What do we really know?

As health care providers, we generally only acknowledge begrudgingly (and often only when forced into a corner) that, well, no, we don't actually know much about the human body. Sure, we certainly do know a lot. You need look no further than your local clinic, let alone a top tier hospital, to see that. We can squabble about the animosity between eastern and western medicine, but my point remains the same- we know a heck of a lot (and suspect even more) and yet in the scheme of the whole, intricate human body, we know little. But you work with what you have, right? And you make judicious decisions.

Having embarked on a medical journey at fourteen years old in an area notoriously murky, I'm reaping the results of the decisions now. Having had pain of relatively rapid onset but with no focal areas of interest, I joined the swelling ranks of young women with "patellofemoral syndrome." Call it what you will (and boy do they have a range of terms for the same problem!), it's painful and often debilitating.

At the time, I was given treatment that was considered standard. Nevermind that it wasn't an ideal treatment. It gave me a reduction in pain and for that, I took it. I think I'd still take it then knowing what I know now, though maybe with a few minor changes. Fast forward twenty-six years and here I am with not only a rapidly failing knee, but also now the leg. And I'm not alone. See, the standard of treatment, indeed pretty much the only treatment for the term "patellofemoral syndrome" (and all of it's equivalent meanings) was a bit of a blind shot. Considering that the diagnosis itself was, to reference a top specialist, "an admission of ignorance," it's no surprise really.

The handful of treatments we had in our arsenal didn't account for the now-known fifty-six variables in the blanket term of patellofemoral syndrome. It's not that we were ignoring them, it's that we just didn't know they existed. Even now, we can't objectively and reproducibly measure them. We just know that they often coexist with groups of friends (some larger than others) to create the problem. And so now we see folks like me with resultant hip, ankle, and back problems, besides the obvious knee problems, often presenting in a different manner than before.

I know, it's bittersweet news for many of us- validating yet discouraging. It's one thing to not know what you don't know. It's another to know you don't know something yet be at a loss to incorporate it into a working body of knowledge. We find ourselves in positions not too unlike the ones we were in fifteen, twenty, thirty years ago: where do we go from here? There will always be ideas and surgeries of the moment, but it's another gamble because surgery changes the body in ways we don't fully understand (for better and sometimes also for worse). Sometimes it takes weeks to see this and sometimes this takes years. I fit in nicely with a substantial minority of people in the latter group.

Nobody wants to be a guinea pig or take the "best available" treatment when we know there's still a long way to go for the ideal treatment. But for the moment what we have is the ideal treatment. How long do you hold out for a better treatment? Where is the quality versus quantity tipping point? In your quiet, reflective moments, what are you willing to risk?

One of the things that intrigues me about surgical consent is the presentation of risks. It's an art, I suppose, to get patients to that point where they understand that while the surgery is a viable option, the risks are real and potentially devastating. But hear this, nobody makes it through life alive and in one piece. Whether you decide on inaction or medical/surgical action, only the patient can determine whether it's worth it. That's not a decision to be taken lightly, whether it's ear tubes, an open heart surgery, or joint reconstruction. It may be an easy decision, and that's ok, but don't forget the real risks, large or small as they may be. I'm standing on my soapbox not as a nurse, but as a patient having willingly accepted the risks and reevaluating yet again undertaking another risk.

So yeah, I'm not regretting what I did, seven surgeries later, but I am still disappointed that this ordeal isn't over. It may never be over, and that's a peculiar kind of grief I have mostly come to terms with. Realistic expectations are having to be reestablished.

For those of you personally interested, the pain is wearing on me, but I can't express the relief I feel knowing that new advances have been made and that my situation is probably salvageable. I'm encouraged to hear that more reliable testing methods are coming around that will help clarify my problem. I'll be doing those the first part of March, and hopefully that will elucidate a viable treatment option. Whether it's newer treatments involving chopping up my bones eight ways from Sunday then piecing them back together or something much less extreme, I'm ready to hear it.