When my neice, Kaya was diagnosed with Chiari and Syringomyelia (C&S) just before the age of two, I listened to my brother and sister-in-law or my parents explain to me how the disorder worked and what they intended to do for her. On the occasion I could be at the hospital when the doctor came in, it was nice to have a first-hand explanation, but often still a bit unclear.
I began reading books written by others who had suffered from these disorders, not only to be able to write for Conquer for Kaya, but also to understand what Kaya is going through. With such an array of symptoms, it is difficult for adults to describe what they “feel” and impossible for a 3 or 4 year old.
Recently I have had many physical symptoms concerning me and visited my new doctor in Tucson, Arizona. She was very thorough in her questioning and I told her about Kaya having Chiari and Syringomyelia, that I recently learned it is hereditary, then she jotted them down. When I returned to hear the results of my lab work, I had been reading a book, “Nothing Short of a Miracle” by Nelma Jean Bryson and similar to other books the woman in this book spent more than 30 years with increasing symptoms before she was diagnosed with Chiari.
My doctor said my labs were boring, everything was very normal. I am lucky she is not just ready to give up. I requested an MRI with dye and explained that the variety of symptoms that occur with C&S is due to where the pressure is being applied in the nervous system. She admitted to not knowing about C&S and not having looked it up, but agreed to request an MRI, mostly for my reassurance. That’s all I ask. I don’t want to spend 20 or 30 years with increasing pain, new symptoms and the chance of permanent paralysis when I KNOW what might be the cause.
This really made me think of awareness for Chiari and Syringomyelia and how important it is to inform doctors of these disorders. In the book, “Nothing Short of a Miracle,” I was also shocked to see how far we’ve come with the treatment of C&S. The author, Nelma Jean Bryson had her decompression surgery in 2000, they used bovine pericardium (the casing around a cow’s heart) to patch the dura, it took over six months for her to recover enough to drive a car. For Kaya’s worst surgery recovery she was in the hospital for 5 weeks, but recovered in less than three months. I am so grateful for these medical advances, but saddened at the fact Kaya and so many others have to have more than one neuro surgery. And there is still question as to whether she may need more in her lifetime. Those that go undiagnosed for so long find irreparable damage or pain.
I found Norma Jean’s final thoughts inspiring for myself and potential contributors to this cause, from the Serenity Prayer: to accept the things I cannot change, to change the things I can, and be wise enough to know the difference.
I believe we CAN all make a change for the better.
-Angela
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