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Column: Why aren’t phantom pains always painful?

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Editor’s note: News-Sun editor Todd Bailey was diagnosed with “agressive Sarcoma” in his lower left leg earlier this year. After chemotherapy and radiation treatments it was determined having the leg amputated two inches above the knee on Oct. 12 was the best course of action. Todd wrote what can be considered “part one” of this column which was published in the Nov. 4 edition of the News-Sun.

Technically it’s called phantom pain. The Mayo Clinic lists this definition, “Phantom pain is pain that feels like it’s coming from a body part that’s no longer there. Doctors once believed this post-amputation phenomenon was a psychological problem, but experts now recognize that these real sensations originate in the spinal cord and brain.”

But how can it be called a pain when I my left big toe itches?

Yeah, I know my big toe isn’t there anymore. Neither is my foot, ankle and knee. Gotta give a thanks to the ole’ “Big C” for that. If not treated in a timely manner, aggressive sarcomas in the left calf area can lead to an amputation.

That’s what happened to me six weeks ago.

But the Mayo Clinic’s definition doesn’t change my curiosity. When did a simple itch become a pain?

I have since broken up the title into two instances: phantom pains and phantom sensations. And phantom sensations are the damndest thing.

My first sensations started a day after my amputation on Oct. 12. First it was a tickle on my ankle. Then it was that big toe itch. And when you are on a morphine drip, the sensations seemed to amplify.

This new life of mine is absolutely astonishing.

A couple of days later I’m sitting on my hospital bed. My right leg is hanging off the bed with my right foot on the ground. My left limb is lying on the bed as the rest of my now departed left leg feels like its dangling off the middle of the bed.

As if I was sitting on the edge of a dock, looking onto the ocean’s blue horizon. Just swaying back and forth, left and right. The breeze tickles the hair on my leg.

Yes! I felt all of that! It’s just crazy.

I was on the phone with my friend Starla Jones describing what I was feeling and it was freaking her out. It was freaking me out! My brain was telling my right foot to stay on the floor, while my ghostly left foot was getting a suntan. If you know me, is there any part of my body that needs a dang tan? Um, no.

Now I’m not going to say all that I feel from my left missing leg is pleasant, and yes I consider the sensations of tickles and itches to be pleasant. The first time I felt an actual phantom pain was about 10 days after my surgery, during a shower session with my occupational therapist Gabrielle. I had OT every day for 90 minutes, but every other day my OT session included a shower.

I HAD JUST COMPLETED my 15-point process of shower preparation. There I am sitting on a chair letting the hot water fall on me when I feel this sharp nerve pain start in my left hip, run down my quad muscle, through my knee, calf and ankle and stop at the tip of my toes.

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“Owwwww!” I yelled. The pain was sharp and gone as soon as it started.

Gabrielle was on the other side of the shower curtain. “What happened?” she shouted. “Are you OK?”

“I just had a nerve pain shoot down my hip to my toes!” I exclaimed. “It was awesome!”

Now Gabrielle is a sweet, young occupational therapist who was a complete joy to work with. Soaking wet she probably weighs about as much as five kittens placed in a box.

But at that moment Gabrielle was as crazy as five cats in a box.

“You totally scared me!” she yelled. “I thought something bad happened.”

“Oh. Right. Sorry about that,” I said.

Thankfully, she quickly forgave me. Gabrielle’s other tasks for me during our OT sessions included balancing exercises, weightlifting and other core-building exercises that she could have used to make my life hellish if she wanted.

So how do you get rid of the sensations? Well according to my doctors and therapists (not the mental kind, that may come later), I am to rub and slightly massage my limb. Now that my 50 staples are out and my skin continues to heal, I am to start using different fabrics, from the softer cotton and silk, to some things more firm. I am to skirt these fabrics across my limb to help the nerve endings understand the signals they send to my left knee, ankle and that pesky big toe, aren’t really there anymore.

EVENTUALLY THE NERVE ENDINGS will see the big picture and stop sending the signals. When I get my prosthetic leg, which should be around late January, they should be gone.

Until then I get to look like a crazy man.

If you see me in at work or in any other private or public setting and I’m telling my leg, “Stop! It’s not there anymore!” please understand it’s me, not you.

And It’s not me that’s crazy. It’s just my new life that I’m getting used to.

On another note, today is a day of giving thanks and I wish to do that. I returned home this past Thursday to a slew of get well cards and gifts. Again, I am humbled by this community’s response to my situation. I am so thankful for your kind letters, well wishes and prayers. To the City of Hobbs staff, your notes of kindness touched my heart and thank you for gifts. To Starla, her friend Angela, Starla’s daughter Kelly and Starla’s co-workers at the Hobbs Municipal School administration building thank you for your card and gift. Now I have something to do during my off-time this holiday season.

Thank you to all of you who have called, texted, sent cards and letters. It would be foolish of me to say that what I am going through is easy. It’s not. I have had some pretty tough and painful days. But knowing that I have all of you in my corner gives me the motivation to put up my fists and fight another round. So thank you gain and Happy Thanksgiving Lea County.

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