Self-Education - By Doug Strott
“You can get all A's and still flunk life.” - Walker Percy
Over the years I have tried to educate myself as much as possible about my spinal condition but it truly has been a challenge, especially at the time of my diagnosis.
Access to information in the early 80‘s was not easy and fluid like it is today. Remember, it was the 80‘s and 90’s, the internet wasn’t developed yet. We had this really simple PAPER classification system called the Dewey Decimal System at our local library. If you don’t recall this, then ask someone over the age of 40 and they will tell you all about it. Fun time had by all who used it.
Regardless, it was important for me to discover as much as possible about this weird thing called “Scheuermann’s Disease”. I am a stickler for details so understanding what my body was going through was very important for me. Heck, like I’ve said before, there wasn’t much information, only a couple of paragraphs here and there, so I didn’t learn very much at first, so how bad could it be? I was 17, invincible, and had my whole life ahead of me.
Most importantly, though, the diagnosis and desire to learn more about SD got me started in wanting to learn more about my body. This was really important because it forced me to start LISTENING TO MY BODY.
What was happening to my body? As time would teach me, I couldn’t take the steadily worsening back and radiating leg pains for granted. They were here to stay, and as time taught me, they intensified significantly, especially with certain activities. Sadly, I knew some of my favorite sports were no longer in the cards for me.
As my pain increased it became clear that I needed to find doctors who understood my condition and were willing to help me. This sounds crazy, but there have been MANY doctors over the years that told me that Scheuermann’s Disease was BENIGN.
Benign: of a gentle disposition, gracious; showing kindness and gentleness; of a mild type or character that does not threaten health or life
Does anything about Scheuermann’s Disease seem benign? I am not going to dwell on the doctors that chose to label me, or the disease that caused me so much pain in my life, benign.
But, as my sister Dana told me, “Dougie, your job is to live with as much grace as possible and not be grumpy or grow bitter.”
Well said Dana.
Oh well, back to how I choose my doctors.
Honestly, finding my doctors has been a fairly simple process. For some reason I have been blessed with phenomenal Primary Care Physicians (PCP). They have all taken great care of me, been knowledgable about Scheuermann’s Disease, and completely understanding and sympathetic of my pain. Their brilliant care has also helped me by referring other specialists to me (i.e. Neurologists, Rheumotologists, Orthopedic Spinal Surgeons, Neurosurgeons, Pain Specialists, Physical Therapists, Counselors) especially as the disease has progressed later in my life.
In fact, that was how I was first diagnosed with Scheuermann’s Disease when I was 17. My family physician (Dr. Richard Wright of Pittsburgh, PA, now retired) referred me to an orthopedic specialist, Dr. David Hartmann. Dr. Hartmann recognized the signs or Scheuermann’s Disease and started my treatment.
“A person who is nice to you, but rude to the waiter, is not a nice person.”
The first questions to my PCP about the specialist were, “Do you know him/her? Good person?”. I figured if I was potentially going to trust this person with my life I better like the him or her. I could find a great deal out about my treating physician online doing a Google search, like:
Grades by patients
Current medical group and insurance carriers
Charitable organization affiliation
However, If I didn’t like them I NEVER chose to be treated by them. Period. It didn’t matter if they were the best in their field. I didn’t want to be seen a doctor if they were an ass$#%^. I have always looked for information about my treating doctors and formed my own opinion about them from my first appointments.
First appointments were very important meetings so I always went with my girlfriend to meet with the doctor or surgeon. Two eyes are better than one. We would compare notes after the appointment and if we didn’t like the doctor I would ask the PCP for another referral. It is not like I am a snot or difficult to get along with, but if somebody is going to treat me for any length of time, I would prefer to trust them unequivocally AND like them. Just my preference.
By the way I ALWAYS recommend taking a second person to appointments when surgical procedures are to be discussed. I’ve found that once the word “cut” was said, my brain turned off and that was all I heard from that point on. My girlfriend had to let me know what happened the rest of the appointment when we got home.
