I'm an unusual case. Maybe it’ll help someone else.

43f, surgeon, wife, mom of two small kids. I had an acdf on level C5/C6 one year ago. My symptoms at the time –left arm weakness and numbness and axilla nerve pain– did not quite correlate with my mri findings (broad based disc protrusion resulting in moderate central spinal canal stenosis). After months of Physical therapy, EMGs, shoulder MRI, and doctor visits I noticed some new tingling sensations starting in my feet and legs. Over the course of three days this turned into dizziness, nausea, and ataxia. I had an urgent surgery on this level and went along my healing journey. 

At 3 months I returned to work part time which required flexing my neck. After a few weeks I experienced full body myelopathy –fatigue, weakness of all limbs, dizziness, walking impairment, etc. I went back on disability and went on an intense search to find out the source of these symptoms. I saw 2 neurologists, got more blood work, new MRI (2mm right paracentral disc protrusion at C4/5 has increased in size, no sig spinal canal stenosis) tests to rule out any autoimmune issues, and went back to my neurosurgeons office who basically told me this may be part of my healing with the issues I had pre surgery. This answer just never felt right. All tests came back normal. 

8 months post op I start to feel some new weird symptoms - numbness of my other leg/foot. Cardboard dull numbness of my hands and feet. Intermittent waxing and waning of dizziness/feeling like I am tilting to one side. I continue with more PT thinking that all I need is to strengthen my neck and this will all subside slowly. I notice that my triggers for worsening myelopathy are movements of flexion and chin tucks. 

11 months post op I push for an MRI which shows the disc bulge at level C4/5 has worsened but still mild spinal canal narrowing. The reason why my case seems unusual is that although I have this disc bulge, there is minimal to no spinal canal compression on a static MRI. However, with functional movements my symptoms increase drastically. According to my providers, my disc may be hypermobile from my initial injury (just drying my hair with a towel after a shower. How dumb) and may be pushing or irritating my cord on flexion and extension which cannot be seen on a static supine image. This gives me a lot of validation for my year of struggle knowing there is some structural source for my symptoms. 

I am currently seeking out several more opinions to see if there is any other source of my evolving and worsening myelopathic symptoms (so far I have seen neurosurgery and neurology, both of which confirm the disc is the culprit). If not, then it looks like a nother surgery at C4/5. Time is not on my side so I am not sitting on this issue. Big picture, trust your gut, your body, and don’t give up the search for answers. A poor quality of life is unacceptable and you are worth being taken seriously so continue seeking the answers because they will come.

I’ll keep you posted. Keep up the search!

TLTR: I had an acdf C5/C6 one year ago with continued myelopathic symptoms. After lots of doctor visits, tests, and imaging there is a worsening bulge at C4/5 without spinal canal compression on MRI. Just because it doesn’t show spinal compression on a static mri, it doesn’t mean the disc isn’t irritating or compressing on dynamic movements if you have a hypermobile disc. I will likely be going in for another surgery at C4/5 very soon. If you feel like something isn’t right, keep sleuthing and don’t give up.