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Cervical myelopathy

Anyone been diagnosed with cervical myelopathy?

Anyone hear of delayed cervical myelopathy?  My new surgeon suggested that despite ACDF being a success for 11 months, my return of symptoms could be sort of a delay or return of cervical myelopathy although the adjacent herniated discs are only abutting the spinal cord, not compressing it.

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Comments

  • Im still trying to figure out exactly what myelopathy is to be honest, I was diagnosed with long term spinal compression, is that the same as myelopathy?

  • The technical definition of cervical myelopathy is nerve compression of the spinal cord in the neck area.  Many times, the nerve compression occurs as a nerve exits the spinal cord in the foramen (foraminal stenosis).  This is what generally causes the nerve pain down the shoulder.  Myelopathy results from spinal stenosis or narrowing of the spinal canal.  Symptoms can be problems with fine motor skills, pain or stiffness in the neck, loss of balance, and trouble walking.

    Interestingly, my original surgeon who did my ACDF surgery officially diagnosed me with "cervical radiculopathy without myelopathy".

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  • I also had ACDF i have spinal stenosis and foraminal stenosis with myelomalaciaThere was nothing said about myelopathy. All i know is this sucks, thanks for the response.

  • I am sorry about the myelomalacia.  That does suck.  Did you recently have ACDF?  What levels?  Were you able to do PT afterwards to strengthen your core?

    I developed low back issues at the end of January after a fall onto my head.  It was a train wreck waiting to happen (cyst, enlarged ligament, and bone spur from front) with a herniated disc from front compressing on a congenitally narrow canal.  My fall resulted in 2 compression fractures at T3 and T12. ER only did CT of neck and said nothing was broken and hardware intact.  My surgeon said that since neck CT was fine and I hit ground on the top of my head (thus neck was closest to impact), rest of my spine had to be fine.  He sent me away saying that it was all muscular and inflammation without even doing as much as examining me or an xray of lower back.  All that to say is that I finally got to see new neurosurgeon.  I have low back surgery scheduled in a few weeks.  But as for the neck, he said there are subtle things that could cause my issues (adjacent segment, a moderate bone spur, and non fusion at c6/7), but surgery may or may not help.  I find myself often dropping things with my left hand and there are major differences in the strength between sides.  I often reach over with my other hand to do things.  I do not want another surgery but this quality of life stinks.  I am only 52.  I used to be very active.  I even went water skiing last summer.  But now, I cannot do but maybe 25% of what I used to do.  When we asked surgeon what else it could be if it wasn't the non union or the bone spur, he suggested delayed myelopathy, which I had never heard of.  

  • I had C5/C6 done Dec 2019 started physio at the end of January and then COVID shut it down in March. Physio has started back up again and I am back at it. Hurting pretty badly right now and just had my xray done waiting on results. Neurosurgeon is scheduling another MRI, has me scared to death and regretting the surgery. How did you feel after your ACDF? Sorry to hear about your new issues, if you don't mind me asking how did you fall on your head? Like you I am only 45 and very active or was prior to surgery. Had the surgery as my spine was compressed and one major blow could have  resulted in paralysis so I choose to have the surgery, wish I didnt to be honest. Im hoping things will get better as I progress through physio and like you scared to death to have another surgery.  I find myself constantly stressed and depressed. I hope you find answers.

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  • I had ACDF C4/5, C5/6, and C6/7 in Sept 2018.  I started PT at about 3 months post-op and did it for 2 months.  I ended PT having achieved my goals.  By my 6-month check up, I was cleared to resume all activities except no contact sports, no high g forces.  I was able to regain the strength I had lost in my left hand, bicep, and tricep.  Except for less neck rotation, everything was back to "normal".  When I woke up from surgery, it was an amazing difference.  I had surgical pain, but the arm/shoulder pain was gone.  The intermittent numbness was gone.  I did have some pain when doing PT, as I was developing back the muscle strength that I had lost.  Also, when I came home from surgery, I started walking.  At first, it was just a little, like 100 feet.  But, I had a stupid catheter bag.  At the end of my 6 weeks at home, I was walking 6 miles a day, but it took about 2 hours to complete.  I was trying to do everything possible to promote a good fusion.  On rainy, drizzly days, I would put my shower collar on.  I just want to get back to the person I was at this time last year.  Symptoms returned at 11 months and it has been a journey since then.

