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Problems getting diagnosed
I have an odd issue that I have been dealing with since February of 2023. I have been about everywhere, and I can't get any straight answers. I hope someone can relate and help out.
Back story I had a complete disc replacement in 2019 in my neck at the C5-C6 level from a large disc herniation. I had issues after the surgery that progressively gotten worse and came to a head in 2023.
What happens is with certain movement or sitting positions I will get muscle tightness at the base of the front of my neck, and it will spread to my chest and up my neck. I will feel like I am being chocked. I will get numbness and tingling in my right arm and fingers, I will drop things at times from my right hand, I will have shoulder soreness and pain, and I will get a stabbing pain in my neck. I will also have balance issues at times (multiple times a week)
This is what my MRI showed.
C5-C6 Mild Right unconvertable joint disease, right sided osseous (bone spur) and foraminal stenosis.
C6-C7 Disc bulge, Bilateral facet arthropathy, moderate left and right uncovertebral joint disease, Left and right osseous neural foraminal stenosis.
I look these up on reputable web sites (Not Dr. google LOL) and I find these issues can cause my symptoms.
What I am running into is being told it's all in my head and its Functional Neurological Disorder.
Has anyone else had this same issue/experience?
I have been to several doctors at University of Nebraska, Mayo clinic, etc.
Please help. Thank you!
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@greenpintail
Your symptoms sound like degenerative cervical myelopathy spinal cord compression injury with certain movements/neck positions. I have this. I had ACDF surgery in 2022 on c5-c6. They needed to remove bone spurs and my disc and fuse/put in hardware to stabilize my spine and decompress my spinal cord. I need to have c6-c7 done soon due to a herniated disc that has gone into my spinal canal and makes the space very narrow (already have congenital spinal stenosis and the disc has made the space only 8mm for my spinal cord when average space is 13-15mm).
Did they fuse or only replace your disc with an artificial disc? Your symptoms are not in your head, they are in your neck. I was misdiagnosed for over 5 years and made to feel like a hypochondriac by some doctors. I finally saw a 4th orthopedic spine surgeon who immediately diagnosed me with cervical myelopathy after reviewing MRIs, symptoms, reflexes, walking gait, clinical exam, etc. He recommended surgery asap because your spinal cord can be permanently injured where symptoms would not ever get better. At this point of my diagnosis, I was at a severe level of progression of spinal cord compression. I had neck/shoulder pain/knots in shoulder blades, daily headaches, arm/hand weakness (dropped things all the time and handwriting got really bad…had really good handwriting prior to this), bladder control issues, walking/balance issues (legs felt like I was wearing cement boots and I felt like I was walking in slow motion). This was when I was in my early 50s (felt like I was in my 70s-80s). I am now in my mid 50s.
You would benefit from seeing a few different, highly rated by patients orthopedic spine specialists/surgeons for their opinions. Don’t waste time with their physician assistants and see the surgeon. Go to them as if you are addressing your symptoms for the first time and don’t tell them about your interactions with other doctors. Just send them your prior imaging and bring a list of all of your current symptoms and questions. See what they say about your condition.
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2 Reactions@greenpintail
What types of specialists have you seen? Have you been to a neurologist to have evaluation and EMG/nerve conduction studies of upper and lower limbs? This can detect if you have spinal nerve root compression causing radiculopathy to your arms/hands, legs/feet. It can also diagnose if you have carpal tunnel syndrome.
My diagnosis of cervical and lumbar spinal stenosis, degenerative disc disease, cervical myelopathy, neurogenic claudication, small fiber neuropathy and carpal tunnel required an orthopedic spine specialist and neurologist to properly diagnose me.
Don’t stop advocating for yourself to get to the bottom of your symptoms to get properly diagnosed and treated.
1. https://my.clevelandclinic.org/health/diseases/cervical-myelopathy
2. https://www.aafp.org/pubs/afp/issues/2020/1215/p740.pdf
3. https://www.spine-health.com/conditions/neck-pain/cervical-spondylosis-myelopathy
4. https://www.neurosurgery.columbia.edu/patient-care/conditions/cervical-spondylotic-myelopathy
5. https://www.nm.org/conditions-and-care-areas/orthopaedics/cervical-myelopathy-and-radiculopathy
6. https://bestpractice.bmj.com/topics/en-gb/577
7. https://www.jabfm.org/content/33/2/303
8. https://www.nejm.org/doi/full/10.1056/NEJMra2003558
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