Story Time: About a Girl

It was October 2005, the primary physician told her she was crazy.  “It’s all in your head. There’s nothing wrong with you.”  The pain on the right side of her neck was progressing. My neck hurts.  What’s wrong with me?  Complaint after complaint after complaint.  Her mother searched high and low for a doctor.  For anybody who could solve the problem. For anybody who could take the pain away.

Maybe a throat, nose, and ear doctor will know.  Under the knife a sample extraction from the right lymph node took place.  Was it cancerous?  It gave everyone a little fright. Benign.  Thank the Lord!!  Not. . . cancerous.

Half a year went by.  Still searching. . .  Still torturous. . . Why the pain?  It hurts!  Make it stop!  

“Neurologist, what’s wrong with my daughter?”  Let’s run some tests he says!  Cat scans, CT scans, X-rays, MRIs!  What more do you need?  They had it all!  He continues, “I’m looking for something more specific.”  Flex-Extension X-Ray of the neck.  

“Is there any chance you might be pregnant,” asks the X-ray technician.  The young girl scoffs and shakes her head furiously.  Defensively, the technician raises her hands to calm her, “I know the question is crazy, but it’s procedure. . . .Here’s what I want you to do . . . tilt your head all the way back . .   Alright, hold still. . . It’ll be over in no time. . . Okay, one more thing . . . tilt your head forward, chin toward your chest, but it doesn’t need to be touching. . .Very good. . . Okay, you’re all set.”

Ring, ring.  Ring, ring.  A phone call.  It’s the neurologist.  “You need to come in right away.  She has Os Odontoideum.  O-s O-d-o-n-t-o-i-d-e-u-m.  She needs to have surgery immediately.”  Say what?  Is he serious?  They were in desperate need of a second opinion. . . and fast!

“That’s a problem you got there.  There’s no doubt you’ll need surgery, but no immediate rush is necessary.  Let’s continue to watch it for now. . .”  says Dr. Neurosurgeon #2.

“Os Odontoideum is where the C1 vertebra is disconnected from the rest of the spinal cord. In your case, it is a floating bone and it’s knicking the spinal cord. . . .”  Pause. . . The parents gasp, the 16 yr old daughter still doesn’t comprehend. . . “Meaning… this is actually a life threatening situation.  If anything could happen to you, like a car accident, it would mean either instant paralysis or instant death.”

Nope, not waiting.  Surgery it is.  

She outweighed the pros and cons, but it created extra tension, stress, and anxiety instead.

ProCons
If successful, I won’t die or be paralyzedIf unsuccessful, the chances of death and paralysis are high
Pain-free**If I don’t do it, the chances of death and paralysis are high
I’ll be aliveWon’t be able to sleep on stomach anymore
 Won’t be able to turn head left or right/won’t be able to look over my shoulder
 Won’t be able to do certain activities ever.

The cons outweighed the pros, but being alive is better than leaving her fate up to chance.

Laying on the hospital bed awaiting for the arrival of Dr. Neurosurgeon #1 is a very hungry patient, while glaring at her parents who were munching on a muffin.  Two doctors came in and Dr. Neurosurgeon #1 introduced Dr. Neurosurgeon #2 as the main man who will be doing the operation.  Hold up!  What?  Her parents were pissed.  Who is this guy?  Why didn’t you tell us beforehand?  The operation was set.  No point in arguing.  Let’s get this done.

Waking up in the hospital bed, she frantically looks around the room at the many eyes looking down at her smiling.  The worried looks and happiness seen in her parents eyes. The coddling gestures of reassurance that everything is going to be alright.  The touch of her mother’s hand caressing her head.  The girl still frantically screaming out in pain. Tears flowing down her cheeks.  Shaking.  Scared.  Panting.  Begging for water. Dehydrated, that she was.  Thirsty to replenish the dry and achy sensation in her throat. The parent’s yelling at the doctors and nurses to give their daughter water.  “Not yet,” they said, “she’s still coming out of the anesthesia.”  Who cares! Give me the damn water!

Giving in to the constant nagging, the nurses patted a sponge filled with water to her lips. Finally.  A cup of water gently presses against her mouth as water slowly enters. Ahh… a release in tension.  A satisfying smile.

Understanding 10 minutes later why water should’ve been withheld.  The excruciating pain of hovering over the side of the hospital bed to vomit was unsettling.  Her parents holding her up.  Cradling the neck, like cradling a newborn.  Vomiting, crying, and screaming at the same time, the parent’s were helpless.  They didn’t know what to do.  It was agonypure torture.

What’s this feeling in between my legs?  I have to pee.  I have to pee, now!  The feeling of a long tube between the legs was awkwardly lingering in the forbidden area. The most uncomfortable area to let things dangle. “It’s a catheter, my dear,” the nurse says.  “It’s inserted in the bladder to remove the urine.”  Huh?  “Why? How does it work?” she questions.  “At the end of the long tube is a type of balloon with a bunch of little holes to transfer the urine into this baggie. . . See? . . . you are unstable to stand right now. . . that’s why you need the catheter.”  Nobody told me this!

“Only a couple nights in the hospital. . .Give or take 3 days,” they said.  “You’ll recover in no time,” they said.  “No need for a neck brace, you’ll be fine.”  “You’ll be back in school by next week!” they said.

No one, not even the doctors can account for how many days she stayed at the hospital. Her recovery was slow.  It took her a full week to get back on her feet.  She had to relearn how to stand and walk.  She felt like a dog on a leash having the nurses strap something around her waist to hold her up while she walked.  She stumbled a couple of times, leaning on the wall and nurse for support.  Nurses held her up when she peed on the toilet inside the room.

She lost all independence and privacy.  Couldn’t do things on her own.  Had to depend on others.  Sleeping on a king-sized mattress along with her parents.  Mom in the middle. Her mother even bathed her.

She didn’t return to school the following week like they predicted.  A whole month wasted. A whole month delayed.  Returning to school as a part time student, but hating to delay more school.  After the first week back, she begged her parents to let her go full time.  All this pain she dealt with and she pushed herself . . . forced herself to continue.  Her junior year, the toughest out of the four years in high school.   With the ACT exam, the junior research paper, and looking into colleges weighing in the back of her mind, she has to deal with the aftermath of the surgery that changed her life.  Within that year, her life flip-turned upside down.  A once happy, smiley, delicate young lady turned angry, upset, depressed, and unhappy.

August 2015 marks the nineth anniversary of the year that changed.  Acceptance of living with chronic pain is the young woman who yearns for the return of the light-hearted, happy, and smiley little girl she once knew.  But, more experienced, better, stronger, and healthier.  A woman who strives for something better.  A healthier lifestyle.  A beautiful heart with a beautiful mind.

If this was written for an autobiography.  I guess you’d be able to find this excerpt of the story in mine.

Not so little anymore, I have grown with more knowledge, more understanding, more gratitude, more patience, and more maturity.  I have experienced the highs and lows.  I don’t want to say I have fully overcome the struggles that I’ve faced.  Still trying to defeat the demons that torment me, but I am happy to say that I am moving forward, living a better life, and one step closer to whom I want to become.

If you’re interested, I’d like to open up my story a bit further . . the experiences I faced, the struggles I came across, the obstacles I hurdled over, and the present feelings and emotions of today.  This experience, although a hard story to tell or even read, is what makes me rebeccanne.  It’s a part of me that I am hesitant to share with strangers, but if it means I could help those who are struggling with chronic pain and depression, or for those who were diagnosed with Os Odontoideum, I think I have a good story to tell for those who want to listen.

a story about rebeccanne,
Story Time: About a Girl, Part 2

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