As I have said before, I am “alive and limping” due to the expertise and care of some very special people. It is not just medical and technological advances that have made these medical professionals great. It is how these wonderful people (doctors, nurses, physician assistants, office managers, clinical staff, and so on) utilize those advances at various stages of my treatments, while showing their genuine concern for my well-being, that truly sets them apart.
You may be thinking that the people using these advances are physicians, but you would be wrong. What about the office manager that implemented a new scheduling program that allowed me, and other patients, to be seen by the doctor sooner? Or the appointment scheduler who wouldn’t let the doctor go home because my pain was so excruciating that they held the office open longer just to see me? What about the PA who continually complained that the office needed a new (and very expensive) piece of equipment in order to perform a new procedure in the office without anesthesia; thus allowing me, and so many other patients, to avoid added costs associated with a hospital? These are the people who have shown me so much kindness and genuine caring over the years and made the hurt a little less painful, and the pain a little less hurtful. Thank you so much.....
“In the sick room, ten cents' worth of human understanding equals ten dollars' worth of medical science.”
Martin H. Fischer
I want to thank some of the doctors who have helped me live through my battles with Scheuermann’s Disease and Severe Degenerative Spinal Arthritis. They are listed next and I can’t thank them enough for their skill, but also for their humanity. These doctors are not only excellent in their fields, but they are even better people.
Dr. David Hartmann
Pittsburgh Bone and Joint Surgeons, Jefferson Hills, PA
Dr. Hartmann was the first doctor to diagnose me with Scheuermann’s Disease in 1981. He continues to treat my parents and consistently asks them about my health.
Dr. Jon Sieber
The Indiana Orthopaedic Center, Indianapolis, IN
Dr. Sieber was able to repair my arthritic shoulders but he also showed great concern for my overall health. He is a great surgeon but an even better person.
Dr. Carl Sartorious
Goodman Campbell Brain and Spine, Indianapolis, IN
After trying multiple treatment options (which failed) and putting off my first surgery as long as possible, Dr. Sartorious performed a foraminal laminectomy at L5 to relieve pressure on the nerve roots that was causing a great deal of site and leg pain. He also was the first doctor to honestly tell me how bad my back was (“Doug, you have the back of a 70 year old.”) and what to expect in the future. He was great with my parents in explaining my surgery and had a wonderful bedside manner.
Dr. Michael Baach
Parkside Internal Medicine, Noblesville, IN
Dr. Baach was my family doctor when my back problems started to manifest. He spent a great deal of time with me and helped with treating the related ancillary issues such as insomnia and depression. What a great person.
Dr. Michael Condit
Rheumatology Associates, Indianapolis, IN
Dr. Condit was very thorough, ordering a number of tests to identify my pain level and associated problems (i.e. insomnia, bruxism). He developed a plan using various drugs that would help me live more comfortably. In fact, I continue to use the majority of these prescriptions today. He is a brilliant physician and a caring person.
Dr. Jerry Hood
Austin Diagnostic Clinic Internal Medicine, Austin, TX
Not much that I can say about Dr. Hood other than he is probably the most brilliant diagnostician and favorite family physician that I have ever had. He was with me during the most difficult time of my life (the majority of my spinal surgeries) and helped me survive both physically and mentally. Dr. Hood is a great doctor but more importantly, he is an amazing man. Funny, personable, open, patient, and a genius. Many thanks, Dr. Hood.
Dr. Richard Tallman
Austin Diagnostic Clinic Neurology, Austin, TX
I was referred to Dr. Tallmann (Neurologist) by Dr. Hood while in Austin. The hope was that Dr. Tallman would be able to help with the radiating nerve pain that I was experiencing as a result of my spinal problems. Dr. Tallman was very thorough in researching my health history, and when I told him that I had Scheuermann’s Disease, he hung his head and dropped his pen. He told me that he has seen patients with Scheuermann’s Disease who are experiencing significant long term pain and mobility problems. This was the FIRST time that ANY doctor has recognized that the disease had the potential for severe long term negative effects. This was also the initial catalyst for me to create the website and encourage the medical community to begin long term case studies on Scheuermann’s Disease.
