Cervical myelopathy and cortical alterations

@dukedevil
I also have degenerative cervical myelopathy.

How long have you had symptoms and how long did it take to get properly diagnosed?

What are your current symptoms in addition to speech/cognitive changes?

I was misdiagnosed for over 5 years and even called a hypochondriac by one doctor (fired her). DCM causes many symptoms and it is hard to properly diagnose. I had symptoms of daily headaches, tinnitus in ears, hearing loss, neck/shoulder/shoulder blade pain/tightness/knots in muscles, slurring of speech and swallowing issues at times, difficulty concentrating/brain fog/memory issues, arm/hand weakness, dropped things and handwriting got much worse, bladder control issues, balance off and dizzy, weakness in legs and a heaviness in legs like I was wearing cement boots when trying to walk, fell a couple times, etc.

After having ACDF fusion surgery on c5-c6, many symptoms improved right after surgery with decompression of my spinal cord. I have some residual shoulder/arm/hand weakness and balance issues which may be permanent. I have some returning symptoms due to a new herniated disc at c6-c7 and having surgery next week.

I also have a congenitally narrow spinal canal and small fiber neuropathy so this adds to my neurological “fun.” 😉

@ dlydailyhope I first noticed stiffness in my neck with no pain in 2017, but it was in March 2024 when I began to develop radiculopathy on the left side of my neck that produces tingling down to my shoulder and upper arm. That is when I was referred to a spine specialist to evaluate my condition. I spent the next six months going through a series of MRIs of my brain and spine, as well as more x-rays, CTs and neurological tests. It wasn’t until the end of 2024 that a definitive diagnosis of severe cervical myelopathy was made.

Aside from the radiculopathy noted in March 2024, I really didn’t experience any axial neck pain. But I didn’t begin to experience some neurological deficits, such as reduced fine motor ability in my hands and fingers, numbness in my fingers and feet, general weakness in my extremities, gait disturbance and imbalance, and frequent urination. In March 2025, axial neck pain on my left side has also appeared. The previously mentioned speech and cognitive issues are new issues of the past month.

I have consulted and interviewed 4 different spine surgeons, and am going with Dr. John Rhee at Emory because of his extensive credentials in cervical spine surgery and research, as well as his level of empathy and superior patient management skills. He is a recent president of the Cervical Spine Research Society.

i had ACDF c4-c7 i think. 5 years ago. got a little better for a year. then regressed. i struggle to walk with a can now and have pain most days. they have no explaination why i got worse after they fixed the compression (doctor said i would never be 100% but i got to like 75%. now like 50%)

@scottd7
Do you know if your spinal cord was injured/flattened and compressed before you had surgery? How long did you have symptoms before surgery and what symptoms did you have pre-surgery?

Have you had a recent MRI of your cervical and lumbar spine to see if you have new compression of your spinal cord/nerve roots? Have you gone to a neurologist for EMG/nerve conduction studies of upper and lower limbs?

My understanding is that with fusion, you are at risk for adjacent segment issues with vertebrae above and below the fusion section. With normal aging and continued degeneration, you may have new disc herniations and/or bone spurs. The alignment of your spine may have shifted.

Have you reviewed all of your MRI reports yourself or had a loved one help you look at everything? It may be good to see a new orthopedic spine specialist/surgeon for 2nd and 3rd opinions.

Are you being cared for by a pain management specialist and are you getting physical therapy?

If your spinal cord and nerve roots have been injured due to long term cord/nerve root compression/flattening, central/peripheral nervous system issues may worsen over time and cause miscommunication between brain and body/organs. This includes pain signals.

Hello ... My name is Jan and I've been diagnosed with cervical myelopathy. Now that I look back, my symptoms started 2 years ago with slight left arm weakness and didn't really think anything was wrong. Long story short,
On 11-26-2025 I had surgery at UCSD and I am now recovering from cervical 3 posterior laminectomy and cervical 3-6 fusion with instrumentation. The surgery went well, I'm recovering better than I thought I would. The incision is healing nicely and I can move my head left, right, up, down more than I thought I would. BUT, I am still suffering from extreme left sided muscle strength, legs are very weak and my right leg just gave out the other day. I also noticed prior surgery and now that I am really having a bit of a time with words. Example, I am talking a sentence and I want to say the word, "computer printer" and what comes out is, "the paper, you know the machine, my office...." And then I'll finally say what I meant to say. It's getting embarrassing and really frustrates me. I just get a lot of fog in my brain. I can't walk well because of balance, I had to lean against the wall because I thought I was going to pass out, when I lay down and turn over on my right side , I have a moment of feeling dizzy. I fell in the backyard yesterday when I thought I could jump up a very small hill to pull a weed out. NOPE....you would have thought it was Mount Everest and down I went. I'm mad at myself and hope no one saw me fall. It was soft dirt and I was able to get up. My mind says, DO IT and my body says, NO WAY. It's just another test to prove that I'm not well. I'm 68yrs old and I'm fighting to win and will never surrender. Apparently cervical myelopathy is hideously slow in progression. And I may not do well in the next 10 years and I don't know if this disease will get so bad that I'll lose my ability to control anything. The surgery is hopefully going to stop the progression and after I just got clearance to start physical therapy this week. During this journey along the way I had MRI's , CT's, X-rays etc. The tests also show that I have a 4.3. aortic descending aneurysm, a lot of white spots on the brain, thyroid nodule, and low oxygen saturation (using a CPAP for many years) and diabetes. I brought my A1c down from 8.0 to 6.5 which is now pre diabetic. There's a lot going on. I read everything on Google to see what I can find out about Cervical Myelopathy and my best wish is that it will not progress. The truth is it's progressed ALOT but not in the right direction. I will stay with the PT because that's my only hope. Scott talked about "miscommunication" with my body and movement. My head tells me to walk and not trip over the rock that I see ahead of me. I still trip over it and it feels more like a
boulder that I was unable to judge correctly. I hope I'm making sense! I'm scared that I'm going to have a bad fall. I know I probably need a walker which I inherited from my Mom who recently passed away. It's kind of like feeling defeated and yes my ego tells me just walk slower and be more careful. It just doesn't work that way unfortunately. Thanks for listening!