Advocacy, My story

How to be your own patient advocate

dating-2Orthopedists, I’ve had a few. Three, to be precise. I feel like I’m playing The Dating Game. Hopefully, (bachelor-)doctor number three will be a keeper and not a polyester-leisure-suit wearing dud. If you’re just tuning in, allow me to give you a recap:

Doctor Number One works in a university medical center clinic. He sent me for a nerve conduction study administered by a resident who botched it, zapping me repeatedly on each contact point in order to get an accurate reading. The report indicated an “abnormal but incomplete study” because “patient complained and test was stopped” rather than “resident didn’t know how to administer the test and patient was tired of electric shocks.” Inconclusive. If we inject your wrist with steroids and you feel better, my doctor later concluded, you have carpal tunnel. Instead, I mostly felt weepy. The pain traveled from my thumb to my wrist to my forearm to my neck and back, only intermittently responding to treatment. Unhappy with my results and unwilling to wait two months to schedule a follow-up appointment, I went elsewhere.

Doctor Number Two is in private practice (pros: much nicer office; no wait time). When my symptoms didn’t respond quickly enough to another round of physical therapy, he suggested that I get an epidural in my spine. Only when I expressed concern about the possible hormonal side effects did he share his own experience. Laughing, he explained that his shot had made him so irritable that he fired one of his employees and so wired that he planted a giant raspberry patch in his backyard at 3am. But his back didn’t hurt, so it was worth it. Here’s the thing: I didn’t want to just alleviate my pain, which was now only in my thumb and forefinger. I wanted to fix the cause of it. I also had no interest in becoming a nocturnal raspberry farmer.

When it comes to chronic pain (in my case, for a diagnosis-defying repetitive stress injury), it’s easy to feel like you’re constantly complaining. That’s because it constantly hurts. My hands and arms were useless for writing, working, and sewing, my three main activities. Through this process, I have learned a little bit about self-advocacy.

Like the ladies on The Dating Game, I was optimistic about my third option, a doctor at yet another teaching hospital. Tired of answering the same questions and of not getting any relief, I decided to take charge of the situation. Here’s what I learned:

  1. Create a BRIEF timeline of symptoms, doctor’s visits, treatments, and results. There is no way I could have remembered all of these details, so I wrote them down. Doctors are scientists; they like numbers: how intense was the pain on a scale of 1 to 10? How many days did it last? What helped it improve? Just the bullet points. You can fill in the  rest later.
  2. Get copies of your medical records, including test results, and bring an extra copy to your visit. I never trust a doctor’s office to fax a copy of my records to another doctor. Do you see how busy that reception desk always is?
  3. Let them know what treatment has worked and what hasn’t. This includes writing down the names, doses, and side effects of your medicines or other interventions. I know that in order for me to get another steroid injection, I would have to exhaust all other options. I’m not there yet.
  4. Speak up. If your provider seems to be ignoring a particular symptom because it doesn’t fit a particular diagnostic profile, say something. For me, the weird muscular pain in my thumbs was not the result of nerve damage or tendinitis, but it was still very real.

So how did it go with Doctor Number Three? I began by asking if I could give my summary before he started asking questions. Like an attorney submitting evidence to the court, I handed over copies of my MRI, nerve conduction tests, and X-rays, with a flourish. He listened intently.

After about five minutes (which is all I needed), we went through a series of Simon Says commands. Does it hurt when you do this? Does it hurt when you do this? It never does. A few more questions and physical challenges, and now he, too was bewildered. Why do my thumb and forefinger hurt when I have no sign of nerve damage, carpal tunnel, or tendonitis? I started to doubt myself and question my reliability as a narrator of my symptoms.

To his credit, this guy did not seem frustrated with me for not fitting into one of his neat diagnostic categories; he was clearly up for the challenge. I finally said, in exasperation, look, it feels like it’s muscular pain in my thumb and forefinger. When I press here, I say, indicating the meaty part of the base of my thumb, it hurts. Same thing on the outside of my wrist – not sharp pain, not tingling pain, but dull muscular aching. I can’t use my hands for more than five minutes, and I can’t live this way.

I know I am (a bit of) an annoying patient: I refuse to settle for managing pain without understanding its cause. He understood that I certainly didn’t want an injection or painkillers, and offered a compromise: a glorious topical cream and a bunch of occupational therapy for my thumb joint. The only diagnosis we have settled on is that it is a repetitive stress injury. But, unlike the other two doctors who were too over scheduled, too frazzled, or too eager to medicate me, bachelor/doctor number three heard me out, so he just might be a keeper.

Our second date is next week. Wish me luck.