Limited patient choice within the Military Health System
In the military you are told what to do, however, when you fight for your choice as it applies to your own health, be prepared for a long fight. I was rather severely injured in an automobile accident driving to work one morning. What would follow were a grueling two years of therapy and a decision that I had to make with limited knowledge and experience to draw from. Like most young service members this was my first exposure to a medical system from the patient side. We all tried to remain positive even though we were immersed in a quagmire of pain and hurt, and like all things in the military we had each other to keep us going.
Near the end of second year of my recovery from a crushed pelvis, something began to go awry. There was the all too familiar pain that would consume my days, and the inability to walk slowly crept back up on me. Lucky for me I was going through my therapy at The Center for the Intrepid (CFI), the army's foremost advanced center for Amputee and Traumatic Injury Rehabilitation. Every medical professional there worked non–stop to see that each and every service member regained their independence. It was an honor in itself to go through rehabilitation with many of our nations brave men and women that suffered severe injuries, but never let anything stop them in achieving their new goals. I was working with an excellent physical therapist, a retired full–bird colonel that ran the medical specialty corps as his last assignment. We had a respectful and professional relationship, where he valued my opinions about my course of care. He noticed that my progress had severely regressed and sent me in for an x–ray. The prognosis was not good, it appeared as far as we could see that the head of my femur was dying, from a large irregular black pattern on what should be a smooth ball surface. This was not a good thing and sent my mind and all of my concerns into overdrive as to how I should address this problem, not to mention the searing pain that would literally stop me in my tracks while I was walking, as I paused for upwards of 10 minutes until my femur reset and I could begin walking again.
This was my new mission—I needed to find out what was wrong with my leg, what were my options, and when the military could do this surgery. Little did I know that this would be such a complicated and convoluted process trying to get a surgery that I obviously needed. I began searching [End Page 92] online for any and all information about Avascular Necrosis that I could find. It did not look promising. I would need a hip replacement of sorts, and this medical intervention was only complicated by my age of 26 at the time. I began searching the most traditional of procedures, a standard polyethylene total hip replacement, and then I also found out about an all metal total hip replacement. I scheduled an appointment with the Orthopedists at the Military hospital as soon as they would see me.
My girlfriend at the time was a physical therapist, and she worked under one of the premier hip surgeons in San Antonio. I am very grateful that she had him review my case at the same time I was looking at my available options at the military hospital. Using the San Antonio doctor's recommendation, I began to scour the internet for any information I could find about metal on metal hip replacement surgery. I started watching YouTube videos specifically from the Duke Medical Center. They compiled a wealth of information for the patient, and I found the explanations very helpful in guiding my thought process. One thing they stressed, based on longevity and durability for daily activities, was metal on metal hip replacements. I began reaching out to any other contacts I had in healthcare, a friend that was an orthopedic resident at Vanderbilt Academic Medical Center, and another army friend I grew up with that was an orthopedic tech at Walter Reed Medical Center. I began to diligently prepare outside resources as I got ready for my appointments with two different military orthopedic surgeons.
This is where the process became complicated. I met with the first surgeon—a young lieutenant colonel who had a well-received reputation. We met and he told me what he would do for me in terms of a polyethylene hip replacement acetabular cup with a ceramic femoral head. I asked him about the durability and longevity of that type of implant for someone my age and weight (I was around 190 at the time quickly falling out of fighting shape). He told me rather bluntly this is what I would get and he could schedule the surgery in the next few weeks. The second referral was rather suspicious. I met with another superstar surgeon on the ortho floor who had been given my case after the doctor that did my original surgery retired, so we had occasional interactions. He had done some great work in the area of limb salvage and was coming up with innovative techniques. When I met with him, the meeting was as hurried as usual, but he caught me off guard when he offered to perform a hip fusion. He explained the procedure and said I was a good candidate for it based on my age. I had read about this and was having trouble grasping the loss of all range of motion in my hip with this procedure. I had read that this was an outdated procedure that was rarely performed anymore due to advances in hip replacements. I told him I would get back to him if I wanted to go with this procedure, which I most certainly did not.
I spent the next several days researching and mulling over all of my options. I reached out to my friend at Walter Reed Medical Center to go over what I had found out so far. I was unsure of the longevity of a polyethylene total hip replacement, and had entirely rejected the idea of a hip fusion. My friend informed me that there was one doctor in the entire US Army Medical system that did metal on metal hip replacements, and he had worked with him and would track him down. I was very grateful that I had another potential option on the table. During this time my girlfriend was in contact with the doctor in San Antonio who she used to work for. It turned out that he still did surgeries on the side for the military at an Air Force clinic on the other side of town. I set out to get a second opinion from him during his military clinic hours. There was regulation within our Tricare insurance for active duty military that we were entitled to a second opinion in the course of our care.
The next week I met with my case manager, a very nice lady who spent decades as a nurse. We always had nice chats and she always encouraged me. But the news this time was not beneficial to my care: they had denied my second opinion at the other military clinic. I was not expecting to hear this news. I left a little baffled, as I only had two options available. Shortly thereafter I received a call from my friend, saying that the army doctor that did metal on metal hip replacements deployed two weeks ago. This further narrowed my options. [End Page 93] I continued to search online for alternatives as the pain mounted and my options dwindled.
