2nd Opinions, Doctor Shopping, and Big Al’s Jokes

As some of you know, I have been struggling with what seems like an increase in my neck pain for the past year or so. I’ve tried everything from stretching, lots of ice packs, medication, to multiple radiofrequency ablations. At best, these treatments have bought me a month or so of relief before the pain comes back. There are times when my high dose (DEA and CDC determination, not mine) of opioids has been worthless. Sadly, days like this are becoming more common. X-rays and my most recent MRI show continued degeneration, but my neurosurgeon does not see any surgical options that could help with the pain and associated headaches. For the moment, my diagnosis is that my new normal sucks due to the extensive and severe damage from falling off a cliff while rock climbing, multiple car accidents, degenerative disk disease, and several other medical conditions. Chronic pain is going to be my new best friend whether I want it or not.

Since my most recent MRI showed “new” damage, I wanted to talk to my rheumatologist again about the possibility of Ankylosing Spondylitis (AS) or some other autoimmune condition that might explain and justify my current pain levels. I say “again” because I’ve discussed the possibility of AS before with him. Many physical therapists over the years have thought that I had AS because of how stiff and the lack of range of motion in my spine. Long story short, my rheumatologist is positive that I do not have this disease. Based on my scans, he believes my pain and other symptoms can be explained by the severe degeneration and damage I’ve done over the years to myself. To put it another way, I have all the pain and similar symptoms as an AS patient; I just don’t get the glory of a diagnosis.

Now, since my rheumatologist is a great doctor and human, he wanted to discuss the possibility of me getting a second surgical opinion. He doesn’t necessarily think my current neurosurgeon is wrong or a bad doctor (she did my last neck surgery, which I was happy with the outcome). His thinking was that contrary to popular opinion, doctors don’t know all the medicine, so a different surgeon might see a surgical option that my current surgeon doesn’t see. That it’s hard to believe that I can live in so much pain and not have a surgical option available. I can see and understand his logic, but I had a concern: when does a second opinion become doctor shopping? In a for-profit health care system, it’s not that hard to find a surgeon who would naturally say, “Of course, I think you are a candidate for surgery. For only $50K, I can make you as good as new.”

For those of you who are not familiar, doctor shopping is defined by the National Institutes of Health (NIH) as seeing multiple treatment providers either during a single illness episode (like my neck pain) or to procure prescription medications illicitly. In my case, it would be seeing multiple surgeons until I found one who would operate on my neck.

As long-time readers and followers know, I’m no stranger to having surgery. I’ve had more than 10 surgeries already, and I’ll need more: it’s just a matter of time at this point. If you are curious, my right hip is replaced, my left hip is resurfaced, my left shoulder has anchors and screws, both knees have been scoped, and I have eight screws and two plates in my neck, just to name a few of my surgeries. Now, partly due to my surgical experience and partly due to who I am as a person, I’ve never considered surgery to be scary or something to be feared. Surgery is an opportunity that should be celebrated and encouraged; it is a chance to raise one’s quality of life. In my head, the risk is not having surgery, not the surgery itself. I don’t know; maybe I’m strange.

Quick side note about how I pick surgeons: there are many reasons to like and respect a surgeon. For me, part of being a chronic patient is developing a personal scorecard, which is largely based on my experience. This scorecard helps me determine if a surgeon will affect my quality of life in a positive manner or not. For me, a surgeon who examines my x-rays, MRIs, or any other scan instead of relying solely on a radiologist’s report is a great surgeon who cares about my quality of life. My neurosurgeon does this, which is why I trust her medical opinion. By giving me her assessment of my scans, I know I’m getting her best opinion about the state of my neck and not just supporting a radiologist’s thoughts who I’ve never met or spoken to.

To add to my strangeness, I grew up with a dad who was not a fan of doctor shopping. He felt obtaining a second opinion constituted doctor shopping because our healthcare system is based around profit and not our care. Dad was a huge believer in what is now called self-advocacy. If you felt like surgery should be an option, it was up to you to become knowledgeable enough to convince your doctor. After all, it is your life and not theirs. Now, even though patients are experts too, he understood that we could be wrong, so we needed to respect the doctor’s opinion and professional experience. That there is a difference between medical necessity and our feelings.

Welcome to the struggle the voices in my head are currently having. On the one hand, I’m mentally and physically exhausted because of the amount of neck pain I’ve been dealing with this past year or so. Don’t worry; I’m not on the path to the dark place, just exhausted. On the other hand, I understand and can accept that I’ve done severe damage to my neck over the years. Falling off a cliff and surviving more than a handful of car accidents has taken its toll on my body, and this doesn’t include the degenerative disk disease, facet joint syndrome, or possibly the rheumatoid arthritis, just to name some of my medical issues. From an intellectual perspective, all of this makes sense to me.

The part that concerns me is that I seem to be worse years after my fall and car accidents and diagnoses. Also, the speed of my decline is also on my mind. If time heals, it would seem like I should currently be living in a more stable state, especially considering the high dose of pain meds that I currently take. The voices in my head don’t understand why there seems to be a disconnect between my medical conditions and the current state of my neck. Could I simply be redefining the word “severe”? That would explain much of this.

So, the question is: do I break with family tradition and get a second surgical opinion? Do I accept the opinion of my current neurosurgeon, whom I like and respect, and stay the course? Do I work harder at accepting that this is my new normal? Do I continue to write more blog posts like this in the hopes of stumbling into a better question whose answer could possibly raise my quality of life? Do I get off my computer and try to find somewhere in Idaho to hike that doesn’t have any snakes? (Here is the basis for my last question: I hate snakes!)

As of this moment, my answer is that I’m not going to seek a second opinion…I think. On August 15th, I am going to see a headache specialist in the hopes of getting a better understanding of why I seem to be experiencing new types of headaches. I’m also hoping my insurance will approve a nuclear scan of my neck, which will look for pockets of inflammation and possibly cysts on my spine. There is also hope that this type of scan will help my pain management doctor determine a more effective course of injections. Most importantly, though, I’m just too exhausted to go through the experience of obtaining a second opinion right now.

Here is the dirty little secret that doesn’t get discussed enough: the act of seeking a second opinion is easy, especially nowadays. With the internet and social media, finding a qualified and respected surgeon in my area is not hard, and neither is setting up an appointment. Okay, yes, filling out the stupid new patient paperwork can be annoying, but that cost is mainly time. It’s the experience of seeking a new doctor that is difficult. There is an emotional and mental cost to having to explain my pain to the new people. Time becomes a drain on you physically because the new people invariably want their own tests, their own treatment plan, their own analysis, even though all I want is to not scare the girls at the front desk at the YMCA because I need to ice my neck so the pain from my current headache doesn’t prevent me from being able to drive home after working out.

The cost of healthcare prevents access; we all know that. What we don’t seem to want to admit and accept is that the requirements of our healthcare system also prevent access. Obtaining a second opinion, any opinion, should be a time of opportunity, of excitement, because it is a chance at a higher quality of life. Maybe if we made it harder to obtain a fast-food cheeseburger than health care, I would not have to write posts about whether I should seek a second opinion because I’m so exhausted from living in severe pain.