Thursday, February 2, 2012

Body Is the Bus: Know Your Mechanics!

Problem: Adult post-club feet

Solutions: As proposed by the medical community:

1. Fusion
2. Tendon surgery (any kind)
3. Orthotics
4. (rarely, apparently) custom shoes with rocker soles
5. More fusions
6. Pain medications
7. More pain medications and fusions.
8. Wheelchair
9. Amputation
10. Did I say fusions?

With the exceptions of Number 3 and Number 4, all other choices are what can only be called Devil's Bargains. The thin number of studies that look at long-term outcomes all conclude that the more surgeries done, the worse the outcomes. The Ponsetti method, while a great leap forward for the pediatric treatment options for CF, have no impact on adults with post-club feet. Yet I see no evidence of the medical community showing any interest in getting creative with non-invasive treatment options for us adult clubbies. All I see is the oft-quoted definition of insanity - just keep doing what has proven ineffective again and again in hopes of getting a different outcome. The outcomes currently can be described in one word (for the most part) - pathetic.

I would try to launch a letter/email/phone-call campaign at the medical community by clubbies everywhere to agitate for a change to this near-criminal neglect, but I doubt much would happen, especially by the act of asking for a change to the status-quo. I think the only truly effective way to make this situation change is for all clubbies - those in chronic pain, and those who either have yet to reach that point, or even who've had moderate success - to start a serious dialog with their various medical practitioners and support or ancillary professionals (PT, massage therapists, etc.) That dialog should hold a tone of demand - for clear and well-researched answers, for more creative thinking of the doctor's parts, for second opinions, third opinions. We need to put the medical profession on steady notice that we are not just passive recipients of their oft-times ignorant approaches to our feet.

Every time a doctor suggests a solution that is invasive, ask him or her, what is the long-term outcome? Ask: how will this affect the joints above this joint? How will this affect my current shoes, orthotics, sports, exercise, etc? Ask  how many prior cases he/she has performed this surgery on people with APCF? The point is, don't be a passive recipient of the doctor's "professional" opinion - respect it, but question it at the same time.

After all, it is your body, and you are going to be riding in it for the duration. You have a right to know what is being done to your primary transportation system. You ask hard questions about your car, right?