My Tail Of Woe Part 2 – Learning About My Birth Defect and How My World Just Got Turned Upside Down and Inside Out

My Tail of WoePart 2:

Head on over to Part 1 of “My Tail of Woe” if you happened to miss it.

December 12, 2013 – I am sunnyside up on the operating table. The surgeon extracts my tail which is now the size of a half dollar with loooooooong legs that have wrapped all around my tailbone. (He showed me later). He realizes that this growth has dug a really deep channel and there is no way he can stitch me up. He has to pack the wound with sterile material and leave it open for several months to allow it to heal from the inside out. If he sews me up, the growth will come back quickly and most likely grow even larger. He is perplexed about what it really is as well. While it mimics a pilonidal cyst, it also has its own oddities. Welcome to my world!

Anyway, I am beyond upset by the news that I have to endure open wound healing. I was not at all prepared for this sort of surgery. My physical limitations are major, the pain in unbearable, and the recovery time is mind-blowing for me. Had I known before going in that I would have to endure months and months of daily wound cleaning and packing, I would have planned ahead. Had I known I would not be able to clean my own house, do my own laundry, or stand long enough to cook, I would have prepared differently. And I most certainly would have lined up help with my daughter!

I don’t like being caught off guard. The planner in me was losing her mind. I was overwhelmed and angry. But there wasn’t a dang thing I could do about it other than get down to the business of healing.

The day after surgery I went back to the surgeon so he could check things out. After pulling about the packing, he said, and I quote “oh crap.”

“Oh crap.” Not what you want to hear from your surgeon while you are sunny side up, writhing in pain, and ready to vomit on his foot.

Turns out, there was the bottom of another growth poking up into the newly opened area. Awesome. Friggin’ awesome. Thank you Universe!

My surgeon mentioned something about consulting a specialist. He downplayed the urgency of everything. The specialist called me the next day. Now it was my turn to say “oh crap.”

*Side note* I did get the pleasure of announcing that I got a second butthole as a Christmas gift. So that was fun and made people laugh.

After some unnecessary complications, and laying around with a quarter sized hole open below my tailbone, I finally got in for a 2 hour consultation with the specialist surgeon on December 27th. He poked and prodded. He measured. He pressed. He recorded. And then he announced that I had a birth defect.

Exsqueeze me?

Yep – a birth defect. A postsacral teratoma to be exact. One that luckily is just filled with embryonic cells and hair fibers that never developed while I was in utero. (I think I would have died on the operating table had they pulled a fingernail, a tooth, or eyeball out of mine!)

To be more specific, while I was in utero, things didn’t come together properly in the butt crack area. A chamber developed and all my embryotic cells that needed to shed and move on got trapped. And thus began my journey after birth with a postsacral teratoma.

There is some debate throughout medical history as to how this actually comes about. On one side of the debate, you have the theory that this birth defect is actually the result of spina bifida. On the other side, you have the theory that this is a result of a residual caudal appendage gone awry. Whatever the cause, there was a failure of the two sides of my body to unite and my butt crack became the bearer of bad news.

Head on over to Part 3 – The Exciting Conclusion of my “Tail of Woe.” I share how you can actually help me as I deal with this tail of mine!

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