    The fall happened because my proprioception (balance in the dark) was off.  I had H1N1 flu.  I changed positions on my bed when my pain came and had a certain way of log rolling out of bed and reversing that to get into bed.  My mattress sits about 36" high.  I sat on the edge of bed, in the dark, and leaned to my right to lay down.  Apparently I was bent too far forward and did not know.  My torso missed the mattress and as my head was lower than my hips, time slowed down.  I thought I needed to protect the neck at all costs.  I tried to rotate to the left, which would put me face forward, intending on using my hands to catch the fall.  My right hand/arm was caught up in the bed rail.  My left arm was too weak to do anything.  At first, I hit the very top of my head, and then the inside of my right knee second.  The pain was like a lightening bolt, travelling from my neck to the small of my back.  My lower earlobes then felt like they were on fire, with an intense, burning heat.  I had a pounding headache across the base of my skull, like someone took a hammer to that area.  I laid on the floor what seemed like a long time, but my husband helped me up and into a chair.  Everything hurt to move.  My neck started swelling.  So, we decided it was best to go to the ER.  At the ER, they noted left arm weakness, but they also noted left leg weakness.  Instead of checking that out, they said to follow up with my doctor.  I tried to describe the fall to my surgeon, but he said a fall from bed was "insignificant".  He told me that the CT of my neck showed that my discs were fine. He said that the new CT showed that I was fully fused.  He offered for me to go back to PT, he released me to try a chiropractor, said to try acupuncture, he examined my left arm, but not my lower extremities.  He did not schedule anymore followups.  It was the chiropractor who said he would not touch me without an MRI.  My last MRI had been pre-surgery.  That MRI showed abnormalities at T3 and recommended a thoracic MRI.  So, chiropractor ordered thoracic and lumbar MRI.  I had pathology in all three regions.  So, I went to an out of network neurosurgeon that my chiropractor recommended.  That was the end of February.  That neurosurgeon said I needed low back surgery.  He said to try an injection in the neck and possibly an injection or something called kyphoplasty at T12.  It felt like I had a hatchet in my back at T12, but I have a herniated disc at T11/T12.  I went to PT and she could not do much because I was still in a great deal of pain, with multiple herniations, the two fractures, and the severely pinched spinal canal in my L3/L4.  She gave me some exercises to try for my lower back.  I had already done 4 months of PT from Sept to December and "graduated" from PT having NOT met my PT goals.  She was pushing me to get a 2nd opinion because we did some things in PT that indicated a pinched nerve.  I had an EMG back in October that indicated chronic C7 radiculopathy and mild cubital tunnel.  To appease my surgeon so that he would continue to look for answers for my neck issues, I ended up having cubittal tunnel and carpal tunnel surgery in mid February.  See, after getting the EMG results, my surgeon said that the cubittal tunnel issues could be the reason for my issues and said I had to get that resolved before he would order any kind of steroid injection.  The hand surgeon said that surgery would likely help with the hand issues, but not with the tricep weakness.  I was trying to take the right steps and do what my doc put in front of me as diagnosis and treatment.  After getting the MRI and having my elbow/hand surgery, I went back to my PCP to start the process of changing surgeons within my HMO.  Then, COVID delayed everything.  I have since gotten two injections, one in neck and one in low back.  The one at C7 was a Selective Nerve Root Block.  For 3 hours, my pain was a 2.  It was blissful.  Then, the short acting lidocaine wore off and the steroids did nothing.  As for the low back, it helped reduce pain about 25%, which wasn't much.  But when the lidocaine wore off, pain returned.  I also had an EMG of my left leg, which revealed L4 nerve compression.  I have quad weakness and foot drop.  So, each week that goes by, I get a little worse.  In the low back, the average depth of the spinal canal is 20 mm.  My "normal" canal is  12 mm.  Where I have the spinal stenosis at L3/L4, it is 5.12 mm.  So, I know I need that surgically repaired.  I have known since the end of February.  I have just been stuck in this nightmare of changing docs, COVID delays, and then the new doc has been extremely booked.

