Author: Karen Steward. Copy Editor: Jill Ronsley.
Doctors: Bound by Secrecy? Victims: Bound by Pain! is the inspirational, true story of a mother and daughter's 14-year journey for a cure to an agonizing and often misdiagnosed, debilitating disease known as adhesions.
Melissa Steward was like any other happy, bubbly teen before illness struck at the age of 13. Doctors gave a diagnosis of Crohn's disease and prescribed corticosteroids as treatment. However, the powerful drugs proved futile against the constant pain, nausea and vomiting that tortured the teen day after day. Believing her daughter had been misdiagnosed, Karen Steward set out on her never-ending quest for an answer. Karen relates the riveting tale of their desperate cry for help and ultimate triumphant journey transversing the globe. Along the way, she provides a glimpse into the inner sanctum and frustrating maze of modern medicine.
Doctors: Bound By Secrecy? Victims: Bound By Pain! unravels the mystery behind adhesions. Since adhesions don't show up on standard medical tests, victims are often misdiagnosed, treated for illnesses they do not have, labeled as depressed-and left to suffer-often in crippling pain.
Surgery is the leading cause of adhesion formation, yet patients rarely are informed of the risk. Most ARD sufferers will spend seven to ten years wandering from one doctor to the next in an effort to find someone who will validate their pain and help put an end to the suffering.
Doctors: Bound By Secrecy? Victims: Bound By Pain! is a heartrending story, told with a sense of humor and wit, of a mother trying to find hope and healing for her beloved, ailing daughter. It is an inspiring story of perseverance-against all medical odds-and the final triumph over an incapacitating illness. The writing of Melissa's trying journey opens the windows of knowledge to adhesion related disorder, (ARD), forever unmasking this prevalent, yet medically hushed condition.
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More About the Author
Karen Steward is a wife, mother and grandmother who fought the medical establishment 14 years in behalf of her daughter, Melissa, who was suffering incredible pain. Believing Melissa had been misdiagnosed, Karen's unending quest to find the true cause of illness proved to be a worthy one that ultimately resulted in Melissa's complete recovery. Karen now dedicates much of her time to promote ARD awareness.
Customer Reviews
Most Helpful Customer Reviews
10 of 10 people found the following review helpful
5.0 out of 5 stars
Harmful Physician Attitudes, Bad Diagnoses, Corrupt Practices, and Ignorance Cloud the Search for Relief from Adhesions
September 22, 2007
Format:Hardcover
As I read this book, I was reminded of being a teenager with a blood pressure of 180/110 and a resting heart rate of 130 beats per minute. My mother and I consulted with a top cardiologist who couldn't figure out what was wrong with me and wanted to put me on tranquilizers. When my mother and I refused the medicine, he called her in and read her the riot act. This was particularly challenging because the cardiologist was one of my father's best gardening service customers. After shopping around with my mother to 12 more doctors, I finally found one who did the obvious and gave me a test to see if I had an overactive thyroid . . . which I did. Within a few days, I was better with medicine to slow down the thyroid production. Without my mother's obstinate pursuit of a proper diagnosis and cure, I probably wouldn't be alive today.
The same is true for Karen Steward and her daughter, Melissa. Unfortunately, Melissa was suffering from complications brought about by adhesions (where one organ is attached to another so they cannot move freely), a condition for which there is no simple blood test as there is for an overactive thyroid. These two brave women suffered through what my mom and I did for fourteen years rather than fourteen weeks, as was the case for me. I feel sorry for them.
Today, the better medical schools (such as the University of Massachusetts) teach physicians to listen to patients and take what they say seriously. The Stewards mostly found physicians who believed that teenage girls and women usually lie about their conditions . . . and just need something to bring down the swelling (cortisone-based steroids and to calm their nerves (antidepressants).
Research in the internet eventually led Ms. Steward to realize that her daughter could have adhesions. Even with that realization and recommendations from enthusiastic patients who suffered from adhesions, the Stewards found two dishonest physicians who operated on Melissa before finding one who was honest and had the right methods to help her . . . in Germany, far from their home in Texas.
If you have adhesion-related ills, you should read this book. If you have mysterious pains in your abdomen and pelvis, are nauseous a lot, have constipation, and have been told that your bowels are narrowed, you should be checked out by a professional who knows this area. The Stewards had success with Dr. Kruschinski, using a method for keeping surgery from causing new adhesions (surgery is the number one cause of adhesions). You can read information about Dr. Kruschinski and words of advice from him at the ends of the book. You'll also see vivid color photographs of what adhesions look like.
In young women where there have been no surgeries, adhesions can also occur due to endometriosis (growths like the lining of the uterus outside of the uterus). In Ms. Steward's case, she was prone to cysts that grew and dissolved. Each time that happened, there was a risk that adhesions would occur. But each physician they consulted said that there was no chance that Ms. Steward could have her symptoms based endometriosis. Right.
Undoubtedly due to concerns about libel suits, the physicians who did a poor job are described with pseudonyms. I would hope someone would open an investigation into those physicians. Several of them need to have their licenses yanked.
The book also points out the poor way that churches, Christians, friends, and neighbors can behave in dealing with someone suffering from a chronic illness. Even if you or your family doesn't have this problem, you can learn a lot about how to be a better person by seeing how the Stewards reacted to poorly considered words and behavior among those they considered friends and fellow Christians.
The Stewards kept going, in part, based on their faith in God. This book is testimony to the kinds of suffering that can be part of God's plan, just as it was with Job.
Bravo, Ms. Steward! You are a good mom and a good Christian.
