Beware the Rehab Doc Part III.A. (The Surprising Results)

Ok so here we finally go with the two-part conclusion to what I’ve decided to start calling my Beware the Rehab Doc "Trilogy." (It took longer to put together than I planned.) And a bit of a surprising conclusion it is, I might add. To quickly summarize, a few months ago I originally sought a consultation with a rehab doctor who specializes in spinal cord injuries to, in part, get a medical OK to be able to add the use of an FES bike to my workout routine (see Part I). Getting that OK meant having to get a bone mineral density (BMD) scan of my hips and lower spine – an adventure (or misadventure rather) that I explored in great detail in Part II – to make sure that my hip joints still had enough bone strength to execute the repeated bicycle motions necessary to reap the FES bike’s benefits.

The morning of my follow up appointment I found myself a little nervous about the BMD scan results, but on the whole I was quietly confident that nothing major would be revealed. I say quiet confidence because after thirteen years of living with a spinal cord injury, with all the intertwined health issues that come into play, I have learned that there is really no such thing as being cocky about your body’s overall health. Unexpected things arise all the time.

Still, unlike plenty of people with spinal cord injuries who don’t live carefully (e.g. “I can’t feel my legs anyway so what do I care if I sit too close to the campfire?”), and ultimately even trash their bodies (almost irreparably) as a result, I have thus far avoided all the typical major pitfalls that can arise with this particular disability’s lifestyle. For example, I have never recklessly thrown my body around. I have never had any bed sores or skin breakdown issues. I have never had issues with urinary tract infections, which is a common problem with SCI folks when catheters, etc. are frequently involved for personal “plumbing.” In fact, it wasn’t too many years ago that I had an ultrasound technician tell me that my kidneys were so beautiful that they were worthy of being pictured in a medical textbook. You can no doubt thank all of the water that I’ve frequently consumed over the years for that. (Don’t mind me, I'm just trying to further justify dedicating a handful of detailed paragraphs to my urine output in the previous post). What else? No major blood clots or circulatory issues. No flu or pneumonia things that have affected my respiratory system. All things considered I’ve pretty much always been in tip top healthy condition overall.

But my quiet confidence fizzled down stomach punching reservation the second the doctor stepped into the exam room. I’ve always had a pretty good intuition about reading people’s body language and the way she politely squeezed through the door, gave me a limp handshake, and a quick sympathetic grin before she sat down shot a few red flags into the air. With little hesitation she said, “So I have your bone density scan here, do you want to hear the results?” Up until then I planned to be cute and say something like “Only if it’s good news.” But based on all that mentioned just above I just cut to the chase and said, “That’s what I'm here for.”

The highly unfortunate punch line is that the scan revealed that I have severe osteoporosis in both of my hips. The way that she broke it down for me is that on the BMD scale anything above 0 or 1 (I forget which) is considered normal bone mineral density. Anything from 1 or 0 down to minus 2.5 puts you in the osteopenia range, because your BMD is below peak BMD. Having osteopenia is not great but not necessarily overly bad either. Anything south of minus 2.5 puts you squarely in the osteoporosis camp. As of the day of my scan both of my hips were well below minus 4. Thus the “severe” in severe osteoporosis. What that means is that my body is at a high risk of hip fracture resulting from something jarring, like a drop.

So obviously my head was swimming with various thoughts when she read me my verdict. My first question was what did I do to bring this on? She said that simply sitting in a wheelchair for thirteen years did it. It’s a very common thing with people with spinal cord injuries. She explained that regularly putting and keeping weight on the hip joints through walking and standing keeps the hip bone material growing and built up. When that regular walking/standing slows significantly or stops then bone breakdown begins.

My next thought went to my EasyStand standing machine, which is a piece of rehab equipment that allows me to hydraulically pump myself up to a standing position. Specifically, how I didn’t use it as much as I wanted to, and how much I probably should have, over the twelve or so years that I’ve had it. After all, take special note of the Medical Benefits of Standing numbers 1, 2, 4, 10, and 12 in this link. I’ve used it about every other day for about an hour for the last five years at my apartment, but there was easily a six plus year stretch before I moved to Minneapolis for law school where I barely used it all. The primary problem was that it was hard to get into a regular pattern like I have now, doing it in the morning while I eat breakfast and watch SportsCenter. Had I used it much more often would my hips be as trashed? The quick answer was no, and that had I actually used it much more often than I did it would have only staved off the bone density loss to a small degree. The not walking and standing thing was the key factor with this particular ordeal.

