The Burning Truth

by Wendy Weckstein

Overview

After a seemingly insignificant fall off of his brother’s shoulders at a high school soccer game, thirteen-year-old Devin Weckstein was diagnosed with Complex Regional Pain Syndrome. The bright, musically talented, and energetic boy turned into a debilitated young man seemingly overnight. His parents sought every treatment possible, but no one could have imagined the challenges that lay ahead.

The Burning Truth chronicles the incredible journey of mother and son as they not only deal with chronic pain, but also attempt to find a cure for Devin’s illness. With a deeply honest voice, Weckstein relives their frustrations with physicians and the medical care system, the special education within the school system, the inconceivable misconceptions regarding pain in children, and the daunting world of medical marijuana.

Two tireless years of diligent searching later, the Wecksteins learned about Dr. David Sherry from the Children’s Hospital of Philadelphia. Despair turned to hope. During his five grueling weeks at the hospital, Devin underwent the aggressive treatment that would bring this courageous young man back to life.

Told from a mother’s perspective, The Burning Truth reveals the heartache, courage, and strength of the Weckstein family in their search to help Devin; it ultimately proves the power of family, love, and the human spirit.

Product Details

ISBN-13:	9781458202208
Publisher:	Abbott Press
Publication date:	04/04/2012
Sold by:	Barnes & Noble
Format:	eBook
Pages:	214
File size:	3 MB

Read an Excerpt

The Burning Truth

The Inspirational True Story of One Mother's Search for the Answer to Her Teenage Son's Painful and Highly Misunderstood Neurological Disorder, Complex Regional Pain Syndrome (CRPS)

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By Wendy Weckstein

Abbott Press

Copyright © 2012 Wendy Weckstein
All right reserved.
ISBN: 978-1-4582-0219-2

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Chapter One

An Innocent-Looking Tumble, and the Nightmare Begins

August 30, 2009

Devin and I are finally on our way to the Children's Hospital of Philadelphia. Staring out the airplane window at the beautiful sky, I wonder ... am I about to wake up from this nightmare? Is my fifteen year old son about to have his life back?

Devin is sleeping peacefully on my shoulder and I can't help hold back my tears; will he actually wake up in a few short weeks knowing what it's like to live again without pain? I smile as I think about this amazing vision but my insides are still tight with anxiety. Devin has been through so much; the worst kind of torture any teenager could imagine since he was just 13. I get so frustrated when I think that Dr. Sherry's program in Philadelphia had been there all along and we just couldn't find it. Two bright, medically educated parents, yet we somehow couldn't find the one program that may finally be the answer!

It sickens me to think about all that Devin's endured; 15 doctors, 14 medication trials, 12 surgical procedures, 4 horrible weeks in intensive care units where we had him receive risky treatments like ketamine infusions ... all because he was suffering and we didn't know what the hell to do! The amount of money wasted by us and our insurance company as he received one failed treatment after another was obscene.

I can't believe we were moments away from sending him to Germany to put him in a ketamine coma! Devin's pain was so unbearable - but a coma in another country - for the love of god, what were we thinking?

Who knew that medical marijuana would become his only reliable source of relief? What an outrageous experience that turned out to be. All I can say is, I'm glad those days are over!

What is totally amazing is that Devin is still on track with school. Thank goodness for some really great teachers, but I sure hope that I never come that close again to taking the school to hearing because of their insensitivity to special needs!

I think back at how truly horrific this has been for Devin - for our whole family - all because of a minor injury 2 years ago, that really should have been No Big Deal ...

September 15, 2007, was the night of the big soccer game between the northern Michigan small-town rivals Central High School and West Senior High School. Devin, who had just begun the eighth grade, had been invited to attend the game with his big brother Ethan, a junior at Central. What began as a kind act of brotherly love turned into the catalyst that changed Devin's life, all our lives, in ways we never could have imagined.

Ethan was Central High School's biggest fan. Inevitably dressed in black and gold face paint and matching wacky clothes, Ethan was that noisy, noticeable student in the fan section leading the other students in loud chants and cheers. His lack of inhibition and enthusiasm probably made him one of the best super fans the school has ever seen!

I often heard from friends who regularly attended these high school sporting events that they were more entertained by my son's high energy theatrics up in the bleachers than by the gripping game being played on the field below.

Devin, being an easygoing low-key sort of guy, was in great awe of his big brother's larger-than-life personality. Both he and his little sister Taylor, with her freckled face and long red curly hair, found their confident, crazy, outgoing older brother hysterical and entertaining.

