I've started venturing onto message groups, to share bits of my story, hoping to help others who are being failed by their doctors and physical therapists, as I once was.
I joined Yahoo's "chondromalacia community" as a recovered chondromalacia sufferer, a very rare species indeed. On joining, I was welcomed with a short e-mail that included 5 DOs and 5 DON'Ts for anyone coping with chondro. I didn't expect much from a "welcome to our group" message, but I was pleasantly surprised. The advice is better than you'll get from most physical therapists and doctors.
Below (and I would credit the author, but the note was unsigned) are the recommendations, with some brief comments from me after each:
--- Chondromalacia Do's
1) Keep searching until you find a doctor who will give you a thorough exam (1 - 2 hours), looking at the entire body. You'll probably have better luck with a pain specialist, osteopath (D.O.), doctor of applied kinesiology or a really good physical therapist. Most orthopedic surgeons give you about 10 minutes.
(RB: Yes! My experience is that doctors tend to give patients who have bad knees, but basically a normal range of motion and no noticeable swelling, the bum's rush, to put it bluntly. They will make a non-specific diagnosis, such as the dreaded "patellofemoral pain syndrome." Why getting a specific diagnosis matters: To fix what's wrong with you, you first need as much detail as you can get about what's wrong. Is there a problem with your meniscus? Plica? Cartilage? Tendon? So yes, do get a doctor who will investigate thoroughly.)
2) Become your own doctor. Do as much research as you can about knees, doctors and all the different treatment options there are. Concentrate on what is "wrong" with you, not just controlling the symptoms. This is a great resource to get started. Read each section on the patella:
http://www.kneeguru.co.uk/KNEEtutor/doku.php/?idx=patella
(RB: This is a great idea on two fronts. First, you need to understand how knees work to understand and take control of your treatment, instead of putting yourself passively in the hands of someone else -- a physical therapist or doctor -- who, in the best-case scenario, will see you for half an hour once a week. You need to know enough about knees to be smart about them the other 167 1/2 hours. Also, "don't just control symptoms" is spot on. Don't become a "med head." Drugs make you feel better, but do nothing for restoring your knee health.)
3) Try to keep moving your knee as best as you can. Try swimming, no-resistance cycling or walking if you can tolerate it.
(RB: The right kind of movement is absolutely critical. I designed my whole recovery program around this idea. But it has to be easy-enough movement so that your knees tolerate it well.)
4) Start with the least invasive treatments first.
(RB: Yup. One thing I learned, when investigating surgery: surgery begets more surgery. That should give you pause.)
5) Keep thinking positively! You need to have the attitude that you WILL get better.
(RB: Very true. At some point, I became an intensely negative ball of energy. I hated my life because I hated this hurting person I had become. But plastic happiness isn't the answer either, I don't think. Rather, it's attaining inner peace while finding a good, sensible recovery program that gives you hope. I started meditating and found it beneficial.)
--- Chondromalacia Don'ts
1) Don't simply accept that you "just have to live with it." Chronic knee pain can often be fixed.
(RB: Agree 100%. Mine was fixed completely, no surgery. So call me Exhibit A for that point.)
2) Don't even consider surgery until you've exhausted every other, less-invasive option and cannot function in your daily life.
(RB: This advice may sound harsh, but I think it's dead right. Surgery simply isn't much good for cases of chondromalacia. A famous New England Journal of medicine study discovered that knee-pain patients who underwent sham surgeries (the surgeon only pretended to operate and did nothing to the joint) did just as well, if not better, than those who had an arthroscopy that included trimming rough cartilage and flushing the joint with saline solution.)
3) Don't exercise through severe pain, even if the exercises are prescribed by a physical therapist. Pain is the body's way of telling you something is wrong.
(RB: This is where I'd modify the advice a bit. Don't exercise through ANY pain is closer to what I believe. Also, another tweak: Don't exercise through pain, or do exercises that cause pain the next day. This "next day" part is what trips up almost everyone, I've learned. Most people don't understand well enough how cartilage damage occurs and fail to connect next-day pain with the exercises they did the day before. Or if they make the connection, they just try to shrug it off. Bad move.)
4) Don't blindly accept your diagnosis. Doctors make mistakes, especially when it comes to knees.
(RB: Yes, I can attest to this. Doc 1 told me: You have arthritis. Doc 2 told me: No, you don't have arthritis (but he said I would if my joints kept deteriorating). So doctors aren't infallible.)
5) Don't stop exercising. Even if you can only work the upper-body or exercise in a pool, you've got to try to stay healthy and strong. Don't immobilize the leg - that could make your situation worse.
(RB: I would modify this one slightly too. When I suffered from knee pain, I gradually became a bit leery of the word "exercise," though I confess I use it a bit loosely myself. If you have bad knee pain, you need movement/motion. "Exercise" in too many people's minds suggests hopping up and down in an aerobics class or doing squats, which is not a good idea for bad knees, I found. But you do need to move your knees as often as possible; immobilization to "let it heal" is totally wrong-think with cartilage issues. I also would hesitate to use the word "strong," because it's a "save the knees by building up the quads" code word. The truth is, you need to be patient and restore the health of the joints. During that time, your legs may not be strong at all. But if the joint is getting better, you're moving in the right direction.)
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