Sunday, January 13, 2013

The Day I Thought I was Dying!

I am not going to lie to you, readers, I had hoped to one day craft this story into something like James Thurber’s classic “The Night the Bed Fell,” but I realize I am not that witty of a writer blogger. Nonetheless, this story – which does not make a better recitation – could be beneficial to anyone with a craniofacial condition, so I’ll share it now. A tale of warning perhaps, so you don’t violently reach out and grab the arm of your unassuming airplane neighbor should you experience the phenomenon known as aerosinusitis. Seriously, y’all, they have air marshals these days!
Several years ago, I was traveling alone for a business trip. I am quite antisocial on airplanes, so this trip was going just my way. I had a snoozing seatmate and lucked out with the bulkhead seat, feeling almost as important as those first classers behind their little blue curtain.
The plane ride was smooth and uneventful and quite before I realized it, the pilot announced our descent. Dutifully, I turned off my phone (confession: I just put that baby on airplane mode) and sat back in my seat, happy to be at my destination. Just then, out of nowhere, the most blinding pain I have ever experienced ripped through my forehead right above my right eye. All joking aside, it hurt like no pain I had ever known. My eyes slammed shut and began pouring water through my clenched lids. The pain was so great that I was instantly nauseous and broke out in a cold sweat. “It’s an aneurysm!” I panicked (my family may or may not have an irrational fear of succumbing to aneurysms). I grabbed my armrest and thought about pressing the glowing attendant button. Then I thought about screaming, but in all earnestness, I couldn’t even move I was in so much pain. After about 90 seconds of feeling this excruciating pain, I doubled over and pressed on my forehead with trembling hands. My life didn’t flash before my eyes, but I did go through a mental catalog of what dying on a plane would mean. It would certainly make the news... not how I wanted to go out!
I pressed harder on my forehead, feeling some release and a few seconds later by forehead made a noise. I know, you’re thinking, “What the heck is going on here?!” A sound much like a valve releasing pressure went, “Eeeeeeeek!” and the pain went from off the charts to about a 9 (on that 1 to 10 scale they use in the ER). Since a few minutes had passed and I heard squeaking going on, I decided this was no aneurysm and I would live. However, death now seemed like sweet relief because I was still in agony. My contortions in my seat had managed to rouse my neighbor who looked over and said in alarm, “Are you okay?”I managed to nod, with my eyes still closed, and said, “I think it’s a migraine.” He asked if I needed the flight attendant but I waved my hand and said, “No, no... I don’t think so.” I can tell you, I wasn’t sure I didn’t need help, but I had no idea what a flight attendant could do about the mystery pain in my head mid-descent. 
Slowly, the pain decreased again with constant pressure on my forehead. I was able to open my eyes and release my jaw. My neighbor looked over at me with concern (the black mascara streaks on my face surely didn’t help) and I managed a weak, “It’s easing up, thanks.” By the time we landed, the pain was now only a dull headache. The nausea had subsided and the adrenaline had worn off. (It is quite a rush to be convinced – even for 90 seconds – that you’re dying.) I let nearly everyone else deplane before I stood up, a bit woozy, and waddled off the plane. I had no idea what had happened and for the rest of the day, I felt a bit hung over, but otherwise fine. 
I now know what I experienced is called Aerosinusitis or Barotrauma. You can Google it and find lots of different definitions and levels of explanations, but Wikipedia breaks it down quite simply: “Aerosinusitis is a painful inflammation and sometimes bleeding of the membrane of the paranasal sinus cavities, normally the frontal sinus. It is caused by a difference in air pressures inside and outside the cavities.”
High altitude fliers and scuba divers most often experience this condition, but if you have sinus issues like I do, regular commercial flights can cause it. The reason it happens is because (again from Wikipedia)
On ascent, the air in the paranasal sinuses will expand according to Boyle's law, contracting during descent. Normally, the sinuses drain into the nasal cavity through small ostia, which permit mucocilliary clearance and ventilation that equilibrates pressure. However, when the opening is obstructed due to inflammation, polyps, mucosal thickening, anatomical abnormalities, or other lesions, pressure equilibration is impossible. Squeeze is produced on descent when trapped air in the sinuses contracts and produces negative pressure. The pressure differentials are directed to the center of the sinuses producing mucosal edema, transudation, and mucosal-or submucosal-hematoma, leading to further occlusion of the sinus ostium. The sinus will fill with fluid or blood unless the pressure differential is neutralized.
With me, I have numerous sinus polyps and as my ENT says my sinus cavities are “just abysmal” and “chock full of junk.” Lovely, I know. Simply, that means I don’t have adequate drainage passages to allow the pressure to equalize on its own, so I experience aerosinusitis. Fortunately, I do not experience this ice pick to my skull every time I fly, but it does happen about 25% of the time. For example, on my last vacation, I had a total of four flights and only experienced an episode on the first flight. Weird, I know. But like Auggie in Wonder, I definitely have some medical mysteries about me. 
I plan on consulting with my ENT in the future to determine how he thinks I should handle my sinuses, but so far, the best advice I have found is to take a decongestant before the flight so that my sinuses are as clear and minimally inflamed as possible. When I feel the first sign of the attack coming on, I just get comfortable and prepare to ride it out. The first sign, by the way, is often pain above my teeth on the right side of my mouth and the slightest mounting of pressure over my eyes. Then the ice pick.
Out of all the medical traumas out there, I am relieved that aerosinusitis is in the end, just an inconvenience. A painful one, but short lived and easily avoided. Amtrak anyone?
*Please note that this blog is not intended to diagnose or treat any medical conditions. Should you experience aerosinusitis or any other medical condition, please contact your physician immediately.


Tuesday, January 1, 2013

Happy New Year!

2013 promises to be an exciting year for CCA, starting with the launch of our all-new website at  This new website will have frequently updated information and links, including connections to all of our social media outlets.

One of my favorite new sections is the “Choose Kind Wonder” page.  It includes a comprehensive list of links about the book, including many educational resources.  There is also a downloadable sheet for teachers with instructions on how their students can make a real-life connection to a CCA WonderKid or Sibling!

CCA’s current and past newsletters are available for download on the new website as well as our syndrome booklets, one-sheet overviews, and webinars.  You can also browse our CCA Web Store and check out several clearance items.  Most importantly, the “Donate Now” icon can’t be missed at the top of every page.  Making a contribution is the best way to endorse the new website and to show your support for our other programs and services.  CCA’s existence is 100% dependent on donations from individuals and corporations.

Outreach and support for our affected families remains the highest of our priorities.  For our CCA families, there is information about registering for the annual retreat, applying for financial assistance, family networking, and finding a qualified craniofacial center.  The “Help CCA” section is full of ideas and guidelines on how to host a fundraiser, examples of successful family fundraisers, and information about the “Retreat Reward Program”.  Resources about how to raise public awareness will be added as we expand the content.

The CCA Board and Staff look forward to serving our families in 2013.  Useful tools like and new programs like the CCA WonderKid project are sure to help us “Widen the Circle of Acceptance” and to fulfill or mission of empowering and giving hope to individuals and families affected by facial differences.

Dede Dankelson
CCA Board Chair