Paralysis Cure Worth Waiting For

Every time I turn around I seem to read about some paralyzed person who's traveled to a far-flung country for a miracle treatment not available in the United States. "I can now wiggle a toe! I'm improving!" they exclaim.

Meanwhile, I stay put in my wheelchair, albeit restlessly, in Charleston. Having been paralyzed from the shoulders down since suffering a C3 contusion injury to my neck in 1996, you might ask what the heck I'm waiting for. Am I a masochist? Possibly. But have you ever read a follow-up story about long-term functional gains achieved by one of these treatments? If none come to mind, it's not because you have a bad memory.

A recent article in Neurorehabilitation and Neural Repair offers a sobering explanation. The study examined the results of seven surgeries performed by Hongyun Huang, a doctor in Beijing who treats spinal cord injury patients with cells taken from the olfactory bulb (found inside the nose) of aborted fetuses. Previous anecdotal reports from some of the 600 patients that Dr. Hongyun Huang says he's treated were positive, but had a twinge of irrational exuberance.

Now, the authors of one of only three papers attempting to quantify Huang's results (none of them by Huang) say that "no clinically significant ... improvements were found."

In other words, some $20,000 plus traveling costs later, quadriplegics who shelled out for a procedure they likely could not afford regained no functional use of their arms, wrists, hands and fingers, and no paraplegics regained use of their lower body. (A report published in the journal Spinal Cord noted one quadriplegic demonstrated some minor functional gains, but nothing that significantly improved his quality of life.)

Did I mention that five of the seven patients discussed in the NNR review got bacterial meningitis as a result of the surgery? "Advanced bacterial meningitis can lead to brain damage, coma and death. Survivors can suffer long-term complications, including hearing loss, mental retardation, paralysis and seizures," according to the Directors of Health Promotion and Education.

I have long been skeptical of offshore treatments promising magical results. Most reasonable people would be. But people facing a life confined to a wheelchair, or perhaps the end of their life, are, understandably, not always reasonable. I certainly have moments when I seriously contemplate signing up for Huang's surgery -- usually when I'm considering the toll my paralysis exacts on my parents, or the sheer frustration of being completely dependent on others. (Do you know how a paralyzed person goes to the bathroom? It's a degrading and humiliating experience. "Bend over and smile!" takes on an even worse meaning.)

The Spinal Cord anecdote I mentioned showed the patient had some motor recovery by two ASIA levels, which are used to grade the severity of spinal cord injuries. For me, two levels of regained motor function -- the maximum one could expect -- would move my current level of motor function from the ability to shrug my shoulders to the ability to give the Handiman salute (Remember Damon Wayans' handicapped superhero character on In Living Color?)

Here are some other reasons why I don't buy a ticket to China: Receiving the treatment could exclude me from future clinical trials. Clinicians running studies have strict criteria regarding who they can include, so they typically want the purest patient they can find, i.e., one that is "normal," so they can be sure any results they see are due specifically to their treatment. Having had fetal cells implanted in my spinal cord would not qualify as normal.