Meet Chiari Warrior – Parker
September is Chiari Awareness month. Each day, I am going to share one person’s journey…in their own words. Chiari malformation is a condition where your brain herniates below the base of your skull, compressing the brain stem and spine. The symptoms are unbearable, at best, and there is no cure…
Yesterday you met Boston...meet Boston's BFF Parker...
Boston & Parker
The Arnold Chiari Malformation diagnosis came as a complete and unexpected shock. Parker had his normal yearly physical in July, 2015 and our world turned upside down. He's always been a bean pole so I'm not sure how I missed the scoliosis in his back. A quick X-ray confirmed the diagnosis, as did Parker squealing with glee that his back was "so cool and looked like a snake." The next day we learned that we needed to be seen by a spine specialist. No biggie. Maybe he'd need a brace. If we are lucky they will just wait and watch.
We entered the spine specialists office goofy and in good spirits. However, the doctors expressions told us otherwise. As he looked at Parker he continued to say how surprised he was to see a back so terrible in a boy so young, and that in addition his curve was to the left. Woopideedoo! I thought. Curve to the left or curve to the right. It's a curve regardless. Lets fix it! The doctor then proceeded to tell both Parker and I that he's that really special 1% (of course I already knew that, but curves to the left are often indicative of something related to spinal cord or neurological. The doctor said our next order of business would be to order an MRI and the MRI would require anesthesia. 1) To get the best pictures and 2) because it would be "hours".
No urgency on the MRI, no pain or issues were presenting themselves so it was scheduled for mid October. Until then it was research, prepare for the worst but hope for the best. Summer vacation kicked off like usual but slowly and steadily I watched my boy deteriorate. I found him to be exhausted doing very little, spending great amounts of time lying down with his iPod. Napping in the afternoon. Unable to keep up with any of his friends. He was lacking coordination and now unable to ride his bicycle. Something didn't feel right as mom, even though he continued to assure me that "Mom I'm fine!". He began having pain in a small portion of his feet and gradually the pain climbed up into his knees. He began asking for regularly scheduled ibuprofen. I contacted his pediatrician. Met with his spine specialist and pushed like the "crazy" momma to get that MRI moved. With each passing day it felt more and more important for it to be moved. Thankfully, we got it rescheduled for Sept 4th. On September 2nd Parker began having debilitating headaches. Oddly located, in a very specific pin pointed location on the back of his head. As a migraine sufferer the location didn't even make sense to me. One more pedi visit and I was told "don't be surprised if something shows on the MRI." Duh! I thought. We are going to see one squiggly snake back and we are going to fix this!! I heard the doctors words but again wasn't prepared for what was ahead. I knew that without a doubt we've got this. 3 hour MRI complete, holiday weekend, and results on Tuesday. Parker's results were scheduled for 2 o'clock but at noon I received a phone call. A phone call I will never wash from my memory. I was told that the office wanted to save me a trip because they were going to need to transfer his care to another doctor, a neurosurgeon. He said to write down the diagnosis and few more words that may assist me in researching this diagnosis until we could be seen: Arnold Chiari malformation, syrinx, tonsils, inevitable surgery, and then my own brain went blank.
I had just seen a little boy wearing an I survived brain surgery yellow t-shirt with red writing. His story sounded a lot like my Parker. I ached for his family, never did I think I would be joining that family in their fight.
Parker was decompressed aka had brain surgery on October 9,2015. Surgery was not a correction nor a cure. What it did do was open our eyes to a world of pain that Parker always thought was "normal". He began touching his fingers together as if he had never felt them before, he had the strength to open a soda pop top for the first time on his own.
Every accomplishment felt huge, there were so many firsts that we had easily overlooked before because we would often complete a task for him. Rather than point out his inability.
This is sadly only the very beginning of our story. We are two years into our journey and it's been filled with ups and downs. Parker had an additional surgery in April of 2017 for occult tethered cord because we quickly learned Chiari has many friends and they like to play too.
I could go on and on about our endless battles in search of a medical professional that can help my son. Even if it may help only one symptom.
If there is one thing we have learned on this journey its that the Chiari community/village/family are often the most knowledgable and helpful. Whether it's their ability to listen and really understand. Or point us in a direction of something that has worked for them.
Parkers greatest gain was found in his friend and fellow Chiarian Boston. "It's great to not have to explain anything to him. He just knows. We don't have to talk about Chiari or explain it to each other but we could if we wanted to."
To read more about Parker and continue to follow his journey visit and like www.facebook.com/parkervschiari
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