Saturday, August 22, 2009

Beware the Rehab Doc (Part I: The Initial Consultation)

A few months ago I sought medical consultation with a rehab doctor. Specifically, one who had extensive knowledge and experience with spinal cord injuries, and all the medical issues that are incidental to that particular lifestyle. The primary motivating reason was because I have been dealing with a nagging medical issue for years that is uniquely intertwined with my SCI. None of my other regular medical personnel have been able to suggest something that has lead to what I feel is a suitable and permanent solution. So I decided to go after a bigger hired gun.

The other, lesser reason is that a friend who works closely with SCI rehab suggested that using an FES bike might be a good addition to my workout routine. An
FES bike is an electrical stimulation cycle that aids in exercising the arms, or much more typically, the legs of people who live with paralysis. It’s a piece of equipment that I’ve known about for years but always brushed it off because I was too wary of popping out a hip or the like once my legs started pumping away. But my recent ramped up diet and exercise routine hasn’t exactly been shedding pounds off the ol’ gut as I had hoped so I’ve come back around to the idea of utilizing it a little more.

But it’s not as simple as finding an FES bike and jumping on to let the magic start happening. It’s highly advisable, if not required, to get a bone mineral density scan beforehand to make sure there is enough structural strength in the hip and leg bones to put them through that repeated motion without suffering an injury. So I double-dipped the appointment to get her to prescribe a bone density scan as well.

As luck would have it, I got referred to a high quality rehab doctor at the
Courage Center, which is a really great Minnesota-based rehabilitation and resource center that “advances the lives of children and adults experiencing barriers to health and independence.” In short, they provide a wide range of services that cater to all kinds of disabilities, at all stages of rehab. I am very familiar with the Courage Center because not only did I live there temporarily for the first three months after I moved to Minneapolis to start law school in August of 2003, but I also workout in the Courage Fitness Center every Friday afternoon.

Regardless, after just two visits with said rehab doc it’s already gotten to the point where any further scheduled visits will become dubious endeavors. But it didn’t start that way. As soon as I met her the first time I took an immediate liking to her because she was a cool lady and we vibed well. Since it was a first time visit with a new patient she had to do the quick once over. In this case, that meant initially assessing my SCI level of injury, which typically consists of wanting me to keep my arm cocked while she pulled on it to test my biceps strength; doing my best to resist her as she pushes my arm towards me to test triceps strength; asked if I could squeeze her hand and if I can move any fingers to test my hand dexterity; asking where my level of sensitivity ends, etc. No big deal usually. They do their thing, realize I'm still pretty strong, tell me I'm a c-7 (again, c-7 being the seventh cervical vertebra) quadriplegic, nothing I didn’t know already. Ho hum.

Not so much this time. Instead, her conclusion was that I was in fact a c-6 quad, not a c-7. Total mind blower. Completely contrary to what I’ve been told and known about myself for over thirteen years. Apparently the determining factor was the level of sensitivity that I have in my fingers: I have full sensitivity in my thumbs, full sensitivity in my pointer fingers, half sensitivity in my middle fingers, just a trace of sensitivity on the fingertip and bottom side of my ring fingers, and no feeling in my pinkies whatsoever. It was the fact that I don’t have full sensitivity in my middle fingers, in her experience, is what makes me a c-6 quad instead of a c-7. So after thirteen years of thinking I was a c-7 quad it took less than five minutes to reveal that I actually wasn’t.

C-6, c-7, close enough, no big deal people might say. Not so in my opinion. First of all, in the SCI world there can be stark differences in physicality and functional abilities between c-5, c-6, and c-7. Second, what that revealed to me was that I was actually “more disabled” than I thought I was. I mean technically not because that probably means I’ve always been a c-6 quad. But mentally that’s how I felt about it. It was like the disability side of my life had just taken a bit of a step backwards. Ergo it was a rough, personal revelation.

The other thing is that over the years I had taken a bit of an ownership in being a strong, active, and independent c-7 level quadriplegic. So in a weird way I always felt proud to be a c-7 quad, as compared to other levels of SCI injury. It kind of said “I can do more for myself” and things of that nature. And in my experience as someone with a disability I’ve found that there hasn’t been much that is directly related to it that I’ve found pride in. I mean I’m not typically going to be proud to be disabled, especially as compared to formerly having been able-bodied. That would be absurd. But don’t let that be confused with the amount of pride I have in my accomplishments as someone with a disability since my diving accident. Because I do. Strong pride.

But trying to come up with a list of other things to be proud of in the strict disability sense is a little harder to do. I know I had a large amount of pride in the fact that I had two hugely attractive girlfriends in the three year period after my accident. To help paint the picture: a pretty, petite blond I dated just before and after my accident and then two years later a stunning, redheaded, green-eyed, athletic, buxom bombshell of a girl I had been friends with for years—I'm talking dream girl material. The pride factor in that regard was that I had the privilege of dating two gorgeous girls “despite” my having a significant disability, a notion which I now admit was a bit of a self-limiting line of thinking. But that’s how I felt at the time, and how I might even feel that way again as well because of the stigma that people with disabilities have to “settle” solely for less attractive romantic partners who are "ok" or "comfortable" with their disability lifestyles. Or worse, the stigma that nobody would want to date a person with a disability because it's too different or weird. Proud that I had a cool set of wheels—both wheelchair and van? That’s a big stretch. But given the circumstances of my medical diagnosis I definitely felt pride in holding myself out as a c-7 quadriplegic within the quad SCI world.

And to be clear, that is not to indemnify any other c-5 or c-6 quads out there either. I either know or am good friends with plenty of people at SCI levels of injury below c-7. I'm not insinuating that at c-7 I was better than any of them. That notion is ridiculous, because relatively speaking we’re all in the same boat. Moreover, I think any quad at any level of injury would give a lot to move up even one level to claim that extra functionality. That said, all I'm saying is that I considered it a disappointing shock to the system to discover that I was actually a higher level of injury, and thus a higher degree more disabled, than I had grown to embrace over the previous thirteen years. Of course, I also readily admit that I probably have made too big a deal of it all. But still. At the least I'm going to refer to myself as a c-6/c-7 quad, a la my blog profile, to hold onto my past c-7 glory.

Returning back to the doctor visit, my new official medical diagnosis was c-6 ASIA B incomplete SCI with c-7 motor sparing B. Other than the c-7 and incomplete parts none of that was any description of my SCI that I had ever heard of up until that point. Accordingly, she did write me a medical script for a bone mineral density exam, blood work, and a creatinine test—which I’ll delve into in a follow post before this one turns into a monster. Because in a lot of ways discussing the circumstances surrounding those tests, and what the results revealed, is the more interesting and share-worthy side of this tale.

But for now I offer this first part concluding warning: beware seeking a consultation with a rehab doc because you might just leave more medically disabled than when you arrived.

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