Devin had been hoping to see his brother in action at one of these games and was thrilled by the invitation. He was in the middle of a marathon piano practicing session after school when, at the last minute, Ethan asked if he wanted to go.

He dropped his piano books in an instant and ran into the kitchen, asking, "Mom, can I please go to the soccer game with Ethan tonight?"

I was preparing dinner and hesitated. It was a school night after all, but that was more of an excuse than anything. The fact was, sending him off with Ethan and his big sixteen-year-old friends and their new sixteen-year-old driver's licenses would take some getting used to.

But, the evenings were still warm and summer-like and the pressures of school had not yet begun. The game would be over before dark, I reasoned. Besides, it warmed my heart that Ethan wanted to spend time with his little brother and that he'd asked him to join him at the big game.

"Sure," I said with a smile on my face. "Have a good time."

"Ethan," I yelled into the other room, "be sure to bring Devin home right after the game. Don't forget you both have school tomorrow!"

"Okay, no problem," said Ethan, as he ran into the kitchen and gave me a big kiss on the cheek. "We've got to go. The game starts in a few minutes and my friends are waiting outside."

"Thanks, Mom. I'll see you later!" Devin ran after his brother out the door.

* * *

Later that evening at the jam-packed field, Devin innocently hopped onto Ethan's shoulders as they both began cheering for the home team. It was a close match with the score tied at 2-2, and the students were exceptionally rowdy. Unfortunately, at a high point in the game, when a goal was scored and the fans were going wild, Devin lost his balance and tumbled off his brother's shoulders onto the hard-packed soil, landing flat on his tailbone.

After several moments, a bit stunned from the fall, Devin gradually rose from the ground. Finding that he couldn't sit on his sore behind, he spent the remainder of the game leaning against the bleachers. He wasn't about to tell his cool older brother, who had invited him to tag along, that he was hurting and wanted to go home. No, he would stick it out no matter how uncomfortable he was. He refused to be the party pooper, so instead of telling Ethan the truth when asked if he was okay, Devin yelled above the noisy crowd and told him he was just fine.

When the boys got home a couple of hours later, Ethan came bounding through the front door, still unaware of how much Devin was hurting. He told us about the great game while Devin slowly limped in behind.

As Devin told us about his fall, he chuckled, dismissing his pain as a funny outcome of making the wrong choice to cheer for the team while perched on his brother's shoulders.

We assured him he probably just had a nasty bruise around his tailbone that would most likely get better over the next few days. While we talked to him about the importance of icing the painful area and perhaps taking it easy during the upcoming week, Devin's gaze shifted towards the living room at his beloved baby grand.

"In the meantime," I told him with a smile, "a nice soft pillow for your piano bench might be a good idea."

Devin had developed a great passion for music at a young age and had started playing the piano when he was just three years old. He practiced and entertained us with classical and jazz pieces for hours each day, and until his tailbone was less tender, sitting on that hard wooden surface was surely going to be a problem.

Nothing pointed to a serious injury, but for some reason I had a sinking feeling inside as I watched Devin slowly walk to his room that night before bed. I could see that each step he took caused him pain, and I agreed with Sander that we should take him in for an x-ray if he was still limping in a couple of days.

Maybe it was just my motherly instinct, but I distinctly remember how truly uncomfortable I felt that evening. I hated seeing any of my children in pain. It tore me apart inside, and I always wished I could assume their suffering for them.

Little did I know this feeling would consume every ounce of my being for the next three years.

* * *

It quickly became evident that what seemed to be a very soar tailbone was something a bit more serious. Two days after his fall, Devin began to complain of tremendous burning pain traveling down his right leg. He could barely put weight on it, and soon he even began having a hard time lifting his right foot up to take a step.

The physical therapist in me roared to life. A quick assessment revealed that in addition to his extremely soar behind, Devin had significant weakness and pain down his right leg following a specific nerve pattern.

Instantly, that sinking feeling returned. This meant there was probably some degree of nerve damage from the impact of the fall. I was now officially worried, for I knew that nerve damage could be serious and even a mild case could take a long time to heal.

That weekend, Sander and I decided to take our still sore son to see my father, a family practitioner in a small town nearby. A good old-fashioned family doctor, I knew I could count on him to further assess Devin and give us some good advice.

He confirmed that Devin's symptoms pointed to some degree of nerve damage, but because this wasn't his area of expertise, he decided to refer us to a local specialist for a more thorough evaluation. He also made arrangements for Devin to receive an MRI the next day so we could get a better look at his spinal column.

