Problems Along Entire Spine
Diagnosed with nrAxSpA in 2022. Had prior thoracic spine surgery in 2019 on T10-T11. Lower back, SI joint and hip pain have been constant for many years. Now, i just learned I have 4 disks in my cervical spine that need decompression and fusion and that I have some sort of issues with my lumbar spine on xray. So, 2 questions:
1. Ortho wants to do surgery (not that i will let him as he is not a neuro surgeon and part of my problem is neuro and he couldn't answer any of my questions about affects to and from my condition). What if my nr changes to AS. How will this fusion impact the areas of surgery down the road?
2. Why do they call it nonradiographic when my entire spine is going to sh** and there must be a connection to my AxSpA? I don't have syndesmophytes, but numerous osteophytes. I have disk shifting, spondylosis, bulging, etc. Is this truly unrelated?
I'm seeing my Mayo Clinic specialist who diagnosed me last year in December, so I'm not really asking for medical advice, just mostly venting. Anyone else have no si damage on xray but everything else is damages, just not according to their criteria?
https://axialspondyloarthritis.net/symptoms/heel-pain Hi Vicki - I understand your frustration. I was originally diagnosed as undifferentiated SpA with no evidence on imaging.
I have my neck fused from C5 to C7, thoracic fused T7 to T9 with a rod and I have had several surgeries on my lumbar area. I have so many bulging discs that the nerve pain is unbelievable. Also have osteoarthritis/spondylosis.
I was diagnosed without my labs indicating inflammation and/or x-rays not showing any disease. I have inflammation in entheses in my spine, arms, and legs, a torn hamstring, and labral tears in my hips. I also needed a left hip replacement - where I had an orthopedic surgeon perform the surgery. The pain is much better following surgery.
Your questions are good ones - and I am sorry that your physicians didn't/couldn't answer your questions regarding spondyloarthritis and surgery. But I wanted to offer up that I have had no ill effects or issues with my fusions relating to my diagnosis of spondyloarthritis/AS. My neck was originally fused prior to my diagnosis. It just got worse and the next level needed to be fused - which is an orthopedic issue.
When my diagnosis changed to nr-SpA, I had a very hard time with enthesitis - I could barely use my arms, and my feet hurt constantly as well as severe pain in my Achilles. My whole spine felt like it was on fire from the enthesitis which wasn't evident on imaging. But I was diagnosed at that time with nr-SpA. I was diagnosed with AS only when the inflammation was evident and my labs indicated it.
"Ankylosing spondylitis also may cause bone spurs. This rare arthritis causes spinal inflammation. Over time, ankylosing spondylitis fuses, or connects, the small bones in the spine (vertebrae). The body responds by forming spinal osteophytes."
https://my.clevelandclinic.org/health/diseases/10395-bone-spurs-osteophytes#:~:text=Ankylosing%20spondylitis%20also%20may%20cause,responds%20by%20forming%20spinal%20osteophytes.
In more depth - "Sacroiliac involvement is a hallmark of the disease and is required for diagnosis. Plasma cells and lymphocytes infiltrate the sacroiliac joints, both the synovial and ligamentous portions, resulting in subchondral edema, synovitis and joint effusion. The inflammatory infiltrates later lead to bony erosions, healing with new bone formation, which progresses to ankylosis. " https://radsource.us/ankylosing-spondylitis/
I am hoping some of my story helps answer your questions. If not, sorry for rambling on and on ...
With regards - Rebecca (community moderator)Thank you! Very helpful. I am also battling achilles issues. The doc said it was tendonitis but did no testing so not sure if it really is. I'm sorry you've had so many issues too. It's sad and scary for the future. Here is an article I found referring to tendonitis. It may help, as there are some tips on stretching and treating the pain. I wish there was a magic pill to assist. Unfortunately no such luck. Wishing you a good day with pain and suffering. Warmly - Rebecca (community moderator)
