The Case for Becoming Your Own Health Advocate
“Given the extent of information available, I was able to become appreciably informed about my condition and options.”
The beginning and end of my story is no different from many of those I’ve read in “Spine Tales.” Degenerative disc disease of my lumbar spine had progressed to the point where surgical intervention was necessary, and I now live a full life completely free of back pain. What I want to convey in this story is the importance of educating yourself about your condition and possible treatments, the importance of appreciating the advances in surgical technology and expertise that are available, and the importance of being grateful for the possibility of living your life fully again.
Lower back pain flared up occasionally throughout all of my adult life, typically following some type of activity that strained my lower back. My first nasty back pain came at age 19 after simply chopping wood in my parents’ backyard. Episodes like this continued intermittently for the next 30 years, usually every six months. For treatment, I would rest, take ibuprofen and acetaminophen, and the pain would go away in a couple of weeks. Looking back, I vividly remember my dad dealing with back pain, and I remember stories of my grandfather’s back pain being so bad that he was occasionally hospitalized.
In the summer of 2011, my spine health began to decline with a progression of new and more severe symptoms. With agonizing and constant pain in my hip, I made a visit to an orthopedic surgeon who ordered an MRI of my hip, which showed nothing amiss. A subsequent MRI of the lumbar spine showed a herniated L4-L5 disc, and a prevalent bulge of the L5-S1 disc. Physical therapy was prescribed, which I diligently completed. By September of 2011, I was relatively pain free.
Fortunately, we live at a time when diagnostic imaging studies are conducted at specialty facilities, and patients are the custodians of their own study media. We take MRIs with us to our office visits, but we can also load the imagery onto our own computers and view the same images our surgeons examine while they diagnose our problem. As I was recovering from my disc herniation, I poured over my MRIs and did an initial bit of internet research in an attempt to learn what was wrong with my spine and why I kept having recurring back pain incidents. It was easy to find very informative videos, spine condition descriptions, and treatments at a number of highly reputable web sources. Given the extent of information available, I was able to become appreciably informed about my condition and options.
In February of 2012, I was catching curve balls from my daughter (a committed NCAA Division I softball pitcher) when all of the pain came back immediately, with additional excruciating pain located just above my sacroiliac joint. I was miserable and went to see the orthopedic surgeon again. After another MRI of my lumbar spine, it appeared that the L4-L5 disc had emitted more material, and my orthopedic surgeon recommended a microdiscectomy of the L4-L5 disc. I underwent the procedure, and immediately felt complete relief. Unfortunately, this feeling only lasted for three months.
Pain returned for no apparent reason in May 2012, and worsened daily. At the time, I was thinking that I would need an additional microdiscectomy, and I made another visit to the orthopedic surgeon’s office. From August 2012 through February 2013, I was given several sets of steroid injections, four facet joint rhizotomies, a lumbar CT scan (from which I was able to generate a 3D model of my spine), a nuclear bone scan, an EMG, an MRI of my thoracic spine, and an additional MRI of my lumbar spine. Also from September through December, the pain reached a level that was nearly impossible to bear. I was using two canes because I couldn’t walk more than 20 feet on my own, I was taking maximum recommended doses of several opiates, I couldn’t sleep, nerve pain constantly shot down my legs, and I had extensive trouble just staying upright. If I were a horse, they would have shot me.
During this time, I again focused my attention toward my imaging studies and internet research. In addition to reviewing my MRIs and CT scans, studying the radiologist reports, and searching for MRI images of lumbar spine problems, I did the hard homework. I conducted extensive internet research to gain a basic understanding of spinal health vocabulary, nerve anatomy, surgical interventions, surgical indications (and contraindications), and non-invasive treatment options. Through my diligence and desperation, I had learned more about the spine, spine disorder diagnosis, and surgical options than I ever thought possible. More importantly, though, I became a well-informed advocate for my own health.
