Defeating Scoliosis, Living with Autism
Article By: Wanda Brown
Article Date: 10/04/2007
“I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I’ve bought a big bat.
I’m all ready you see.
Now my troubles are going to have troubles with me!”
– Dr. Seuss
Today is the worst day of my life. The top half of my spine is curving. The bottom half curves the other way. On an x-ray my spine looks like the letter S, only backwards.
Dr. Roye says my curves are getting worse each month. He says this disease is called scoliosis. My ribs are starting to slide towards the other side of my body. My right lung is now smaller than my left one. When I play basketball, I get tired and need to rest more. And I’m beginning to lean to the side when I sit, stand up or walk, so I look a little crooked.
I’ve thought about this all night. Scoliosis is evil! And it’s destroying my life. When my mom, dad and I saw Dr. Roye to talk about my MRI test results and my bending films, he said “we don’t know why your curve is progressing so rapidly.” That’s why my condition is called “idiopathic scoliosis.”
I am autistic. A good thing about my autism is I like to know details about my special interests. Dr. Roye says my spine should be much straighter. Like the spine model in his office. Then he drops a bombshell on me. “Your curve is getting bigger, and is still progressing, which can become a problem in the long term. We can stop the progression.” He says he can do an operation called a “spinal fusion with instrumentation” to fix it.
Dr. Roye asks me if I have any questions. I can only think of one. I ask him “Will I live or die?” He looks me dead in the eye and says, “You’re going to live, MJ.” So I said, “Okay, you can do the operation.” My mom and dad look relieved. I like Dr. Roye. He’s cool.
But now that the day is here, I’m scared. And I’m angry! I know exactly what will happen to me. My mom asked to see how my spine might look after surgery. That’s when Dr. Roye shows us the most horrible thing I’ve ever seen, an x-ray of a creepy looking spine. The spine was straighter. But there’s a metal rod on both sides of it, attached by ten long screws that go through the boney parts. And each screw points in the opposite direction. What does Dr. Roye plan to turn me into â€“ a Frankenstein?
I don’t want my back cut open below my neck to the top of my behind, like a can of sardines. And how will Dr. Roye get all those screws into my spine bones anyway? He will use a drill and a screwdriver, that’s how!
The clock is moving fast, it’s almost 6 o’clock. Mom and dad are ready to leave the hotel to bring me to the hospital. My sister Crystal is on vacation this week. She’s still in bed â€“ sleeping like a baby! I really wish I were her right now.
We leave the building, cross a busy New York City street, walk into these wide revolving doors, and take an escalator up to the second floor. The man behind the desk is wearing a blue uniform. He gives my mom this small black gadget. Like the one you get sometimes at the Olive Garden while waiting for a table. Before we can get to those empty chairs in the corner, it vibrates and lights up. We both jump, startled by it, as we all head over to an empty registration booth.
The lady begins asking me lots of questions. “What’s your name, young man? Address? Date of birth?” I choose not to answer them. A good thing about my autism is I can talk when I want to, and won’t talk when I don’t! No, wait. I don’t want to make these people here mad at me. So I say “I’m feeling a little nervous right now,” and pull my hood up over my head to hide. My mom takes my hand and answers the questions for me.
Things are moving way too fast. Now I’m wearing a plastic bracelet with my name and Dr. Roye’s name on it. Dad stands up, puts his hand on my shoulder and says “Okay, Buddy. It’s time to change out of your street clothes and into a hospital gown.” I know the deal. I went on the hospital tour, and watched the movie. Once I put on that hospital gown and shower cap, I am one step away from the knife!
When I get to the holding room, I look up and see Crystal is here. “What’s up?” she says and stands beside me at the examining table. She’s the closest thing I have to a big brother. We’re both Leo’s. I’m glad she’s here. Only one family member can go with me inside the operating room until I’m put to sleep. I think I’ll choose her to go in with me.
Oh no! The operating roomâ€¦! I can’t get these thoughts of surgeons wearing scary masks holding knives, drills and screwdrivers out of my head. Matt, my counselor at school, calls when I do this “perseverating.” Sometimes certain words, phrases or my thoughts get stuck in my head like an old scratched record.
“I can’t take it anymore Mommy! I can’t stand hearing those loud drills. And using screwdrivers to turn those screws inside my spine has got to hurt! Ow… Owâ€¦!” She gets up from the chair, reaches into her bag, and hands me the self-portrait I asked my friend Joe to draw for me, “MJ Defeats Dr. Scoliosis.” The drawing is inside a plastic sheet cover. I can hear my tears hit the page as they fall.