    I hope that you find the answers.  Don't be afraid of getting or needing the MRI.  It will get you answers faster.  If something is going on, then you can face it head on and address it.  To me, not knowing and letting my brain follow down the "what if" rabbit trails is so much worse.  At least in knowing what the pathology is, you can make an educated treatment plan.  When I have a plan, I feel like I am back in the driver's seat instead of the victim.  So, I wish that you get some answers, that those answers give you peace, and that it does not require a surgical revision. As for the emotional side of things, chronic pain changes you.  As much as you might try to let it not affect you, it does.  I am grumpier and less patient with my teenagers.  I thought I wasn't, but recently took a good look in the mirror.  Yes, I was less patient with them.

  • wow that is a lot going on and thank you for sharing your story with me. Here in Canada it is a long wait to see a neurosurgeon, it took me two years to see one of the best in the area, I guess my case wasn't significant enough, don't even get me started on how long it takes to get an MRI. I am in Niagara Falls Canada and have already reached out to the Buffalo MRI Clinic that caters to Canadians because there is no way i can wait 3-4 months for any answers.  Sure are health care is free well sorta as we pay lots of taxes for it but the wait times are horrendous to get any type of specialty help. I actually had given up on seeing a neurosurgeon and then suddenly i got the call. I wish I didn't to be honest as I was doing alright prior to the surgery. Sure had some neck mobility problems some pain here and there and some numbness but nothing to what I am feeling now. Long term spinal compression didn't sound good to me and the imaging showing the disc pushing right up against my deformed spinal cord didn't help. I ma currently waiting to hear back from my neurosurgeon in regards to my worsening symptoms.  Not  sure what to do next sit at home on ice and heat and continue with physio and hope for the best. Im lucky to have a job that caters to me and I will always have a job, perhaps not the same job as the one I am in can be quite physical at times dependence on the situation. Im thankful to have that but am terrified as to what is the next step. I figured a single level would be a piece of cake and Id be back to work in 6 months. Guess not.

  • when you said the symptoms returned after 11 months, was that because of the fall or did they return out of the blue?

