Re- Re- Re- Re- Re- Re- …

Re- re- re- re-spect is what Aretha said. I’ve been trying to define what I’m going through, and all the words seem to start with “Re”:

Recovery – regain what I lost
Rehabilitation – re-clothe (“to restore to good health or useful life, as through therapy and education”)
Repair – I don’t think all the king’s horses and men can put this Humpty completely together again
Rejuvenation – make young again; Cheryl thinks I’ve aged about 5 years
Resurrection – coming back from the dead
Reincarnation – have another life, in a new body

I can’t decide on any one word to explain it; this sextet will have to collectively do the job.

I’m going to try a two parter here; part one is current status of my physical injuries; Part Deux is where my head is at – or more precisely, where it’s gone to through ongoing changes.

My major injury has a name: Central Cord Syndrome. This is a spinal cord injury, in my case traumatic, although it can be caused by tumor or other factors. It affects the fibers and cells in the center of the spinal cord. By definition, CCS is NOT a transected spinal cord. The actual nature of the injury is still poorly understood (people don’t go around operating on the cord like they do the brain), so the primary damage or change is unknown. Doctors being doctors, there is a lot of speculation.

When the cord is stretched (like mine was) or pushed (say from a swelling disk or tumor), the nerve fibers or cells in the center of the cord are affected. The universal symptoms and physical findings are in the upper extremities (arms, in English). Sensation and motor function (muscle activity) can both be affected. Many CCS patients also have other findings, such as loss of bowel, bladder, and sexual function. Some even initially lose the ability to walk properly.

Once I learned about CCS, and began to read up on it, I got both more and more freaked out, and more reassured. Freaked out, because some people with this problem are profoundly affected, and reassured, because I seem to have suffered a relatively mild trauma, as CCS goes.

For example, only about 2% of patients were able to walk unaided within the first 2-3 days; I got out of bed and walked by 72 hours after my injury. Only 5% could perform “activities of daily living” within a week; I kept disrupting the nursing staff by doing things for myself within 7 days of the accident. And only 20% of patients were back at work within 1.5-6 months; I went back to work after 3 months.

The “ASIA” motor scoring system is used for spinal cord injuries; mine was 91 (out of 100) when first checked 24 hours after injury. The average reported in a recent review paper was 58.7 with a standard deviation of 27.5 (range, 2-96), meaning I was in the upper 5% to begin with in terms of least severity. My score now is self-assessed at 95 or 96. The two factors which are most predictive of outcome (meaning, getting a good result after 2 years) are initial score and level of formal education. I win again.

But the absolute most reassuring statistic I found was this: after 2 years,  the median ASIA  score was 98 (meaning half of all people had 98, 99, or 100). At least 25% had a score of 100, or no deficit. Meaning, I can HOPE for continued improvement from the problems I have now, which are really minor in the grand scheme of things.

So, how does this spinal cord injury affect me today? Well, my triceps remain weaker than before the injury, on both sides. When I first went back to weight lifting, six weeks after the accident, I could barely budge 3 pounds, and couldn’t move 10# on the machine where I used to handle 30. Now, I’m at 8# and 15 on the machine. So improving, but not 100%.

My LEFT bicep is smaller and weaker than my right, but not by much. It is almost as strong; I can lift the same amount of weight with both arms, but it is easier on the right.

My wrist extension has markedly improved on the left, not at all on the right (although function is there). And two little muscles, the extensor carpi radialis and 4th interosseous in my right hand are pretty threadbare. The main result of this is: I can’t lift my little finger off the table when the palm is down, and it’s tough to hold my right hand in a good position to type.

That’s the muscle side. Sensory-wise, I have SLOW but continued improvement in the pins and needles I feel in my index fingers, on the palm side. It has pretty much stopped being an irritant, and I still believe one day I will wake up and it will be gone. But it won’t be tomorrow.

But, I’ve learned the time frame for this is kind of like the time frame for cancer – you’ve got to wait years before you can find out if you’re out of the woods or not. My neurosurgeon says don’t assume anything until at least two years have gone by.

Next up, broken bones. All healed: three in the neck, one in the back, one in the wrist. I’ve become about 1/2 inch shorter, and with some saggy flesh around my middle,  because my T12 vertebral body is now shorter than it used to be. Broken jaw: see below. Broken hyoid bone (little chicken bone in the throat): ditto.

On December 29th, I had my first (and hopefully last major) surgery to rebuild the bone where I lost my teeth. I was asleep for three hours while the oral surgeon delicately worked his way around various nerves to reflect the skin at the base of my mouth back, so he could put in a little pouch of Bone Morphogenic Protein (BMP), cover that with a titanium mesh cage held in place with tiny screws, and sew the skin back over with Gore-Tex sutures.

BMP is a special protein that comes from adult stem cells. It attracts substances naturally occurring in the body which act to help build bone, mimicking what happens when a broken bone re-knits itself. Just as with any surgery, there is a lot of swelling as the healing begins, but the BMP causes an extra dose of swelling, and by three days after the surgery, the lower part of my face was wider than my forehead, my lower lip looked like it was about to burst, and I was not feeling very good about the whole thing. Cheryl took pictures, but insists that I not share them, only tell people that I looked like Homer Simpson.

Almost worse than the swelling and discomfort from that was my diet. After working for about 5 weeks to get to a somewhat normal diet, albeit with slow swallowing, I now had to go back to pure liquids for the next two weeks. My preciously gained weight started to melt away – I lost 2 pounds that first week, and went into crisis mode. I started “eating” Jamba Juice P-nut butter Moo’d, with extra protein, flax, and fiber. Sort of a Reese’s Cup milkshake, 850 calories a pop. A week of that, and I was getting back to where I was the day of surgery. Now, eating for the past five days some things which are more filling, like oatmeal, PBJ, yogurt, chopped meat, chili, pumpkin pie, and my fav’, Papa Giki cookies, I’m finally over 144 # two days in a row. If I can hold it here for a week, I will go off the “count every calorie” mode I’ve been in since Oct 1, when I got on the scale and saw 131# and shrinking.

What makes the force feeding doubly complicated is my swallowing, which is still not operating at full steam. Remember, I had a crushed larynx, a large hematoma near my pharynx, and a severe abrasion, or tear, in the general area as well as that broken hyoid bone, which helps control part of the swallowing process. The sum total of all this is my esophagus doesn’t want to work as quickly as before, nor does it like as large a lump of food as it used to. So each bite requires more chewing (with fewer teeth), and more attention to getting it in just the right place for entry into the gut proper.

Things may improve a bit next week, when I get those stitches out in my mouth, and so can move my tongue without feeling a scratchy pain. Some time after that, the DDS will let me put a new bridge with 8 false teeth across the gap above the titanium cage. I hope I can get that in place before Feb 3, when we leave for two weeks skiing in Snowmass.

Speaking of which, I have bought a new ski helmet. One like racers used to use, which has a covering protecting the chin and lower jaw. I just don’t like the idea of anything possibly hitting that part  of my face even, say my fist if a miss a pole plant.

The reason I’m so focussed on all this, and willing to go through struggles to get better: there are two things I want to return to. I want to go back on call as an Obstetrician and deliver babies (meaning be able to stitch and do C-Sections). And I want to compete at a high level once again in Ironman Triathlons. Both require strength, endurance, mental acuity, and commitment. And both are so central to my self definition as of September 18th that I am not yet ready to imagine myself without them. Which will be the subject of Part Deux of my update.