The thing that really threw me for a loop, however, was when out of my own illustrative curiosity I asked her to ballpark how "old" my hips are as applied to a normal person’s life arc. She said it's hard to say for sure but if she had to throw a dart she would say that I have the hips of a post-menopausal woman in her 80's. That bears repeating: as of the day of that BMD scan I have the hips of an eighty year-old. Post-menopausal. Woman. But it’s like, seriously?! At a healthy thirty years-old?! Absolutely flabbergasting. And it snapped the whole scenario into perspective for me.

Now like I said, I didn’t go into this thing naively, because I’ve been battle tested regarding unexpected medical prognoses. First of all, common sense dictated that there would be some bone density loss after not being able to walk for a number of years. Second, in this regard I had a bit of an early warning sign, a shot across the bow if you will, when I broke both of my feet one month apart from each other in the fall of my third year of law school (more on that another day possibly). After analyzing my X-ray the doctor mailed me a note that said “Diffuse demineralization is present” and then a line was drawn to a handwritten side note that said “bone loss probably related to being nonweight bearing.” Although that was a little hard to read at the time it made sense to me.

So before going in for the BMD scan results I had accepted that there would some form of bone density loss. But even with that being said, to say that I was flat out shocked to find out that I had osteoporosis, let alone severe osteoporosis, would be a huge understatement. The thought never even came close to crossing my mind. Even if just that morning I was joking a little bit with my PCA that based on other strange health news I’ve gotten over the years on account of my SCI that “I wouldn’t be surprised” if I found out that my hips were trashed after all these years. But I didn’t truly believe that, not even for a second.

And have any scintilla of a concern that my lower body bones were weakening? Come on. I mean I’m from Wisconsin, the Dairy State, and I worship at the altar of Kemp’s milk at least three times a day. Moreover, one of my theories as to why my diet hasn’t worked as well as I had hoped over the last year is because I just can’t seem to refrain from putting cheese on most things I eat: pizza, burgers, sandwiches, baked potatoes, salads, pasta, cheese and crackers at football tailgates, with vegetables to make them more bearable, etc. That said, with all things spinal cord injury disability related under consideration, the last thing I figured I ever had to worry about was the weakening of my bones or that I needed to take calcium supplements. But I guess milk doesn’t do a body good in all instances.

The bittersweet thing is that I'm still young enough that with the two medications the doctor prescribed (osteoporosis pills, mineral/vitamin/calcium combo supplement) she said that we can not only stop the deterioration of bone density but even start building it back up. At least that’s the goal. She said she's seen "80 year-old hips" in eighteen year-olds who had spinal cord injuries early in their youth and they were able to battle back and regain a lot of that bone density. Of course the only way to truly gauge the progress that my body is making in that regard is by doing BMD scans every six months for an indefinite period of time, possibly for the rest of my life. Judging from my frustratingly detailed account in Part II of this trilogy of everything involved with that exam you can imagine how happy I am about that. Especially now knowing that from this point forward any equipment failure that drops me would likely result in a hip fracture. Good times.

I’ll pick it up next time with my follow up thoughts and concluding remarks, before this post gets way too long.

But as long as I’m being quite candid already, I’d be remised at this point if I didn’t highly emphasize to any people with spinal cord injuries who might be reading this that you should get one of these bone mineral density scans done. Even if there are no signs that currently point towards you having lower spine or hip bone weakening issues, or no doctor has ever suggested it to you, I think it’s well worth inquiring about nonetheless. If you have paralysis that affects your lower limbs and you have mostly been sitting in a wheelchair for a number of years than it’s more likely than not that your hip bones have slowly been weakening in a similar fashion to mine. As I mentioned, with SCI it’s just the nature of the beast in a lot of cases, and I’m writing about in such detail to be overly poignant about that. You’re much better off getting ahead of osteoporosis issues and/or battling back before it’s too late or it could potentially have dire physical consequences down the road, which I’ll get into from my perspective next time.