  • Yikes....2 years.  I was complaining about 4 months.  I am sorry your symptoms are getting worse.  If the disc was compressing on your cord (and not just into your spinal fluid), then you needed to have the surgery or risk permanent nerve damage.  That is my fear that I have waited too long and damage may become permanent.  My return of neck symptoms came on suddenly, without any kind of provocation that I could think of.  One day, I woke up with a sore shoulder and pain radiating down my arm.  I thought that I had slept wrong on my shoulder.  The pain started out as a 3, but then got to a 4 and started waking me up at night.  Within 2 weeks, I noticed a reduced strength, intermittent pins and needles and dropping things (like a mug full of coffee).  That lack of strength became more pronounced.  I went to my year follow up with my surgeon and he ordered a CT myelogram.  That is where they put dye into the epidural space and then get CT imaging....it is quite a painful process.  That showed that I was fully fused at c4/5 and C5/6, but was only "spot welded" in a tiny place on C6/7 according to my surgeon.  The radiologist called a "possible, small area of fusion, but non fused across most of the disc space". Because the spinal fluid is lit up, you can see if it is moved around a herniated disc (though you cannot see the disc directly).  My surgeon said that there was no pinched area and that I must have over-stretched my nerve weeks before from water skiing.  He prescribed PT, massages, heat, ice, accupuncture.  He said it would get better in about a month.  When it did not, I contacted his office again and he ordered the EMG.  The neurologist that did the EMG said that elbow was mild and did not warrant surgery.  So, he prescribed an elbow brace to be worn when sleeping and while at the computer.  The computer was not an issue because my keyboard is already pushed away and requires a relatively straight elbow.  However, at night, the straight arm was like a pendulum for my shoulder.  My pain soared to a 6 sometimes 7.  It was constant.  I went back for a 3-month followup to surgeon.  That is when he said I had to get elbow resolved and off the table first.  So, a month later, I saw a hand surgeon.  He gave me a steroid shot in elbow, which did not do much.  I came back a week later, and he gave me a steroid shot in the outside of the wrist where the ulnar nerve passes through the Guyon canal.    It helped, so we scheduled surgery.  He said he could do elbow or not do elbow.  Because I wanted to leave no stone unturned for my spine surgeon, I decided to include the elbow in the surgery.  My fall happened just a few weeks before my elbow/wrist surgery.  I actually saw my surgeon for another 3-month follow up just a few days before my surgery.  I asked him if he still thought it necessary, and he said "That is the only thing that is going to fix your hand issues."  When the hand surgeon went in, he said the elbow was one of the worst he had seen.  The nerve and surrounding tissues were inflamed, but the nerve was trapped in a bunch of scar tissue.  There was a pool of blood, likely happened during my fall, in the elbow.  The wrist and carpal tunnel were also severe, but what he expected.  Even though the carpal tunnel showed to be normal in the EMG, it had been entrapped so long that the nerve was hourglass shaped.  When I woke up, the hand surgeon said I am going to be so happy with the results that I am going to want the other hand done.  I have seen some slight improvement, but I now have pain in my wrist,elbow, and other fingers that I did not have before.  If I had the opportunity to do again,  I would not have done the elbow/wrist surgery.  But, I thought that stood in the way of paying attention to my neck issues and being committed to finding a solution.  As for the low back, it was a train wreck waiting to happen.  I think the fall caused the disc to herniate or herniate more which pushed the stenosis to the point of causing symptoms.  As for the question of whether I am fused or not, my original surgeon seems to think I am.  The ER radiologist did not address it in his report.  He was only looking for broken hardware or broken bones.  I hired a neuroradiologist to read the CT from the injury, he said there was not substantial fusion from the previous CT with myelogram.  The neurosurgeon I saw at end of February said I was not fused.  The new neurosurgeon on my insurance plan that I recently saw said I was not fused.  So, I wonder if this lack of fusion is causing my issues or not.  Or is it the moderate bone spur at the C7 foramen that is there.  MRI's and CTs are done when laying down.  I watched a presentation by a doc talking about doing the imaging in a sitting or standing position because gravity can change things.  So, that's my whole journey.


  • wow that's quite a journey, you must be a strong willed individual. In regards to my compression it was past the spinal fluid and compressing the cord. MRI stated loss of both anterior and posterior spinal fluid at this level with a deformed spinal cord with myeolomylacia, sever stenosis, sever forminal stenosis.. Neurosurgeon stated based on the Snake Eye Appearance on the MRI shows long term compression (If your not familiar with SEA  its interesting to read). Had my first MRI 2016 and my second 2019 and not much change. I have been attending physiotherapy 2x week for approximately 3 years and counting, good thing I have excellent coverage through work. Physio stated that if it hasnt improved in three years it probably wouldn't. Didn't have a lot of pain prior to surgery just loss of neck mobility and radiating pain into shoulder, arm and hand. The thought of paralysis or long term nerve damage prompted me as nerve pain is the worst. I guess I figured how bad could one level be? I guess I guessed wrong. Im lucky to have a excellent physiotherapist who is well versed in ACDF treatment who sees me 3x a week starting next week so here is hoping. Just terrified I have another issue. After hearing your journey I really shouldn't complain I suppose. I'd think a non fusion i your case could possibly be the issue as I have been doing  a lot of research since the surgery and return of symptoms. I'd definitely look into that if it were me. The thought of being non fused would not sit well with me.  Your strength is an inspiration, thank you.