“MJ, going through this process and having surgery is the only way we know how to defeat scoliosis. I know you are scared. We are too. You will need to be brave and strong in order to fight this disease. I promise we won’t leave you here alone. We’ll be here day and night to help you get through this.”
Staring at my picture a while, thinking about what my mom says makes me feel calm. I love my cartoon! I am kicking the evil Dr. Scoliosis’ butt, with his crooked spine. He runs away in pain, defeated. And I am back to my normal self again.
Surgery is the only way to defeat scoliosis. And the time is now. I’m ready for battle. I look down at my picture. “You might have me down right now. But I’m not out, man.”
Scoliosis is a progressive condition causing the spine to curve or twist into a “C” or “S” shape. There are many different types of scoliosis. Patients with scoliosis are usually asymptomatic. Scoliosis appears most often in adolescent girls and may run in families. 80-85% of scoliosis cases are diagnosed as idiopathic, meaning there is no underlying condition or cause for the spine deformity. Scoliosis does not result from carrying heavy items, athletic activity, sleeping/standing postures, or minor lower limb length discrepancies.
Scoliosis is reported to affect two to three percent of school age children in the U.S. and costs an estimated several billion dollars in surgical treatment each year.
National Institute of Health, Texas Scottish Rite Hospital for Children
A bright light is on me inside the operating room. Everyone is moving fast, like busy ants in an ant farm. They’re fussing over me. I am a movie star!
My head feels woozy. It’s hard to keep my eyes open. There’s a strange looking table near me. Something about this table worries me. “What’s that, Crystal?”
“Oh, it’s just a table.”
“Is it for me?”
Crystal looks like an astronaut. She’s wearing a white spacesuit, a cap and a mask on her face. Crystal isn’t answering my questions. “Are they gonna put screws in my back, make me a monster?”
“No, they’re going to use special tools.”
“What kind of special tools?”
“Ask Dr. Roye.”
Dr. Roye isn’t wearing a mask. He’s talking to a lady sitting in front of a computer. He walks over to me, but says something to a lady doctor standing behind my head. It’s getting harder for me to talk. I’m so sleepy. But I want to know what they will do to me in here. “Hey, Dr. Royeâ€¦ Are you gonna use a knife on my back?”
“No. We use scalpels.”
“Are you gonna put screws in my back, make me a machineâ€¦ a robot?”
“Yes, I am going to use screws.”
Oh, my God! “I don’t know about that screwdriver, Dr. Roye. He pats my leg and says, “I won’t use one then.”
A mask is put over my nose. It smells funny. I don’t want it on me and I fight to take it off. Someone takes the mask off my face. There’s something thick and white running down my IV.
After months of stressful anticipation, and careful planning, arrangements for medical transportation, durable medical equipment, home care, a personal care aide, home schooling and related services, have all fallen into place. And now the big event is about to happen on schedule.
Dr. Roye pulls me and Marlon aside to talk about the operation. He says thought was given, along with his colleagues on where the spinal fusion should end, vertebrae L1 or L2. He feels L2 is clinically better to stop the compensatory curve from progressing, and allows more lumbar spine vertebrae, in the small chance there’s a need for surgery as an adult.
Just a few minutes ago, we met the anesthesiologist and her assistant. An IV line is placed into MJ’s right arm and another into his left wrist. A shot of valium is injected through the IV to keep him calm. Heart monitor leads which look like white round stickers are placed in several areas onto his body. Due to sensory issues in autism, MJ can tolerate very little touch.
Special permission is given so that instead of his parents, Crystal can go inside the operating room with MJ as he wants her to. Finally, they’re ready to wheel MJ into the OR. “May I kiss you, MJ?” I ask. “No, just a hug.” I hug him gently, not wanting to let him go. But it’s his dad’s turn, so I must. I am upbeat and excited. “God bless you, MJ. See you soon!”
A short while later, I’m surprised to see Crystal with Dr. Roye out of the OR walking towards us. Crystal appears a bit stunned. Dr. Roye says easily, “MJ’s asleep. See you in 6 or 7 hours. I’ll come down to talk to you. He should be in the Pediatric Intensive Care Unit overnight, and in his room tomorrow. I’ll take good care of him.” His words reassure me. I do trust this physician with our son. I take both his hands. “God bless you and your team, Dr. Roye.”
Crystal is quiet. Maybe she shouldn’t have gone inside with MJ. “What happened in there?” Marlon, Crystal and I move closer to one another and talk quietly. Our circle is in the place where MJ had been just a few minutes ago. She says that you can tell the OR is prepared for a major scale surgery, and describes it for us. She tells us what MJ did and said. She is bothered by Dr. Roye’s honesty in answering his questions. She worries that he fell asleep afraid. No longer excited, no one in our huddle wants to leave him. A nurse comes over and gently reminds us that the family waiting area is on the second floor. “God he is yours. He is in your hands.”
