41 year old male with questions and looking for anyone with similar journey
Hey everyone, for full disclosure, I had gemini help turn all of my results and symptoms into a post. I’m looking for some insight from anyone who has dealt with multi-level spinal issues or has felt "dismissed" by surgeons despite clear neurological symptoms. I’m 41 and my mobility and autonomic health are tanking fast.
The Background:
• March 2025: Had C6-C7 ACDF surgery. Had severe canal and foraminal stenosis with cord signal loss.
• The Problem: Since the surgery, I have developed a complete obliteration of cervical lordosis and new MRI reports are still showing moderate to severe stenosis and spurs at that level. and it takes a massive effort to maintain a horizontal gaze.
The Current Symptoms
• "Jelly Legs" & Repeated Falls: My legs feel like they have a heavy blanket on them or they randomly give out.
• Autonomic Issues: Blood pressure drops, random sweating/hot flashes, and muffled hearing/vision.
• Neurogenic Bowel/Bladder: Severe gas/bloating and changes in bladder control.
• Positional Pain: Severe buttock/thigh pain (S1 distribution) that is much worse when laying flat.
The Imaging Evolution (2025 vs. 2026):
Cervical: MRI now shows moderate-to-severe stenosis at C5-C6 (the level above my fusion) and Cerebellar Tonsillar Ectopia (CTE). I’m concerned my loss of neck curve (Kyphosis) is "tethering" my cord and pulling my brainstem into the foramen magnum.
Lumbar (The "Tight Garage"):
• The Foundation: I have congenital stenosis (short pedicles) throughout my lumbar spine.
• June 2025 MRI: Showed multiple disc bulges and facet arthrosis already causing moderate narrowing.
• March 2026 MRI: A new 4mm mystery mass (sequestration vs. conjoined nerve root) has appeared in the subarticular recess at L5-S1.
• The Tipping Point: Because my canal is already narrowed by short pedicles and previous bulges, this new 4mm mass seems to have turned "moderate" narrowing into critical crowding of the nerve roots.
The Conflict:
My original surgeon retired since my operation. He was very dismissive of my symptoms after surgery too. I recently met with a new neurosurgeon who told me "nothing on the MRI could cause these symptoms" and joked that "radiologists get paid by the word" regarding the 4mm mass. When I pushed for answers, he told me I was free to find another doctor. He was in the same group and was fiends with my original surgeon. Not sure if that adds anything.
Questions for the group:
Has anyone with congenital stenosis (short pedicles) found that "moderate" MRI results actually cause "severe" symptoms because there is zero reserve space?
Could Cerebellar Tonsillar Ectopia (CTE) be responsible for these Vagus nerve-style symptoms (BP drops, GI issues) even if it's below the 5mm Chiari threshold?
For those who lost their cervical lordosis after ACDF, did you find it caused a "domino effect" of issues in your lower back?
How do you handle a surgeon who dismisses neurogenic bowel/bladder symptoms because they don't see "gross cord compression" on a static, laying-flat MRI?
I have a lumbar MRI with contrast in 12 days to see if the 4mm mass is an active disc fragment or an anatomical variant, but I’m struggling to walk in the meantime. Any advice or similar stories would be greatly appreciated.