The year was 2005. I woke up and was pretty convinced that I had somehow managed to break my back in my sleep. My tailbone more specifically. My GAWD! The pain. I could barely move. Standing still was about the only position I didn’t feel overcome with nausea in.
Naturally, I called my chiropractor. After an exam, he declared me of sound body. Yep – my back was actually just fine. Back pain was not the issue here.
I was sure he was wrong. But he is never wrong. So I suffered through five unbearable days of lower back pain before I discovered “it.” My tail.
I remember trying to twist around to get a look just below my tailbone – you know – ah, come on….don’t make me say it. Fine. You win. I was trying to see the very tippy top of my butt crack because there was a little pea sized bumpy lump there. When I pressed on it, Rasta Daddy has to scrape me off the ceiling. Yes, it hurt that much.
What the heck was it??? My mind was racing. A tailbone cyst? This hard lump under my skin seemed way different than that.
I promptly called my dermatologist. I knew I could get in to see him quickly and he was THE master of unusual lumps and bumps. Before I could even properly drop trough, he knew exactly what the source of my back pain was. A cyst.
More specifically, a pilonidal cyst.
Fast forward to July 2008. I was about to have my tail removed, aka – pilonidial cyst surgery. I had spent three years battling the dang thing and couldn’t take it anymore. My body was growing defeated from round after round of antibiotics to ward of the infection this cyst was producing constantly. Sitting was a nightmare. I needed to sit A LOT for my job.
And then I found out I was pregnant.
There went the surgery. And HELLO 41 weeks of rear end torture! With every ounce I gained, I put more and more pressure on my tail. It was a rough period of my life but magically, after I gave birth, my tail took pity on me and really didn’t bother me for a year and a half. My doctor said it was the hormones. I didn’t care what it was from, I was just happy not to have a tail wreaking havoc on the chaos of new motherhood.
But then…it came back. And when I say came back, I mean IT CAME BACK LIKE A RABID BAT OUT OF HELL. (Sorry – only way to describe it so the masses understand).
November 2010 – After a few warning signs, I woke up with a fever and a baseball sticking out of my butt crack. No joke. This growth had abscessed horribly overnight and literally was a bright red and purple baseball sized lump. I had never experienced pain like this. And it was a weekend which meant my doctor wasn’t around.
Being a glutton for punishment, I suffered (not so silently) all weekend. I tried everything to manage the abscess myself but it got bigger and bigger. I was working my way towards a football on my butt by the time Monday morning arrived.
As luck would have it, my doctor was on vacation. So I ended up seeing the doctor on call who lanced that sucker and put me on a massive dose of antibiotics.
April 2011 – Pilonidial Cyst Surgery #1
The doctor removed a dime sized growth from just below my tailbone. It had managed to wrap itself all around my poor tailbone to boot. He stitched me back up, told me not to sit for a good long while, and put me on more antibiotics. We were hopeful that this would take care of my tail. But no – it only created Frankenbutt.
One year later and my tail was back in action. This time, I hit it hard with every natural remedy under the sun. Oregano oil, turmeric, castor oil packs, Thyme essential oil, gobs and gobs of magnesium baths, and a million other holistic remedies. I could feel the growth. It was a lot bigger this time and it seemed to be constantly infected. I lived with it for another year and a half and then, three years to the day when it first abscessed, all heck broke loose again!
This time, I got it draining promptly. I did it through my own efforts but nonetheless, Frankenbutt had taken over and my tail needed excising once again.
December 12, 2013 – Pilonidial Cyst Surgery #2
It was supposed to be a “tide me over” type of surgery. This surgeon knew that one day down the line I would need a really invasive procedure. However, he also understood the season of mothering that I am in and knows that an 18 month recovery time is not in the cards right now.
But the universe had another plans for me!
Learning About My Birth Defect
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 pilonidial 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.
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.
Surgery #3 (For a Postsacral Teratoma) and 18 Months Recovery
Ok – so we now know what this bad baby is. And that means what exactly?
Well, it means another surgery. There are possibly 4 different tumors in there.
The surgeon (who I love) is going to cut open a 3-4 inch hole and dig out 8 or so inches of tissue. He will literally scrape down to the bone and muscle. He is going under and around all of the diseased tissue. He will leave no stone unturned. Every little bit he can take out he will.
His goal is to make sure that not a speck of dust is left of these cells, tumors, and tissues. He will then LEAVE THE WOUND OPEN to heal from the inside out. Yes, I will have a huge hole in my butt. HUGE. Go ahead – joke. It’s ok. I’m already joking about getting an even bigger second butthole for my birthday.
This surgery will require 18 months to fully close. It will require a full 3 year healing period.
This surgery is no joke.
Unlike the last surgery, I will be fully knocked out this time. It will require the skills of two surgeons.
Recovery will be brutal. I won’t be sitting for over a year. I won’t be able to do the things I do every day while I heal.
