLAX in the morning. Otherwise my bowels don’t work. My bladder is working well though.
I am not paralyzed but because of the medication I am stuck on my recliner all day for fear of a bowel accident. We’ll see what happens soon.
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