By Tuesday, the results of Devin's MRI were back. The images were normal and revealed no damage to the nerves within his spine. This was good news, but we still kept our appointment with the specialist my father had recommended, a physical medicine and rehabilitation doctor in our hometown of Traverse City. Maybe he could explain why, nearly two weeks after his injury, Devin's pain wasn't improving.

* * *

Due to a recent cancellation, we were thankful to get an appointment with this physician for the following week. Unfortunately, this is where our gratitude ended. Upon meeting with the doctor, after waiting an agonizing hour and a half past our appointment time, he quickly introduced himself, asked Devin a few brief questions, and then began to perform a strength test on his right leg.

Within moments I began to feel uneasy. Having sat in the waiting room for such an extended length of time, I was amazed when the doctor rushed through Devin's history. I was at least expecting an ample amount of time to visit with him as a reward for our patience. Obviously this was not going to be the case.

I became even more uncomfortable as I watched him perform his exam. As a physical therapist, manual muscle testing is my bread and butter, and his technique was incorrect. By improperly assessing Devin's strength, he was seeing inconsistencies that could make it easy for him to conclude that Devin was faking his strength test. I bit my lip and decided to wait until the end of the visit to discuss this with him.

To my surprise, I didn't have the opportunity. The visit lasted at most 15 minutes, with no time to hear about the details of Devin's injury or his pain. The doctor told us Devin most likely had a nerve root contusion or bruise from the fall and that it would heal in eight to ten weeks. He prescribed a pain medication called Neurontin, abruptly ended the appointment, and scurried off to see his next patient.

Although the nerve root contusion was probably a good guess as to why Devin was experiencing such pain, especially since his MRI was normal, I left the office uncomfortable with both the evaluation and the way the appointment had concluded. The doctor had shown little respect for Devin, lacked competence in an important skill that is crucial for specialists in his field, and was quick to make judgments based on inaccurate information. It was difficult to accept this, but since I thought the diagnosis was probably correct and I knew he was a smart and respected doctor, I took a "wait and see" approach.

* * *

During the next few days, I continued to have a twinge of concern that something more was going on, but by now the Neurontin had begun to relieve Devin's pain, so I decided to let time take its course. What was the point, I told myself, in confronting the specialist? What good would it do?

I felt horrible that Devin would miss tennis, his favorite sport, for the next two or three months while he healed, but that couldn't be helped. In the meantime, I would have him do some gentle exercises at home so that he could keep that leg as strong as possible while we waited for his nerve root to heal. He still had to take it easy for a while until the inflammation went down, but the specialist had commented that complete rest was out of the question, and I agreed. This would only have encouraged Devin to avoid using his painful leg altogether. If possible, we needed him to continue using his right leg to keep it from getting weaker or developing the plethora of other problems that could occur from lack of use.

However, in spite of my best efforts, Devin's leg seemed to be getting weaker and weaker right before my eyes. The gentle exercises I had him doing just weren't enough. To make matters worse, he was now favoring his right leg all the time by limping, even hopping from one room of the house to another in order to avoid the terrific pain that came from putting weight on it.

So, with his physician's approval, I decided to increase Devin's exercise program. His injury was now more chronic in nature, and his doctor confirmed there was less worry about aggravating the nerve root.

The new program was more intense and took Devin a good 45 minutes to complete each day. It included riding the stationary bike, swimming at the local pool, and doing a whole series of leg exercises with stretch bands and light weights. Progress was slow to nonexistent, but Devin took his pain medicine and conscientiously followed his exercise program each day without complaint.

* * *

Throughout this period, life more or less went on as usual for the rest of the family. Sander's practice kept him busy, and Ethan was deeply involved in the high school musical, the varsity tennis team, his friends, his girlfriend, and the heavy academic requirements of his junior year.

Taylor, a fourth grader, was in the midst of soccer season, playing loads of tennis herself, and hanging out with friends. Our little Leonardo De Vinci also liked to spend countless hours sketching the human form in black and white and creating invention after invention in her special little notebook.

I kept a careful eye on Devin and his therapy while juggling our home, acting as glorified chauffeur for numerous hectic schedules, and working part-time in my new business. Fall in the northern Michigan resort community of Traverse City is lovely, and in spite of our busy lives, we all enjoyed the beauty of the twin bays that surround the peninsula we live on.

We were taken aback when, about six weeks after his original injury, Devin's pain began to worsen. He could bear even less weight on his leg now, and it was red and felt ice cold most of the time.

I was confused. Devin's pain should have been going away, his leg getting stronger. What was going on here? Why was his condition getting worse instead of better? Was this normal for a simple nerve root injury? Was there more nerve damage than we'd originally thought?

