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!

Update

March 29, 2009

By E.

It has been a busy few days here and at about 4 AM, my household wakened to the sounds of a roiling storm, which by mid-day had passed, leaving leaves strewn on wet streets and slowly drying puddles.

The swelling in my knee has gone down enough for me to get out Friday in the chair and yesterday, briefly, without it. Because the chair is a manual, the PT warned me to beware of neck, shoulder and wrist wear, which is the last thing I need at this point. I will meet with the adaptive seating specialist this week and eventually obtain a chair that is fitted to my body and needs, theoretically reducing the likelihood of repetitive strain and injury. Another blogger who lives and works from a chair also suggested that I ask for a physical therapist to teach me how to use my body correctly in the chair. This will also reduce the possibility of further strain and injury, and I am grateful for her generosity in sharing this with me.

I continue to use frozen peas and other ice packs as well as anti-inflammatories several times daily. As I indicated in the comments section of the post dated March 19, the meeting with the arthroscopy surgeon did not go as expected. He feels that I would derive little lasting benefit from that procedure at this point due to the state of my knee, which is that of a seventy-year-old. He has referred me to a joint replacement surgeon who has already told me that a total knee replacement is not possible for me and he is not sure a partial will work, either. I am to meet again on April 8, after the joint replacement specialist has had time to confer with colleagues and locate any medical literature pertinent to my specific circumstances.

My own perusal of medical literature has not turned up anything substantive to indicate that this surgery is a good idea for me. I am still looking, although there are more possible negatives than positives to surgery from what I've been told and have read thus far. As my gait and bio- mechanics are at issue here, a new joint would likely wear differently and much faster, ultimately subjecting me to more frequent surgeries for the rest of my life. That is not something I would choose to do without learning all I can first. The options in this situation appear very limited at best, from what I know at present.

In the meantime, I am nursing my geriatric Siamese through an herpetic eye infection and feel fortunate to have the help of a devoted veterinary technician from the nearby cat hospital.

I have chosen to use this time for research, adapting to the use of a chair and finding answers to related questions, including those concerned with pain control. There do not appear to be many good or lasting solutions to this situation and getting current and reliable information is the best thing I and my doctor can do.

I thank everyone for your good wishes and e-mails. My blogging and e-mailing will likely be reduced, but your concern is appreciated nonetheless. I will update again after April 8.

Wishing everyone a happy Sunday and a good week ahead!