The same is true for Karen Steward and her daughter, Melissa. Unfortunately, Melissa was suffering from complications brought about by adhesions (where one organ is attached to another so they cannot move freely), a condition for which there is no simple blood test as there is for an overactive thyroid. These two brave women suffered through what my mom and I did for fourteen years rather than fourteen weeks, as was the case for me. I feel sorry for them.
Today, the better medical schools (such as the University of Massachusetts) teach physicians to listen to patients and take what they say seriously. The Stewards mostly found physicians who believed that teenage girls and women usually lie about their conditions . . . and just need something to bring down the swelling (cortisone-based steroids and to calm their nerves (antidepressants).
Research in the internet eventually led Ms. Steward to realize that her daughter could have adhesions. Even with that realization and recommendations from enthusiastic patients who suffered from adhesions, the Stewards found two dishonest physicians who operated on Melissa before finding one who was honest and had the right methods to help her . . . in Germany, far from their home in Texas.
If you have adhesion-related ills, you should read this book. If you have mysterious pains in your abdomen and pelvis, are nauseous a lot, have constipation, and have been told that your bowels are narrowed, you should be checked out by a professional who knows this area. The Stewards had success with Dr. Kruschinski, using a method for keeping surgery from causing new adhesions (surgery is the number one cause of adhesions). You can read information about Dr. Kruschinski and words of advice from him at the ends of the book. You'll also see vivid color photographs of what adhesions look like.
In young women where there have been no surgeries, adhesions can also occur due to endometriosis (growths like the lining of the uterus outside of the uterus). In Ms. Steward's case, she was prone to cysts that grew and dissolved. Each time that happened, there was a risk that adhesions would occur. But each physician they consulted said that there was no chance that Ms. Steward could have her symptoms based endometriosis. Right.
Undoubtedly due to concerns about libel suits, the physicians who did a poor job are described with pseudonyms. I would hope someone would open an investigation into those physicians. Several of them need to have their licenses yanked.
The book also points out the poor way that churches, Christians, friends, and neighbors can behave in dealing with someone suffering from a chronic illness. Even if you or your family doesn't have this problem, you can learn a lot about how to be a better person by seeing how the Stewards reacted to poorly considered words and behavior among those they considered friends and fellow Christians.
The Stewards kept going, in part, based on their faith in God. This book is testimony to the kinds of suffering that can be part of God's plan, just as it was with Job.
Bravo, Ms. Steward! You are a good mom and a good Christian.
6 of 6 people found the following review helpful
Format:Hardcover
When I saw the book my first thought was: finally a book about ARD, a much neglected subject. It is not only a story about an ARD victim and her courageous mother, it is literature, very well written, captivating, devastating, funny. A book that fills a gap-it was time!
5 of 5 people found the following review helpful
By Deena Conner
Format:Hardcover
Powerful, enlightening, inspiring! This mother's completely committed journey to find relief and the answers to her daughter's suffering is nothing short of awesome. In doing so she has given, in her book, the help and the hope so desperately needed by those also suffering from adhesions. Help for those who may not even know, until now, what they are suffering from and the hope to know that their pain can come to an end.
Most Recent Customer Reviews
5.0 out of 5 stars
Great info on surgical solutions. Physical therapy isn't mentioned but...
Karen and Melissa have done a huge public service writing this book. Their family found surgical answers, I was able to find physical therapy that gave me my life back. Read more
Published 5 months ago by Veronica Y
5.0 out of 5 stars
The book that has changed my life - A must read!
I have been struggling for a long time with this invisible illness called adhesions that just does not seem to be acknowledged by the medical community here. Read more
Published 8 months ago by JFB III
5.0 out of 5 stars
a rare find
As someone who has suffered with adhesions for years and undergone 4 surgeries with no success...this book is a true gift offering hope to those of us seeking it. Read more
Published 9 months ago by sunshinesue
5.0 out of 5 stars
Seven years of ARD suffering
After suffering from pelvic adhesions for the past seven years, I certainly identified with the suffering Melissa endured for so long. Read more
Published 15 months ago by J. Taylor
5.0 out of 5 stars
Doctors: Bound by Secrecy? Victims: Bound by Pain !
Doctors: Bound by Secrecy? Victims: Bound by Pain!
This book is an amazing true story of a mothers fight to bring her sick daughter of 14yrs back to good health against all... Read more
This book is an amazing true story of a mothers fight to bring her sick daughter of 14yrs back to good health against all... Read more
Published 19 months ago by JET
5.0 out of 5 stars
Excellent book on ARD!
After suffering myself with ARD for 14 long years, I finally have hope! Thank you to Karen Steward for writing so eloquently a book that describes her daughter's heart-wrenching... Read more
Published 20 months ago by BMariaK
5.0 out of 5 stars
A Powerful Portrait of Faith and Healing
I began reading Karen Steward's book in order to learn more about Adhesion Related Disorder. As a nurse who has worked in reconstructive surgery, I had a basic understanding of how... Read more
Published 21 months ago by Anne C. Tourney
5.0 out of 5 stars
What an heart wrenching experience
I read the book "Doctors: Bound by Secrecy? Victims: Bound by Pain" to see if I could find answers for my daughter who also suffers from Adhesions. Read more
Published 23 months ago by Cindy
5.0 out of 5 stars
Doctors bound by Secrecy? Victims bound by Pain
What a wonderful and heartbreaking story of a mother who went to the end of the earth for her daughter. Read more
Published on March 17, 2011 by Amy Stertman
5.0 out of 5 stars
Adhesions - the Raw Facts
"Doctors Bound by Secrecy? Victims Bound by Pain!" is a challenging journey where fear, anger, loneliness and guilt are graphically depicted - and palpable! Read more
Published on November 25, 2010 by Andrea Maria Clarke
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