VIDEOS ... Click Here
Dear Dr. Kirkpatrick,
As I write this letter on behalf of my husband, John, we are on our way back to Philadelphia and then to our home in the Chester County, Pennsylvania countryside. I cannot help but reflect on the positive experience of meeting you and your staff these past two days. It has been one of only a few positive experiences we have had during the past seven years. John’s journey with RSD thus far, from his initial injury in 2002 until only recently, has left us disheartened and feeling hopeless. As many sufferers of RSD can attest, the medical community by and large has a long way to go to understand this life-altering disease. My sisters, Joanne & Diane, were also very impressed with you, your staff and your Tampa facility and the compassionate care given to John.
The following is a summary of the past seven years as we’ve tried, often in vain, to navigate our way through a maze of doctors and various providers (38 to be exact) before seeing you yesterday. It also introduces my husband, my friend and soul-mate, John Roach, (age 49). May his journey offer others who suffer from RSD and their loved ones, a measure of hope and support as well as encourage them “never to give up”!
In February 2002 John, then 42 years of age, was working in a physically demanding job for a utility company. He was descending a flight of cellar steps through outside “Bilco” doors when, suddenly and without warning, one of the wooden steps broke. He instinctively held tight to an overhead frame to prevent himself from falling. As a result, he felt an immediate pulling sensation in the left side of his neck and shoulder, a stretching injury some would later claim. He knew immediately that he was injured and went to an emergency room where x-rays were taken of his neck to rule out a fracture. He came home that day and told me it felt as though a railroad spike had lodged in his neck. He sustained what was diagnosed as a "cervical neck & shoulder strain and sprain" and was told to stay home for two weeks and rest.
Over the next 3 ½ years, he continued to work, yet it became harder and harder to do so because of the increasing pain in his neck and left shoulder, arm and hand. He began to have severe daily headaches and extreme light sensitivity. His jaw felt tight, and he became depressed as he watched his level of physical endurance dwindle. During this time, he saw many physicians, neurologists, internists, orthopedic specialists and so on. He was sent for grueling ‘work hardening’ physical therapy which just seemed to make everything much worse. He was advised to “work through the pain” in order to get better.
He describes his pain as burning, deep aching, shooting, constant and cruel. And so, we embarked on a seven year quest for an accurate diagnosis and effective treatment. He tried everything from simple muscle relaxers to opiates, heat, ice, acupuncture, myofacial release, TENS units, physical therapy, stellate ganglion blocks, epidurals and even surgery to remove a rib and some muscles in his neck (for what was thought to be Thoracic Outlet Syndrome). Ultimately in 2007, John endured implantation of a spinal cord stimulator. Although the stimulator was supposed to afford him substantial relief and stay in place for 6 years, it did not; and within three months, the leads actually dislodged and the entire device had to be surgically removed. We were both very frustrated. It seemed that, with every passing day, John’s pain level worsened and the area of the original pain spread.
John used to be known as a comedian and he was always able to make me laugh. Everyone found themselves laughing at his antics. He loves American History and is an avid Civil War buff. He loves art, especially that of Andrew Wyeth, a world famous artist who, until this past January when he passed away, had made his home within 20 minutes of ours. Before his injury, he could lift and carry anything, repair anything that was broken, climb ladders and poles, work in manholes, walk on rooftops and volunteer as a firefighter. He was always there to take care of a sick family member and cared for both his parents before they passed away. He enjoyed working on our property and planted many trees and gardens. He is a devoted animal lover and we formed a common bond early on in our relationship by rescuing animals that were in need of a good home.
We have four adult children between us and we miss not being able to travel to visit them. The simple act of riding in a car is excruciating. We must rely on family and friends to travel and visit us in our home, and often John will spend much of that time in bed. In the past seven years he has missed countless family events, such as weddings, funerals, christenings and holiday gatherings. Perhaps, most painful of all has been the inability for John to simply pick up, hold or play with his two granddaughters, ages 3 years and 8 mos. How do you explain to a three year old that you cannot play with them or pick them up like other family members can?
John had not been able to work since July 2005. In December of 2008 he retired on disability from a job he loved and took great pride in performing for 15 years. He can no longer even think about being a volunteer firefighter. We must pay someone to take care of our yard and a hire a handyman to fix what is broken in our home. He remains in bed or in a recliner all day. He is able to read and watch T.V. for a limited time. He needs about 10 pillows in bed to position himself in such a way that he does not move because moving hurts! The air from a ceiling fan hurts his arm and hand. The cold weather hurts. Any movement hurts, and despite my being a Registered Nurse, I cannot lessen his pain. We recently learned he has full body RSD as the pain has spread to all four extremities, including his face.
John’s real love is singing. He was gifted with a beautiful tenor voice and he sang for me and for many others, at birthdays, weddings (including ours) and family gatherings. He once promised me that if I would marry him, he would sing to me every day of my life! He had an amazing voice, so powerful it could (and once did) shatter glass! Now, this same man cannot cut his own food nor take a shower/bath without assistance. And, he can’t sing. Singing hurts. You must have good control of your breathing, your diaphragm & lungs and use your neck muscles. I have known John for 29 years; we have been married for 19 of them. I can honestly say that the day he was injured in February 2002, was indeed the day the music died.
We never lived a fancy lifestyle. Our time was spent with our family or with each other. A vacation for us was a long weekend at a B&B in the neighboring countryside of Lancaster County or a hike in a park, and once on a hot air balloon ride in Vermont to see the colors of autumn. Traveling to see you in Florida was John’s first plane ride since 1996 and needless to say, it was painful; but he was determined to explore the option of last resort, The Ketamine Coma.
After a careful review of John’s medical history and office records and an exam, you have advised us that John is a candidate for the Ketamine Coma Study in Monterrey, Mexico under Dr. Fernando Cantu. We understand this is a high risk procedure; but John believes the risks involved with the Ketamine Coma pale in comparison to living a life imprisoned in pain. For the first time, we have tangible hope that John may regain some of his past self and his life. We have hope that he may have a future free from pain, at least free from the type of pain that is consuming him. He is a determined and motivated man and will follow instructions and work at therapy and do whatever you and Dr. Cantu advise him to do. He finally sees a glimmer of light in this tunnel of darkness that has taken over his life all these years.
We are eternally grateful to you and to your staff for the warm welcome we all received during our visit to Tampa. You listened very carefully to what we had to say. We look forward to meeting Dr. Cantu in Monterrey who is held in such high esteem by all of his patients. We are confident that we are in good, capable, compassionate hands now, and we have hope. That is all we need to get through whatever challenges lie ahead. And then, perhaps the sounds of John’s music will once again fill the air. Until we meet again, stay well and thank you from the bottom of our hearts.
With Warm Regards,
Rosemary Di Giovanni RN & John Roach
Philadelphia, Pennsylvania USA
April 7, 2009
HOME | MENU | CONTACT US
The International Research Foundation for RSD / CRPS is a
501(c)(3) (not-for-profit) organization in the United States of America.
Copyright © 2005 International Research Foundation for RSD / CRPS.
All rights reserved.
For permission to reprint any information on the website, please contact the Foundation.