I began to wonder if we should have done an electromyography (EMG) or nerve conduction test.

For continuity's sake and because this was his specialty, we returned to the same doctor.

* * *

After another hour-long wait, the physician entered the room, said a quick "hello," and repeated the same improperly performed manual muscle assessment.

In hindsight, I'm not sure what I was expecting. All I know is that I was beginning to question my decision to return to his office. Puzzled by my own judgment, I sat in the chair opposite Devin as he lay on the exam table waiting for the EMG, a procedure that involved inserting numerous needles into his already painful and highly sensitive right leg muscles to measure electrical activity.

Not being the most insightful of physicians, the specialist abruptly began the test without telling Devin how painful it would be. Devin is a tough kid, but you could see from his grimacing face that he was shocked and unprepared for this degree of pain.

Puncturing his leg one needle at a time, I watched as the doctor silently twisted and maneuvered each needle deep within the muscles of Devin's right leg, offering no comforting small talk or even a clear explanation as to what he was doing. Fifteen minutes later, after he withdrew the last probe, the doctor read the results and concluded that the EMG was normal. This meant there was no sign of severe nerve damage and I took a deep breath of relief, but this good news only confused me further. I asked if the nerve root contusion itself could still be responsible for the weakness and worsening pain Devin was experiencing.

At this, the doctor pulled me aside and confirmed the premonition I'd had at our first appointment. Privately, he told me that although he believed Devin had some pain, he thought he was faking his weakness.

Knowing his assessment of Devin's strength was based on the inaccurate manual muscle test he'd now improperly performed twice, I carefully tried to explain what had gone wrong in his testing and why his assessment was inaccurate. I wasn't angry or rude, merely intent on getting to the bottom of why Devin was so weak and continuing to feel such pain.

In response, the doctor told me the visit was over. After quickly scribbling out a prescription increasing the dose of Devin's pain medication, he unceremoniously left the room.

I cannot describe my astonishment at this development. My 13-year-old son, who had never seen a diagram on nerve innervations, was able to confabulate to the last detail weakness in the fourth and fifth lumbar nerve down his right leg? (This, by the way, had taken me a number of late nights in the library to memorize while studying neurology back in college.) I figured I either had a prodigy who must promptly become a neurologist when he grew up, or this doctor was inept. Whether he didn't believe Devin or simply didn't know why Devin's pain was worse, we had a problem.

Forget this doctor's inaccurate perception of Devin's weakness; forget his insensitivity and lack of bedside manner. He was still a physician in a specialty that should be able to explain and treat this problem. Despite Devin's exercise program at home, his pain was worsening. Even more maddening, it was spreading – his entire leg had become so hypersensitive that if someone accidentally kicked, bumped, or even lightly rubbed up against it, his pain skyrocketed out of control.

Obviously, we needed a new physician. We needed someone who would listen closely to Devin's complaints and history. We needed someone who would trust Devin and believe in him. This doctor had made inaccurate judgments based on rushing and poor testing techniques; Devin had not and would not receive proper treatment from him. We needed a doctor who, if he didn't understand what was going on, would help us find the right specialist who could help our son.

(Continues...)

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Excerpted from The Burning Truth by Wendy Weckstein Copyright © 2012 by Wendy Weckstein. Excerpted by permission of Abbott Press. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Table of Contents

Contents

Complex Regional Pain Syndrome (CRPS) – a Definition....................xiii
Prologue A Story Worth Telling....................1
Chapter 1 An Innocent-Looking Tumble, and the Nightmare Begins....................7
Chapter 2 Two Steps Backward, One Step Forward Towards a Diagnosis....................18
Chapter 3 High Hopes and a Big Mistake....................25
Chapter 4 Back on Track and Looking for Answers....................39
Chapter 5 Our Trip to the Wine Country....................49
Chapter 6 The Emotional Roller Coaster Continues....................60
Chapter 7 Desperate Times Call for Desperate Measures....................72
Chapter 8 An Unexpected Bombshell....................82
Chapter 9 Medical Marijuana 101....................96
Chapter 10 A Stranger Moves In....................106
Chapter 11 Stumbling on the Answer....................117
Chapter 12 From Tears to Triumph....................131
Chapter 13 One Year Later....................149
Epilogue Looking Back at Lessons Learned; Looking Ahead with a Heartfelt Hope....................163
A Photo Collage – Devin's Journey....................173
Pediatric CRPS Family Resource Guide....................187
Acknowledgments....................195