I have to be meticulous about irrigating the open wound in an effort to keep it from getting infected. This means that I have to become a germ-a-phobe. Nothing can get in there which is a tall order considering the size of the entrance!
My life, my daughter’s life, even Rasta Daddy’s life just did a 180.
This surgery HAS to be successful. I have to do EVERYTHING I can to heal properly and completely. I cannot cheat. I cannot cut corners. I have to follow the doctors’ orders.
I don’t want to battle with tail after tail and surgery after surgery. I want this to be IT. Done. Gone. Adios.
My daughter has spent the last 3 years of her life with a sick mother. Her memories of me right now ALL center on my health issues. She was two when I had my first surgery. She is all too well aware of the pain and suffering I have been put through as a result of this. (I also went through a 19 month battle with ulcerative colitis after my first surgery).
I don’t want Tiny to think that this is all there is to life. Pain. Health problems. Tails.
On January 28th, my Tail became The Grand Canyon. Yep. The tail is no more.
My surgery went smoothly albeit I was grumpy and starving because my surgery was in the late day, I had not eaten for 18 hours, and then the surgeon was running late. This mama needs sustenance, especially when she has little people to feed all day long. Anyhoo – you didn’t come here to read about all that.
So the surgery…after the nurse insisted she could get the I.V. into me (after telling her my veins roll and collapse and have been compared to Gumby and could she PUHLEASE just get the anesthesiologist) and after the nurse collapsed the veins in one hand, the big guns, AKA the anesthesiologist, quickly and easily got my left hand to cooperate. Fun times. But at least we were ready to roll.
It was no easy task to knock me out. I just kept on talking and talking. Increase the drug cocktail and I was still blabbering away. But finally, after a mega dose of whatever-they-were-giving-me, I conked out (but not after I received ample warning that I would be a blubbering mess when I awoke.)
The surgery happened and when they brought me out of anesthesia, I was far from a blubbering goof ball. Nope. I told them exactly how much time had passed, did some math problems, told them about the bandage conversation I overheard towards the end of surgery, and pretty much shocked the snot out of the entire surgical team. Never had they given someone that much goodnight juice just to have them wake up as if nothing happened. Yep – I was raring to get the heck out of Dodge and so I did. I left everyone shaking their heads behind me.
I’ll spare you all the gory details here but those first few hours after surgery were the best ones I would have for the next few weeks. I had some significant challenges with bleeding. My body would not cooperate and clot properly. I suppose that I should have been more concerned but I felt “ok” considering how scary the bathroom looked at every bandage changing session.
That “ok” feeling changed quickly though. Four days post-surgery and I got pounded by the flu. Not the barfing kind. The other kind. The worst kind I could possibly have after a surgery in my hind area where I have to keep the area PRISTINE to avoid infection. Let’s just say that things were not good.
But guess what? I survived. But my body has been through heck and back. My body was kind of attacking itself. Because of the flu, the surgery site thought it was being invaded. It was in hyper overdrive, not really knowing what to do. Things were a mess. I was not healing. I wouldn’t stop bleeding. And then 7 days post-surgery, when the nerve endings returned, I was pretty sure I was just going to go and throw myself off a cliff. And no, I am not kidding. If I wasn’t a mother to a wee one, I might possibly have just gone through with my fantasy. The pain was THAT BAD. And no, pain meds weren’t touching it.
But here I am, one month to the day later. I have a smile on my face. The pain is now more of a persistent soreness. I have figured out exactly how long I can stand before things go south. I have figured out exactly how long I need to lay down to keep the oozing at an acceptable level.
I have been referred to a hematologist to address the blood loss. It is sort of a moot point for this surgery but should I ever cut my leg off with a chainsaw, we may have a problem. So my surgeon wants to get to the bottom of my lack-of-proper-clotting in the event that I need to clot.
I probably would not be where I am right now without the help of a lot of people. My online community has helped so very much. They were instrumental in helping me control the bleeding with lots of great suggestions for herbal support. Many online friends have sent me things I need and things to keep Tiny entertained. An amazing group of bloggers came together and collected enough money and sent over meals I was able to heat and eat this past month. Certified gluten and grain free meals! You all have no idea how much this saved me. And of course, my dear friend Lauren raised funds which helped pay for a bit of my medical bills.
When I wonder why I blog, I realize it is because of times like these, when a community near and far can come together to help someone. That someone just happened to be me this time. I am moved. I am humbled. I am grateful beyond words.
And here I am. Moving forward from the one month mark with optimism. I have teetered on the brink of infection but managed to stay infection free. While I still have a ridiculously long road ahead of me, I can visualize the light at the end of the tunnel. And wow – that light looks great.
Thanks for all the love, prayers, and positive energy you have all sent me. I am certain that it played a role in my healing as my body fought with all it had in those first three weeks. I should have crashed and burned but I didn’t. And it was because of all the support from YOU.
Much love and many blessings….