  • Kand & decirp - I encourage both of you to keep fighting for proper diagnostics and interventional treatment, be it surgery or anything else.  You live in your body and it sounds like both of you have been listening to your body. 

    Please for your sake, do not take no for an answer.  When you are told, nothing found, that is all it means, nothing found.  I got kicked around in the U.S. medical system for 21 years with increasing cervical pain and increasing lose of motor skills in both arms and legs.  I had a string of incompetent surgeons/doctors and fraud by an insurance company, so by the time I had the third ACDF surgery in 2018 that finally stabilized my cervical spine, I had permanent cervical spinal cord surgery.  Now I working with a functional neurosurgeon that implanted an SCS device last October.  My error was that I actually believed that the surgeons were telling me, but they were missing my cervical structural failures.  Between my second and third ACDF, I actually had ten second opinions. 

    I've posted this borrowed comment in other threads, but I think it is appropriate here:

    Do your due diligence, trust you know your body and question everything if it does not fit.  Advocate for yourself and you will be surprised what will be revealed trusting your body and instinct.

  • That’s good advice stiffneck thanks 

  • Stiffneck and decirp,

    Thank you for your encouragement and inspiration.  We must keep fighting for answers and resolution.  And when you feel you cannot fight another minute, take solace from those around you.  Stiffneck, you have been such a blessing and encouragement to me since I came back here in August looking for answers and anxious to hear other people's stories when symptoms returned.  It is a hard pill to swallow when you like a surgeon and have developed a good connection, only to feel like he's written you off when things did not go according to text book plans. Stiffneck, I pray that your SCS gets fine tuned and settled so that you can enjoy a decent quality of life.  Decirp, good luck with finding out what is going on.  It sounds like you have a good physical therapist that can help you navigate things.

  • So I had my xray and still awaiting to hear back as I had the xray locallly and my neurosurgeon is about 45 mins away.  Pain tends to move around on me, lots of the time between the shoulder blades mid thoarcic area, other times behind the left shoulder blade and trap. Numbness in arm and hand most times but other times not and the level of pain changes. Been going to physio which I believe has helped Im seeing in two to three times a week.  Mentally struggling badly but I guess that is to be expected  when you hope for certain results but get different. I am thankful to have a very supportive job that I will always have no matter what. Anyways hope your doing well and getting some answers. COVID things still has things moving at a snails pace.

  • decirp, are you still getting an MRI?  Let us know how the xray goes.  I think the constant pain messes with your head.  You try to be nice and even sometimes the way you say things doesn't come across as you intended because the inflections are not right.  I get you on the mental side.  I am so done with this stuff.  And COVID is shutting down my state again.  So, my surgery could be in jeopardy of not happening.

  • Kand, yes I am still getting an MRI but they are still sticking to emergency MRI only and still have to re book the ones that were cancelled back in March when COVID hit so will be a long wait I assume. I intend to pay the $700 Canadian and go across the border (whenever it opens) to Buffalo to get an MRI. They have a MRI center there that caters to us Canadians as the wait is so long here. On a good day its minimum three month wait. Sorry to hear your surgery is in jeopardy of not happening as I am sure that is frustrating. Ill definitely keep you posted on my x-ray result as I am anxiously waiting for it, last time I spoke with surgeon he stated my x-ray in January looked great. Here's hoping I'm just taking longer to heal due to the long term cord compression.

  • So spoke to the neuro assistant and she told me the doctor looked at the imaging and set everything looked good and fusing nicely, hardware looks good. Says he’s a bit perplexed by my symptons but that’s what the MRI is for I suppose. Cord compression or not I wish I hadn’t done it and rolled the dice .... 

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