I ran across some articles about a newer procedure developed in England called a hip resurfacing. The information said that it was used for younger patients that wanted to retain an active lifestyle. This was obviously exactly what I wanted. More digging online and I came across a website called surfacehippy.info that was a repository of almost every surgeon in the world that did this procedure and how many operations they have performed. I could not believe I stumbled across this; I consumed every article that they had posted and stayed up all night reading the forums where patients talked about their experiences. There was only one problem—there was no way the army offered this.
It just so happens they had me working a small time job doing some medical contracting work. When I brought up my dilemma to my boss, he told me that he had actually had a hip resurfacing done while on active duty. I could not believe this, and it gave me some hope that I may be able to get this procedure, recover and continue my military career. Then the news kept getting worse. I was told to report to our battalion surgeon's office. She oversaw all of the medical requests and surgeries for the soldiers in the wounded warrior battalion. She called me down there to inform me that I would not be having any procedure and would be promptly medically retired from the service. I was enraged to say the least. I could not believe she had the audacity to tell me the procedure I wanted was elective when she couldn't even grasp the amount of pain I was in. I even had a battalion-level policy letter that clearly stated if an injury brought you to the battalion then any further surgery you needed specifically for that injury would not be considered elective. I raised my voice at her even though she outranked me, and as I stood up to leave my hip gave out and I began to sweat profusely and almost passed out. It was both embarrassing and emasculating at the same time, and I couldn't figure out if it strengthened my argument or if I lost all credibility. I was obviously not satisfied with that outcome of her telling me there was no way I would have surgery to fix my hip so I decided to write a well-crafted email to the hospital commander, a one-star general who informed us he had an open door policy for anyone in the wounded warrior battalion to address concerns.
I received his reply a few days later. It was even more well-crafted. It stated with all the formality and legal speak that I would have plenty of options to have surgery outside of active duty, and they were going to move forward with my medical retirement. He told me I was more than welcome to have surgery at his hospital as a retiree, I could use the VA, or I could use my Tricare insurance on the outside. That was basically the end of the line for me in that regard.
However, my search for hip resurfacing doctors on surfacehippy.info turned up some very interesting prospects. I emailed my x-rays to three specific doctors that were the top in their field regarding hip resurfacing. One was in India, one was in Belgium, and one was in South Carolina. It just so happened that the San Antonio ortho doctor had done about 150 hip resurfacings at the time, so I scheduled a consult with him for good measure. Within a day I had received emails from all three hip resurfacing doctors. The doctor in India told me that my surgery was too complex and he did not think he would have been a good match for me. Granted he had done over 2,000 ceramic hip resurfacings by that time. I appreciated his honesty. The doctor in Belgium said he would happily take my case, and he thought there was a high chance of success. He too had performed about 2,000 of these procedures and the cost was going to be around $10,000 out of pocket. The third doctor in South Carolina also said he felt confident he could do the procedure. He had done about 3,000 at the time, but he also said he may have to custom design my acetabular socket based on my x-rays.
I really felt like I was getting somewhere. I had two potential doctors. I was still going to meet with the San Antonio Doctor and I was scheduled to meet with the Veterans Administration as well a few weeks after I left the army.
My appointment came with the San Antonio doctor. He was prior military. I certainly appreciated him fitting me in to be seen. During his assessment [End Page 94] I asked a few questions. How many procedures had they done for this specific replacement? How confident was he that during surgery he would not have to switch to a total hip replacement (something I wanted to avoid at this time due to the potential for more surgeries in the future)? He did not receive these questions as openly as I would have expected, and I was told something to the effect of, "You are not in a position to be asking questions like that. I am the doctor." This unfortunately told me all I needed to know.
So I was now out of the army, still in immense pain, and needed surgery. It was all up to me, and I scheduled my appointment with the VA hospital in San Antonio. I was seen by a sharp Cleveland Clinic trained doctor, who advised me that if I could get the procedure done somewhere else, especially the hip resurfacing procedure, that I should do that. I thanked him for his sincerity, and now had a clearly defined path. After one final discussion with my mother, I knew that she felt much more comfortable having me have surgery in South Carolina, which was close to my family home. I felt okay with that as my final option because both the doctor from Belgium and South Carolina were the best in the field, had extensive post-operative patient experience stories of great outcomes, and the cost was relatively comparable.
This journey of pain and searching brought me to what I think was my best medical outcome. It was incredibly difficult and it was a lot to learn and comprehend about myself. There was never a time when a doctor sat me down and said these are all of your options—I can refer you to someone that does each. Most people would have given up and been happy to get what they were told. It is by no means an easy process to take responsibility for the outcome and decision making process for your health; we often rely on physicians for that solely. We must take a vested interest in the procedures and medical interventions that shape our lives so that we can try and guarantee the best outcomes and live our lives fully. [End Page 95]