Inside the elevator down, no one speaks as we leave the third floor. Until a group of residents get on, talking enthusiastically about their day. Back in the waiting area, we find an empty spot among several other family members and friends, leaving some open space between chairs for privacy.
The hours go by slowly. Whenever I think of MJ upstairs, and all that could possibly go wrong, such as neurological damage, blood loss, infection and failure of the bones to fuse properly, low flames of panic flare up inside me, threatening to sear my soul. In order to keep myself from having a panic attack, I take a special note out of my pocket and read it over and over again. “Try to remember that God has great plans for MJ. And that He will hold him in His arms, and guide his surgeon’s hands. He will provide the strength that both MJ and your family will need for the recovery.” The note is from my young friend, Stephanie. I met her online at Yahoo Answers during her recovery from a successful scoliosis surgery.
Marlon is reading a magazine. Crystal is playing sudoku. Finding it impossible to concentrate, sometimes I watch NY1 on TV or the other families around me. Like us, each group of family and friends are doing various things to pass the time away. I envy them. I wish someone from our extended family were here to support us. But they’re not.
As morning becomes afternoon and turns into evening, the number of groups in the waiting area grow smaller. Whenever a surgeon approaches a family to report about their loved one, we all listen discreetly, praying for our news to be good news too.
After waiting nearly seven hours, we begin to get edgy and nervous.
“What time did MJ go into OR?”
“Around 11 o’clock.”
“Okay. He should be out by 6 o’clock, 7 the latest.”
Someone is calling my name. “MJâ€¦ MJ wake up! Wiggle your toes for me.” Something pointy is scraping up and down my foot. “Can you feel this?” I nod my head. Yes, I can feel it. My back! What did they do to my back? I can’t believe they did this to me. My face feels funny. I can hardly open my eyes. My lips are sticking together.
Finally, a surgeon still dressed in blue OR scrubs, walks towards us. I follow him with squinted eyes to study his face. Yes, it’s Dr. Roye! He sees us too, and smiles. “MJ is doing fine. There were no complications and no need for a blood transfusion. His surgery is successful with 100% correction. The thoracic curve was so flexible and easy to correct I decided to fuse at L1 instead of L2. He’s awake and will go directly from OR to PICU. If he does well he’ll be there for a day or two. I shot a big dose of medicine into his spinal cord so he didn’t wake up in pain.” We are ecstatic! “May I give you a big hug?”
We must wait a while longer before MJ is out of OR and settled into PICU also on the third floor. When we walk into the room, MJ is lying on his left side, hitting the side of his head gently with his fist, crying softly, and whispering to himself about his predicament.
Seeing MJ for the first time in PICU is a flood of relief, yet it’s heartbreaking. MJ’s head is larger and his entire face is awfully swollen. Marlon and Crystal are visibly upset to see him this way. Stephanie warned me that facial swelling is common during a long surgery.
Although I am prepared to see his head and face so puffed-up, I am unprepared for how small and vulnerable he is now. MJ has an IV bottle and other lines attached to him. He is hooked up to machines that regularly record his vital signs. There’s a drainage tube leading out of the incision from his back into a plastic container, already nearly half filled with blood. A catheter is inserted for him to relieve himself.
Stephanie once shared with me, “The hardest thing for me to get used to was my loss of basic skills. Walking, standing, sitting, lying down, and rolling over were all things I had to learn again.”
Mommy and daddy found me! I’m so happy they’re here. “My backâ€¦ what did they do to my back?” Crystal walks over to me and says, “Dr. Roye fixed it. You did it MJ. You defeated scoliosis!”
“My backâ€¦! I have a giant spider on my back. It’s killing me.”
School Scoliosis Screening Guidelines
The purpose of scoliosis screening is to identify students with spinal deformities that may cause impairment of the body’s range of motion and endurance, and in advanced stages, back pain and functions of other parts of the body. In New York State, Education Law, Article 19, Section 905 and the Regulations of the Commissioner of Education, Sections 136.1 and 136.3, require schools to provide scoliosis screening at least once in each school year for all students in grades 5 through 9 (age 8-16).
New York State Education Department, Statewide School Services Center
A special thank you to the forum members at www.SpineKids.com for their online support, information and prayers.
For information on scoliosis contact the National Scoliosis Foundation at
1-800-NSF-MYBACK (673-6922) or visit their website at www.scoliosis.org.
Visit www.child-autism-parent-cafe.com for practical ways to help, plan and manage daily living with autism.