The longest day of my life was the day I spent at Riley Children’s Hospital, while my youngest son went under the knife for a ten-plus hour brain surgery. Standing over his bed, watching him fall into a deep sleep, and trying to not fall apart will forever be etched in my mind’s eye.Because of a disorder known as Arnold Chiari Malformation, Devin had chronic head-pain from an early age. It took multiple doctors and endless searching to even get a diagnosis. This was due to very little research and even less exposure in the medical field to this issue.
To use the term “chronic head-pain” seems almost laughable now. For those of you reading suffering from debilitating migraines, I do not envy you. I have been told by numerous Chiari survivors that their “head-pain” exceeds the pain of migraines by millions.
Imagine getting the worst headache in your life every time you bent over to tie your shoes, or sneezed, or heard a loud sound, or had a cold, or any of a list to long to read of triggers. It was no wonder he was depressed, slept all the time, and stayed in his room for most of the day.
I encourage you to read more on the subject, but here are the facts laid out in something not so … academic. Not that my readers are dumb, but this stuff is made up of some big words even I can’t pronounce.
What is Chiari?
In the “hind brain” or base of your skull (go ahead, you can feel it) are two tonsils. No, not like the ones in your throat, more of a herniation. When these tonsils close or “herniate”, they block the spinal fluid from circulating around your brain and down your spine. The magic of the human body right? These herniations cause debilitating headaches among other issues if left unchecked. These issues move the scale from pain to spin biffed.
In order to relieve this herniation, there are different procedures depending on the severity of the closure: from a simple watchful eye by a doctor, medication, to surgery. By the time Devin was diagnosed, the only option was surgery.
Here are a few of the symptoms associated with Chiari:
● Neck pain
● Hearing or balance problems
● Muscle weakness or numbness
● Difficulty swallowing or speaking
● Ringing or buzzing in the ears
● Curvature of the spine
● Problems with hand coordination or fine motor skills
Other conditions associated with Chiari:
● Spin bifida
● Tethered cord syndrome
● Spinal curvature
How Chiari is diagnosed:
● Magnetic Resonance Imaging (MRI)
● Computed Tomography (CT)
Past estimates place the likelihood of children born with Chiari around one in every 1,000 births. Because of newer research and awareness, that number is much lower.
Unfortunately, many cases go undiagnosed for longer than needed. Hence, the reason for this post. Through many organizations, both for profit and not for profit, research is now starting to gain popularity. From genetics, to brain studies, to different treatments, Chiari Malformation is now being taken seriously.
What is needed from the general public? More awareness … more understanding … more focus. This genetic disorder is now being understood because a few doctors would not say they didn’t know what was going on and didn’t give up.
So where are we now? How much better is Devin after surgery and a few years to heal and adjust? That is a question only he can answer but I can give you my observations.
He has improved. His headaches are almost gone. There were other issues but that is for another time. To say it has not been a long, difficult, and painful road would be a lie. There have been many times when he wanted to give up. That is where I come in. I have been one of his biggest fans and sometimes he has needed a swift kick in the pants; but, at the end of the day he has slowly recovered.
This is where you come in. I would ask each of you to read more about this disorder and either share this post of find research to share. By getting more knowledge out to the general public, it will increase awareness. And if this can help one person understand what they are going through and one family to understand how to help and cope then this is worth it. The real heroes here are the ones that live with this every day of their lives and push on.