Klippel-Feil

By Danna

I was 26 in 1992 when I began my painful journey.

In college to become a radiology tech, I was working full time and dating. Young and vibrant and my whole life ahead of me. My neck pain and stiffness was unbearable and I started seeing my PCP to get some answers. I was referred to get some X-rays and MRIs and given pain medication and some muscle relaxers. I also began seeing a chiropractor immediately to get some help.

Back then, this was not covered by insurance (if you young ones can believe that!) Then I fell at work. The pain was excruciating and I filled out an accident report and started a claim. I was denied…I was born with this fusion, sorry. My chiropractor even drove me to Olympia to appeal as the pain was worsened by the fall. I couldn’t move my neck! 

Denied, again…Sorry!

Then I fell again in 1997, landed on my back and woke up unable to get out of bed the next morning. My mom came over, and what a sight—she pulled me out of bed, to literally crawl to the car. When I went to a doctor I was diagnosed with fibromyalgia. Not! A week later, a chiropractor popped my lower lumbar slip and I screamed in agony, but at least the pain was not off the charts and I could walk!
I don’t want to make this too long, but after 20 years of pain, numerous episodes of my neck getting stuck in awkward positions, a heart surgery to repair a congenital mitral valve prolapse associated with this syndrome, thousands of dollars in dental costs, numerous bladder and kidney infections, nocturnal pain, fatigue, fainting and falling spells from the spinal column pressing on my cord, unbearable lower back, hip and knee pain—I finally have an answer to my complex set of symptoms! I was diagnosed with Klippel-Feil Syndrome.

I am a single, working full time mom and I am unable to stand the pain any longer. The internet was not available when my symptoms began and I am grateful for the awareness on the Klippel-Feil page that has raised awareness about KFS. Hopefully others now won’t have to go on the crazy diagnostic journey I had to endure.

Oh, by the way, the first doctor I saw? His MA told me on the way out of the office that maybe it is my big hair causing the neck pain.

“Hair can be heavy,” she said. “Especially when its wet. Maybe you should get it cut?”

 

53 thoughts on “Terrible Undiagnosed Back and Neck Pain? “Maybe You Should Get a Haircut,” Suggests Doctor”

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