Dr. Viet Tran
Spine and Rehabilitation Center, Austin, TX
My first cervical spine surgery was performed without success, so I sought out other doctors for 2nd and 3rd opinions. I asked a number of people in the medical and insurance fields to recommend either an orthopedic spinal surgeon or neurosurgeon and who would THEY use if they had to have spinal surgery. The same name came up twice: Dr. Viet Tran. He is an excellent surgeon, is very thoughtful, and has an excellent bedside manner (not to mention he is hilarious). The medical group also has an excellent physical therapy department (www.spinecenter.cc/vines.htm).
Dr. Jason Lowenstein (orthopedic spinal surgeon)
The Advanced Spine Center, Morristown, NJ
Dr. Lowenstein formerly practiced at Spine Austin in Austin, TX, where I was treated. He has since moved to The Advanced Spine Center in Morristown, NJ.
I owe a great deal of gratitude to Dr. Lowenstein because he most likely not only saved my mobility, but he also saved my life since he performed 3 of my major spinal surgeries (one lumbar, two cervical/thoracic). It was well known in central Texas that Dr. Lowenstein received only the most difficult spinal cases in central Texas which were referred to him by other physicians. In fact, Dr. Tran referred me to Dr. Lowenstein when it was clear that I would need additional surgeries after my initial lumbar fusion.
Dr. Lowenstein taught me a great deal about my spinal problems as well as the surgeries that would be necessary in an attempt to halt or slow the degradation and erosion. He is patient, thoughtful, respectful, and a brilliant spinal surgeon. Since my surgeries, doctors who have reviewed my spinal films (i.e. x-rays, myelograms, MRI’s) have remarked that they have never seen such perfect placements of hardware (screws and rods).
Even though Dr. Lowenstein is located in NJ and I am in Pittsburgh, he is still my orthopedic spinal surgeon. I have traveled to NJ for the sole purpose of an appointment with him, and he will be performing any remaining spinal surgeries. If you need an expert spinal surgeon, I highly recommend seeing Dr. Lowenstein. He is quite simply the best (as well as an Active Fellow of the internationally renowned Scoliosis Research Society, www.srs.org).
Dr. Paul Li (anesthesiologist, pain management)
Austin Pain Associates, Austin, TX
Dr. Li is a very patient, laid back, doctor with wonderful listening skills and a great sense of humor. I always looked forward to seeing Dr. Li and sitting down for a good conversation. He also taught me that mental health was just as important as physical health and was the catalyst for me to work with a counselor (he also referred me to Dr. Lepore, see below).
Dr. Bruno Lepore (pain counselor, psychotherapy)
Pain Counselor, Austin, TX
Dr. Bruno was SO helpful to me in dealing with my chronic pain. There are so many things that go through your mind when you are unable to work and more or less unable to “earn your keep”, especially when that is all you’ve done your entire life. Dr. Bruno helped me realize that my worth was not equal to my work, which I had equated for such a long time. He also helped me deal with my anxiety in groups of people. It had become difficult carrying on conversations that were not centered on my disability and he made me realize that I did have something to offer. I encourage everyone with chronic pain to seek counseling and to find an expert that you trust.
Dr. William Coyle (internal medicine)
Primary Care South, McMurray, PA
Dr. Coyle became my family physician (GP) when I moved to Pittsburgh from Austin, TX. And boy, am I better for it!! Dr. Coyle was referred by the Pharmacy Assistant (thank you Mallory) at a local drug store. As I have said before, God blessed me with amazing people to be a part of my life and to help me through life’s twists and turns. Dr. Coyle and I hit it off immediately. We have similar likes and dislikes and he spends so much time with me during appointments that I feel badly he may be keeping other people waiting!! But I have a feeling that he does this with all his patients. Dr. Coyle is copied on all of my medical records from other specialists (i.e. Orthopedic Spinal Surgeon, Pain Management, Neurosurgeon) so that he can oversee my complete health care and keep my entire file updated. Couldn’t be in better hands.
