What is your story about?
I'm a 29 year old female. I was diagnosed with craniocervical instability due to Chiari malformation and hypermobility. I underwent neurosurgery to correct the problem and saw definite benefits. Nothing else in life has made as much of an impact as all of this, and I’ve lived through a lot.
How did your symptoms first appear?
One thing that I noticed was that my head felt really heavy and difficult to support, especially when going to lie down, or when unsupported while reaching for something far away. It turned out that my ligaments were so loose that my head was sliding around about 8mm on the top of my spine.
It was a combination of sore neck, and sore area where the base of the skull connects to the neck. It was especially bad on bumpy roads.
How did your symptoms progress over time?
Mine got worse with age. I’ve always been slightly flexible, but not crazy. Nobody mentioned hypermobility throughout my childhood. My joints started getting worse with age though, as did my CCI (which I hadn’t even noticed before).
In retrospect, what were the signs you had CCI?
Are you generally flexible? Are you naturally “good at” yoga? Do you have tight muscles (especially hamstrings) to compensate for loose joints? Can you easily turn your head to 90 degrees, and possibly slightly beyond? Ever get kind of lightheaded or faint? Do you ever have a weird feeling of pressure in the back base of your skull when you stand up suddenly? Frequent pressure headaches?
Those are all things I’d look out for as being common alongside the feeling of head heaviness and neck pain.
How did you get diagnosed?
Sudden and severe symptoms hit me in 2017. My doctors wrote it off as fibro or Lyme for a year, until I finally got in to see a neurologist. He ordered an MRI. It turned out my spine was collapsing and stabbing me in the spinal cord, my brainstem was under immense tension, and my brain was sitting on the base of my skull instead of floating.
How old were you when you had the surgery?
What was the surgery like?
My surgery was fucking terrifying. I had Chiari malformation with ligamentous laxity that caused the CCI. Recovery was rough, but it’s honestly been worth it because my body has felt so much better since (posture-related and not). It’s been so much easier to maintain good posture ever since.
What has been the mental impact of this condition on your life?
I wrote up my will, had major neurosurgery to correct the problem, survived that and a brutal recovery process, and still have much of the pain that sent me to get this fixed in the first place.
It taught me a lot about who and what is actually important in life. Anyone who was not there for me is now an afterthought, and I don’t really bother caring about them anymore. I don’t have the time or the energy for superficial relationships anymore. My life is a bit of a wreck, but that barely registers. What does matter is the family members and friends who got me through it, my dog (my best nurse ...(more)