At FL 330 Without A QRH: My First Flying Adventure After Brain Surgery

You may ask yourself..."Self, What the heck is she talking about? Isn't there enough acronyms in my world without adding another? Already I have the learn NS, NL CM1, EDS, AC, POTS, IIH, CCI...and here we go again! 

Stay with me..I will explain.

Remember, I aspire to be a pilot...one day..one shining day, I will solo.
I plan to pick my lessons up again as soon as the air begins to chill here in Texas...
Then watch out!

In the meantime, my adventures in aviation are limited to those that require me to fasten my seatbelt and stow my electronics at take off.
However, I feel I take that to the next level. I feel I fly more frequently than most. I've gone from being an occasional flier  to a virtual globetrotter.
I love it and I refuse to be limited by a little pain.

That being said, I thought I would share my first adventure in flying after my second surgery.
Again, as passenger, not pilot.

So, we board the plane.
Already, we are in a state of fatigue.  Due to rain we were bumped and re-routed to another airport.
We were assigned seats in First Class...by this time it's 11 p.m. and we've been at the airport since 1 p.m.  Our flight is to take two hours.

I settle in the leather seats of the AirBus A319.  As the other passengers board, a wave of panic hits me.  In all of the packing, prepping and planning for the trip, the fact that this was my first flight since surgery had not crossed my mind.  I grab for my bag of "just in case" meds and pop a Flexeril,  three Valium (6 mg total NOT 15 mg) and four Ibuprofen (800 mg).  I mentally berate myself for not bringing my travel pillow.  Open the blanket and prepare for the worst.
I mean.
I have flown post op before..but NOT with shunts.
My mind is a flurry of "what if's "--"What if they clog? What if they move? Can they move? What if the pain is so severe I can't take it and I can't get out of this plane? What if I have a seizure? What if....?"

You will be glad to know that I think I dodged all of the "What If" scenarios that came to mind.
So what happened?
Something I totally did not expect. Something I did not find in the QRH, something no one warned me about...but given the fact that I'm very verbal with my physicians that I fly frequently, perhaps they could've mentioned and avoided a panic.
First, my ears got stuffy...normal occurrence when flying.
Swallowing didn't correct it..so I just went with it.
My head began to ache..not terribly.
My muscles spasmed in my neck and shoulders..not a new thing for me.
Then..my skull caved in.
I mean it sunk in.
Or medically, a large indention appeared at the base of the skull at the site of the craniotomy defect and cranioplasty.
It was freaky.  I felt as if I instantly looked like E.T. with his misshapen head.

See that indention on the back? -Just call me E.T.! 

I kept this too myself..not wanting to be a whiner. 

We landed, found a hotel..I took a real pain pill..we slept. 

Next morning, we are out the door to grab a rental car and make our way to our target destination. 

The headache builds.

And builds.

And builds. 

The spot sinks, and sinks and sinks. 

We finally get to Bob's sister's home. One sister is a nurse. I ask her to check out my creepiness. 

She sort of gasps. 

Yay.  That's reassuring! 

She gets my husband to look to see if it's normal. 

The verdict.."NO!" "Not Normal!" 

Headache is continually building. 

I'm chugging water and start medicating. 

Laying down..while everyone else visits downstairs. (I despise this feeling- like I don't get to be a part of the fun club--and they all whisper about me..you know, "She looks good"-- or "She looks really bad" Or "I'm really worried about her." 

So I call the doctor.  Of course he's in surgery. (I guess that's what neurosurgeons do). 

I am told to hydrate and rest...and of course..go to the ER if I feel it's necessary. 

This furthers the worry in the house. I stay upstairs as long as I can..and finally make my way down to the living.  Whispering subsides but concerned looks remain.  "I'm fine!" I blurt out. "I do this EVERY day...it's new to you..not to us." 

I supposed the agitation in my voice rocked everyone back into their normal state of being and we focused on the task at hand: eating dinner. Sometime during dinner, as I swallow, my ears finally clear..about 15 hours after the flight.

At long last, when the nurse finally calls back - I am able to scribble a note in my own personal QRH, 

"Swelling and depression at surgical site with changes in altitude can be perfectly normal, especially for the first six months after surgery." 

So- the rest of the story is that I flew three more times, so a total of 4 flights in 7 days. Each time I had the swelling and sinking, but no more headache.  

I guess my body got the message I silently sent it as I laid in bed with a headache the first day, 

"You will NOT beat me. I will NOT stay home. I will NOT hide--You do NOT win!"

So yes, I found my self at FLT 330 (on an airplane at 33,000 feet) without a QRH (Quick Reference Handbook)--but I did what most pilots, nurses, moms, dads and Chiari, Arachnoid Cyst and really all neurological patients do. I made the best choice I could at the time, with the resources and information available.  

Life comes with no instruction manual. 

Just live it and roll with the changes.