Dr. Hani Gabriel (anesthesiologist, pain management)
Dr. Stephanie Le (anesthesiologist, pain management)
Gabriel Pain and Spine Center, Pittsburgh, PA
I was referred to Dr. Gabriel by Dr. Coyle and it has been a true blessing. Dr. Gabriel approached my pain aggressively, trying to get it under control. He spent a great deal of time with me, asking me about my medical history, current physical therapy regimen, previous courses of action of pain control, and my current experience with pain (i.e. when it is worst, when it is tolerable, the types of pain). He then set a course of action, explaining the process and the reasoning behind each. Treatment started with CT scans, bone scans, and MRI’s. This was followed by a number of non-invasive and invasive procedures. Each procedure and corresponding result was monitored and assessed in its effectiveness. This was the first time that I felt hopeful my pain would be managed successfully. A great thing about this process was not necessarily finding a pain solution, but rather, to exclude treatments that did not work. We all know that there are limited treatment options for pain management, so identifying unsuccessful treatments makes the list of optional treatments smaller and smaller. This is not to say that we tried each option just for elimination purposes. Each treatment was discussed in great detail, from possible side effects to pain associated with each procedure to potential success. Unfortunately, Dr. Gabriel had to take a leave of absence due to some very important personal matters and transferred me to his practice colleague (Dr. Stephanie Li, see below) for future treatments. Dr. Gabriel is a wonderful human being; caring, unselfish, funny, brilliant, spiritual, and has devoted his whole life to caring for others.
**(Sadly, Dr. Hani Gabriel passed away in January of 2013. The world will truly miss his smile and wonderful gift of healing. I will miss my friend terribly.)
I am not going to lie to you. Dr. Gabriel’s departure from the Spine Center was difficult. We were friends and he was a ray of hope in finding an eventual relief from pain. However, before his departure, Dr. Gabriel found a phenomenal doctor to take over his practice during his sabbatical, Dr. Stephanie Le.
Dr. Stephanie Le (anesthesiologist, pain management)
Board Certified Pain Medicine ABPM
Board Certified Physical Medicine and Rehabilitation PM&R
Three Rivers Spine & Pain Medicine
Dr. Stephanie Le’s educational, training, and occupational background is beyond impressive. But besides her obvious brilliance, she has a great bedside manner and a wonderful sense of humor. I am so fortunate to be under the care of Dr. Le, although she worries about me too much. I can see it in her face at every appointment. I still remember one of her first comments to me when she reviewed my films, “Doug, you have the back of an 80 year old. No, it is worse than that. I’ve never seen so much hardware in anybody.”. Dr. Le said it with caring and concern in her eyes, and once again, I asked her not to worry. Dr. Le is wonderful and I am fortunate to be under her care. Wait, a minute! I can’t leave out Dr. Le’s medical office team. Their caring, kindness, and sense of humor have kept me feeling alive during all the trials and treatments. I can’t tell you how important they have been in my life.
“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”
To be honest, I wonder why I have been blessed to have so many brilliant, honorable, and genuinely nice people in medical professions guide me through this journey. From the Office Assistants to the Radiology Technicians to the Nurses (office, OR, ER, ICU, Intermediate Care) to the Physician Assistants. ALL have been wonderful, all have been caring, all deserve medals, and all have given me the best care that anyone could ever dream of. I thank all of you, from the bottom of my heart.
And oh man, have I been grumpy on many occasions!!!! You put up with me and have treated me with dignity and respect that I didn’t necessarily earn. You may not get the recognition you undeniably deserve, but you all have earned my admiration, respect, and eternal thanks for all of your kindness.
“Kindness is the greatest wisdom.” - Author Unknown
Below are some of the resources used in researching Scheuermann’s Disease for this website:
The Scheuermann’s Disease Fund, nor any of it’s volunteers or members, unless designated as such, do not have a licensed medical background or knowledge and none of the information contained in the website or said or written by its members in the site or any other medium, be it verbal or written, should not be construed as medical advice or recommendations. Any person searching for medical advice should do so by seeking a licensed medical professional.