Living with Chiari and a Second Surgery for My Daughter

I hadn’t planned to devote multiple blog posts to this issue, but here I am. Another late night, my mind racing on this issue. Writing is generally my best cure for this situation. Well, it was determined on Monday this week that Skye, my daughter, will definitely undergo a second Chiari decompression surgery at the end of this month.

Interestingly, she has developed tiny bony growths on her dura, possibly playing a role in why her symptoms returned a few months after her initial surgery. We are not sure why this happened, and we won’t know the details of what is causing the Cerebrospinal fluid (CSF) blockage until she is in the operating room. It could be a thickening or scarring of the graft on her dura from the previous surgery. It’s all speculation at this point.

Interestingly, my wife found this article, “Does The Type Of Dural Graft Material Matter?” at ConquerChiari.org. Check it out. Well worth reading if you have had the surgery or are contemplating it.

As I mentioned in my previous post on Living with Chiari, I went with an autologous graft, meaning my own tissue harvested from my thigh. It hurts for now, but seems to have the highest success rate in this procedure and I’m feeling okay as far as that goes. My daughter’s surgeon prefers to take a different route; he’s the expert, one of the top in the country, so I’ll trust his opinion and that all goes well for Skye.

My one request to all parents reading this: don’t ignore your child’s complaints of headaches or any myriad of symptoms that seem to occur on a regular basis. Sometimes those daily tummy-aches could turn out to be something serious that is fixable before it becomes a major problem. Sometimes it’s nothing more than a minor food intolerance, but it’s best to know whatever the cause. Your child will thank you for it in this future.

Trust me on this, I went through a lifetime of odd issues like poor ability to play sports due to my unwieldy coordination, my strange speech patterns in which I need to pause to force words out mid-sentence, and the many pain symptoms that were generally written off as growing pains and the always fun to hear, “you’re too young to have problems.” Turns out they were congenital issues and very real – early Chiari symptoms as well as a patella-femoral mal-alignment in both legs that developed into arthritis in both knees. Fixing these problems before adulthood would have been life changing on so many levels, but I can’t go back.

I am pushing forward, though. Skye is pushing forward. So should you.

Living with Chiari, Recovering from Chiari Surgery

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.