axPsA and
I have a very rare, congenital birth defect called Klippel-Feil Syndrome
or KFS. This is a skeletal disease which primarily affects the cervical spine, inner ear, teeth etc.
This painful syndrome has no cure. One can only treat the symptoms.
For decades doctors have told me the congenital fusion of my C2 and C3 does not cause pain. They know nothing of this disease.
When combined with axPsA, my spine is a real mess and my pain is exquisite. I am finally to see a pain doctor who “gets it” re KFS.
It has been a lonely journey.
I would love to hear from someone who has psoriatic arthritis of the spine and KFS as well.
I don’t have KF, but I do have axial PsA in lumbar and cervical spine, most notably the C5-C6. C5-C6 axial arthritis is particularly problematic because this is the segment responsible for head/neck rotation. So when there’s any kind of fusion going on, as is my case due to the arthritis, it can be particularly painful. My last radiological exam actually caused the x-ray tech to let out an audible “whoa!”. I asked him if it was that bad, and his reply was, “it’s pretty rough in there.”
I feel your pain. My lumbar spine has collapsed as held together with titanium rods and plates. In fact, all the disc in my spine have collapsed. My cervical spine is so messed up surgeons. Don’t want to touch it unless it was threatening my life.
Do you have a frozen neck too? I have very very limited motion side to side or up and down. I have so many bone spurs in my cervical spine. It looks like a haze on x-rays.
It’s nice to hear from someone who suffers like that. I don’t wish this disease on anyone. I hope they can stabilize your spine. I take a methotrexate infusion once a week. Doc wanted me on a biologic, but Medicare doesn’t pay for biologic after 65 unless you carried Insurance over from from your career. It was going to cost me $1623 a month. Too much for me.
Wishing you well, we both have to live day by day, not knowing what our pain is going to be from one day to another.
