Wednesday, April 15, 2009

Stop the Medical Merry Go Round: I Wanna Get Off!

It's been an interesting couple of weeks. Shunted from an arthroscopy specialist to his colleague the knee replacement surgeon, I now know the following:

-My right knee, specifically the inside or medial area, is shot. Combined with osteoarthritis, this knee is effectively almost seventy since it is twenty years older than my almost-fifty-year-old self.

-The proposed partial replacement surgery should be done while my lateral side is still free of arthritis. However, there is no data from the medical literature suggesting that this surgery will be successful in patients like me. The surgeon says, based on the MRI and recent x-rays, that I have a window of time (from one to five years) before surgical intervention will be necessary.

-I am not a good candidate for a total knee replacement, so a partial is really the only option, and since there is no data on its use amongst ambulatory cerebral palsy patients, the likelihood of failure or needing future replacement surgeries over the rest of my life span is quite high. This is because I walk and move differently than those for whom the joints are designed and knee surgeons know that I and others like me are poor risks. They don't do surgery on patients like me often and rarely do they study us or publish any findings.

-When I queried this specialist about conserving the joint once replaced by using the chair I'm getting, his response was astounding. He said that his was more a Sports Medicine focus and that he believed all joints should be used up, regardless of the frequency of future surgeries, the cost to the patient or the emotional toll of eventually having so-called revision surgery (switching from a partial knee replacement to a new total knee). He followed this with, "If you end up with a total knee replacement and in a wheelchair full time at 70, so what?"

-He is on the faculty of the medical school in this community, and highly thought of. Given the uniqueness of my situation, I find his responses entirely too cavalier. He is exactly the type another renowned total knee specialist warned me away from months ago. I have six months before returning to him or finding an orthopod I can talk to. The odds are not great on either score, given my life-long experiences with orthopedic specialists. He did tell me that I understood my situation quite well (surprised that I've a brain perhaps?).

-Meanwhile, I see the Adaptive Seating Specialist yet again on Friday to finalise the chair. Once that is done, I will be taught how to use it to minimize injury and strain. I am continuing research on pain control. Someone inquired about acupuncture. That hasn't worked well in the past and isn't a covered expense here, so I am looking into other things.

-Someone suggested looking at the literature on cancer and pain control, just to see if I can find anything interesting or useful to me. If anyone has read anything in that area, kindly let me know.

-My insurer is keeping me on the phone trying to unravel claims that have been processed incorrectly by them, coded wrongly by harried docs or otherwise screwed up...A never-ending morass...

-I am continiung the anti-inflammatories and ice packs and so far, things are okay. Small mercies.

Thanks to everyone who wrote in, sent postcards and shared their time.

I am tending two cats now on antibiotic therapy following another outbreak of their feline upper respiratory, and hoping for rain.

As Passover concludes, I wish you all a belated Happy Easter, Joyous Passover and Wonderful Spring!