By February of 2013, it was clear to me that I needed fusion surgery… but it wasn’t clear to the orthopedic surgeon I had been seeing. I began to research the various surgical options for lumbar fusion, and came to the conclusion I needed an Anterior Lumbar Interbody Fusion (ALIF). Now, I’m just a guy with an internet connection, and the capability to investigate and understand, but I was convinced that I had neural foraminal stenosis brought on by the collapse of my L4-L5 disc. That was my “official” self-diagnosis. While I would never be foolish enough to believe my self-diagnosis was medically acceptable, I did learn that my symptoms, pain locations, and imaging studies matched up perfectly with indications for ALIF surgery. Again, this was my thoroughly humble and non-professional opinion.
I spoke with the orthopedic surgeon’s assistant about the ALIF procedure, and I remember her telling me, “We only use an anterior approach for the most severe of cases.” I did not address it with her, but thought to myself that my case was rather severe. When I later spoke with the orthopedic surgeon (and showed him the 3D renderings of my spine that I had created from my CT scans – which he thought were pretty slick), I asked him how a posterior approach could be used to restore my disc space. He told me that the fusion surgery he had in mind wouldn’t restore disc space—the goal of the procedure would be to stabilize the spine. Armed with the knowledge I had gained, I couldn’t understand how the nerve pain would subside if the foramen wasn’t expanded. Being thoroughly respectful, I didn’t say what I was thinking, which was simply, “I don’t get it.” The reason “I didn’t get it” was because the surgical treatment he recommended didn’t align well with what I had learned, not because I didn’t understand what I was being told. At this point I decided to look for another surgeon.
I made appointments with two surgeons. One was a rising star out of Johns Hopkins Hospital who came highly recommended by a friend in the medical profession. The other was a doctor from the Virginia Spine Institute, whom I had seen seven years earlier. I saw the Johns Hopkins surgeon first, and after his examination and review of my MRIs said to me, “You need an Anterior Lumbar Interbody Fusion”, to which I smiled and thought to myself, “You’re right.” I truly had done my homework. While the Hopkins surgeon was indeed brilliant and personable, there was something extra special about the way they approached my problem, poured over all of my data, and treated me as if I were an old friend. After reviewing everything, he recommended an ALIF, as well. At the visit, I decided that my ALIF would be performed by the team at Virginia Spine Institute. Of course, all this time I was in crippling pain. Family and friends would ask me if I was nervous about what I was to endure with the surgeries. Plain and simple, I would answer, “No, I feel fortunate.”
I would continue and say that I was fortunate because I wasn’t my grandfather. As I mentioned earlier, stories I had heard indicate that he suffered from severe degenerative disc disease, but his
situation was different than mine. At 49 years of age, he had four kids at home and had to drag himself to his job at the steel mill regardless of how debilitating his back pain was on any particular day. If he didn’t go to work because the pain was too much to bear, he would lose his wages, and someone was waiting to take his job. This wasn’t lost on me, and it helped me to focus only on the positive aspect of eventually being able to live fully again. So I felt fortunate – very fortunate. Also, since I had learned about the history of spinal fusion technology through my research, I was grateful that my surgeries were going to take place in 2013 and not in 1939.
The surgeries went well. Of course, there was what I considered to be minor incision-related pain and the general pain of the fusion healing process, but that pain was altogether trivial compared to the pain of living with paper-thin discs that caused my vertebrae to rub together and gnaw on my spinal nerves. My recovery progressed quite well – better than I could have ever expected. After six months I was skiing, I now work out six days a week, I golf regularly, and my back hasn’t felt this strong since age 18—never even the slightest stitch of pain. The best way to describe it all is this: it feels like there was never anything wrong with my back, and I never had surgery to fix it. Being able to make that statement gives me overwhelming joy, and I will forever be grateful for the care provided by the Virginia Spine Institute.
My advice: learn all you can about the spine, your symptoms, treatments, and maintain a positive outlook. Given the tremendous volumes of information at our fingertips on every topic under
the sun, there’s no reason why you can’t be informed enough to be your own advocate. Appreciate how fortunate you are that you can take the time to be cured, and realize that you will benefit from decades upon decades of advances in surgical training and medical technology.