The Man With Two Belly Buttons

It’s been a month since I last wrote an update (hell, it’s been a month since I wrote anything), and I’ve had more than a few people wonder what’s wrong with my site, why it’s not showing anything new.

The big reasons, I think, are I expected to be back to “normal” by now, and also I’ve been putting my energy into physical improvement, not documentation or detached observation. But it turns out there’s only so much I can affect, and most improvements will be out of range of my will power.

So, another walk through my on-going resurrection, or, more precisely, re-incarnation.

First, there’s PTSD. Almost everyone asks, “have you got back on your bike?”, the sub-text being I might have some fear of it. Well, yes, I’ve ridden on the road twice since the accident, and a number of times indoors on the trainer. And, no, there’s no residual fear. But I do have strange reactions which might be symptoms of heightened anxiety. For example, if I suddenly hit my head on something while standing up, I go sort of ballistic, thinking I will crack all over again. And, every little or even imagined physical symptom which hits me gets magnified into a dramatic worsening of my condition and prognosis. You’ll get an example of this below.

Now, about those two belly buttons. I thought of putting a picture as the lead to this story, but Cheryl dissuaded me. For there curious, here’s what it looks like. The site where my gastrostomy tube entered my skin is all puckered. It took SIX weeks to heal, after the tube was pulled. For the longest time, there was a gap of about half an inch, filled with oozing, friable granulation tissue. Finally, I got exasperated, and saw a General Surgeon. He stabbed at it for five minutes with silver nitrate sticks, which did hurt a little, but the thing healed over in 36 hours. Magic! And one less thing to worry about, except for that odd pucker I’ll carry around.

Next, there’s the saga of my swallowing and my tracheostomy scar. My swallowing is still gruesomely ineffective. I have to take bites that are about half size, and I have to fully chew and swallow one before shoveling in another. It takes 20 minutes to eat a bowl of oatmeal with raisins and blueberries. Cheryl told me at the Air Force Academy, cadets are made to chew each bite 17 times before swallowing. I counted over sixty when I was eating a salmon burger. Having plastic on top of my lower molars also reduces my chewing effectiveness, so that doesn’t help either.

I noticed that, when I leaned my head forward instead of holding it upright, things went down easier. I also notice that, in this position, there seemed to be less tension from my trach scar into my upper trachea. I mentioned this to my speech therapist, suggesting that if the trach scar were “revised’ (cutting the scar tissue between the skin and the underlying trachea), I might swallow easier. I can be pretty convincing if I want to, so she bought the idea, and wrote it in her note. I also made a visit to the ENT doc to discuss the same idea.

HE thought it made sense too, and confirmed that my larynx moved up (to help force food backwards into my esophagus) my more when my head tilted forward, then when I was erect. He did this of course, by snaking the nasopharyngoscope thru a nostril (which was numb) back into my throat (which was not) and having me repeatedly swallow.

But he is retiring at the end of the year, and sent me to one of our other ENT docs up in Seattle, who has the most experience with complex neck and skin surgery. Dr. F. is a runner, biker, and reader, and we spent most of our visit talking about that stuff. But, for once, he was not cowed by my insistence that this was an issue that could be fixed. He helped me realise that the medically prudent thing would be to try other things first, such as (a) time to allow the swallowing muscles to get stronger, (b) awaiting the conclusion of my jawbone grafting and teeth implants to be fully effective to aid swallowing, and (c) letting the adhesion break up more on their own.

I’d been thinking like a patient (an impatient patient), not a doctor, and I wanted results NOW, hang the risk and chances for success.) Luckily, I can also think like a doctor, too, so I won’t be going in for another surgery on my trach scar anytime soon.

The ENT doc also says my vocal cords are somewhat shorter than they were, giving me a huskier, lower voice, with no ability to falsetto. There goes my career as a Roy Orbison impersonator.

Moving up, I saw my oral surgeon last week, and we’ve scheduled the bone grafting procedure (a 3.5 hour surgery) on December 29th. I won’t be able to eat solid food for 2-3 weeks afterwards, nor will I be wearing my artificial teeth during that time. And it will take 4-8 MONTHS before there’s enough bone there to starting putting screws in for the implants. And that’s assuming one bone grafting cycle is sufficient. Luckily, I’m NOT an oral surgeon, so I have complete faith and trust in him, with no second guessing. I’m going to do everything he says, in regards to my mouth, at least.

I’ve kept up the high calorie, high protein diet, and have raised my weight from about 130 to 143+ pounds since leaving the hospital. And my weight lifting has increased my muscle size and strength to near 100% in my lower body, with spottier success in my arms. Remember, my most significant injury was to my spinal cord, with swelling and bruising there throughout my neck. Specifically, I have “Central Cord Syndrome”, if you want to look it up.

A follow up MRI and visit with my neurosurgeon last week shows that the spinal cord changes seem to be resolving, but are not gone. It might be up to 2 years before we know what damage might be permanent.

The underlying issue is this: while my brain can still send out all the proper signals to make my muscles work; and my muscles still have all the muscle fiber and blood supply they had, there is some blockage between the two. Not complete; I’m not paralyzed anywhere by any means. But some muscles have significantly fewer nerve fibers stimulating them before. The main culprits are my triceps (left worse than right), my wrist extensors (the muscles you’d use to lift your hand up in an effeminate manner; the right is worse than the left), and to a lesser extent, my left biceps. My deltoids, pectorals, and latissimus are still getting stronger, so I assume they are minimally affected. And I still have strange sensations in my index fingers, and a few other places in my hands.

It’s possible this is temporary, but assuming it is not, I intend to make what muscle there is as strong as possible, and strengthen the auxiliary muscles (such as finger flexors and rotator cuff) to help take up the slack.

Nonetheless, my neruosurgeon says he is quite impressed by the progress I am making, and has given me the green light to go ahead and continue to swim, bike, run, ski and weight lift with increasing intensity. I will not be doing anything involving a lot of force on my spine, or risk of falling, like mountain biking or bump skiing. After all, I did have 7 broken bones, including 4 in the spine.

It’s hard, but I will follow this advice. I’ve got enough to do to improve my biking and running without risking further injury. Almost every doctor I see says either, “You know, you’re lucky to be alive”, or “You could quite easily have become paraplegic,” or both. And you know, I really don’t want to hear that. I’m not dead, and I am mobile, and I want to see just how far I can get with the body I’ve got, just like before. Not necessarily to be as fast or as strong, but to see what my limits are, to use my speed and grace and strength to enjoy skiing and cycling and racing. Not to sit on the couch, thinking about how lucky I am.