I should be asleep right now. I tend to get all of my writing ideas at night, as well as all of my creative and business ideas for that matter. I’ve slept so much these past few weeks that there are occasional hours I feel wide awake, like right now after 2:00 AM.
Three weeks ago today I underwent the most serious medical procedure I’ve ever endured: decompressive suboccipital craniectomy and cervical laminectomy, also known as Chiari Decompression. This included a duraplasty, which required harvesting tissue from deep within my thigh to open and expand the dura, the protective tissue the contains both the brain and spinal cord.
My daughter and I are two of the small population born with this congenital disorder, in which the cerebellar tonsils, located at the base of the cerebellum next to the spinal cord, protrude through the opening in the skull forming a hernia in the upper spinal column. Though not life-threatening, it creates a variety of symptoms, including:
- localized headaches in the back of the head leading to the eyes,
- severe stabbing headaches brought on by laughter, coughing, or sneezing;
- lack of coordination and fine motor skills;
- dizziness and vertigo;
- inability to speak fluently without pauses and interruptions as words won’t form correctly or at all;
- chronic neck and shoulder pain;
- occasional tingling or numbness throughout the arms and hands;
- and a general sense of malaise.
My daughter went through a Chiari Decompression in July 2013, and is looking at a second surgery in the near future as her Chiari Malformation is off-the-charts in both size and severity. She has a 28mm obstruction, whereas mine is 16mm, which is considered moderate to severe depending on the source; my doctor went with severe. Make no mistake, even the smallest obstruction of a few millimeters can be just as problematic.
I am healing well. My neurosurgeon saw me this week and said I was in far better condition than most patients he sees a few weeks after surgery. Though I’m tired and groggy most of the time, I feel relief from the chronic pain in my neck and shoulders I’ve endured for far too many years to recount. The headaches I dubbed the “Chiari Headaches,” not to be confused with my migraines, are gone! I feel a new sensation of clarity slowly creeping into my brain, masked by medications and sleepiness, I can sense it. And that is a beautiful thing.
I’m sad that my daughter needs to undergo this procedure a second time, but I wish for her all of the relief she can possibly obtain. She was a prolific athlete and misses it more than I could ever understand. She had to quit because the Chiari symptoms took a rapid grip of her head and body. It will bring our family a great joy to see her back on the ice figure skating or on the river rowing crew, or whatever other sport she picks up.
I’ll end with this. If you are living with Chiari, know that it is treatable. There is no cure, but quality of life can be vastly improved. If you suspect you might have it, talk to your doctor or a neurologist. The only way to detect it is by MRI. Be proactive, take control of your health. It took me a long time to reach this point, I’m 40 now, I was diagnosed with Chiari at 39. It’s never too late.
UPDATE: I learned while sharing this on Twitter that September is actually Chiari Awareness Month. I had no idea. Glad I was able to contribute in this small way to building awareness. – DTG.