Dear Cindy,
I'm sorry you're upset by my interaction with doctors. In your situation, it's literally vital for you to be able to trust and follow the advice of your doctors, no matter what horrible things you have to go through, and I don't want to say anything to make you doubt them or regret your trust in them. You've had a bit of bad luck (I'm thinking about the gyn who didn't notice the tumor), and a bit of good luck (the pcp who suspected it, found it, and started treatment immediately)... and it sounds like you have a team now that you can trust. Follow their advice!
As for me... shall I tell you my long history of bad interactions with doctors - or shall I limit myself to orthopedists?
To a man with a hammer, everything looks like a nail. To an orthopedist with a scalpel, everything looks operable. (I have the scars to prove it.)
To begin at the beginning: I was born with an incomplete hip socket, which my parents noticed when I started crawling -- on two hands, one knee, and one foot, with the other knee up in the air. The orthopedist in whose office I ended up proposed pinning my leg in place - to which my father objected: As a child he knew a girl who'd had her hip pinned, who spent her life as a cripple as a result. My father won out; our family doctor gave me a brace to wear in bed (to keep the legs in position), recommended teaching me to ride a bike as soon as I was old enough (to strengthen those leg-positioning muscles), and told my mother to keep me in oxfords rather than letting me wear fashionable shoes. The result of disregarding the ortho's advice: the hip socket eventually grew in normally. Until other problems hit me, I had normally-functioning legs, and even now my hips are in better shape than a 60-year-old diagnosed with MS nearly 25 years ago should expect.
My next run-in with an orthopedist was in my late teens. I've probably told you the story of my parents' complicated marriage. One day my mother was driving my brother Matt, a friend, and me from Queens to Poughkeepsie, where the friend lived and where the rest of us were to visit my father. I was sitting in the back seat, behind my mother, when I saw a red light approaching... and noticed that my mother wasn't slowing down. I turned to my friend, at my right, to say, "Isn't that a red light?" - and at that moment, we crashed head-on into the car that had the right of way. I was thrown so hard against the back of the driver's seat that it knocked the breath out of me. There were real injuries to others: a broken jaw, a cracked kneecap - but it looked like I had nothing seriously wrong.
Not long after, though, I began to feel funny in the shoulder that had hit the back of the seat... it felt vaguely out of position. Knowing what I know now, I would have seen a chiropractor, masseur or physical therapist, but I was in the hands of my mother, who felt guilty for the accident and was ready to do anything to help her darling daughter. So first she took me to an internist (who played with my nipples and gave me a prescription for valium... but we're not getting into my general medical history here), and then to an orthopedist. The ortho announced that it was important to operate to cure the shoulder injury. So he removed the acromioclavicular joint - a treatment, as I later learned, usually reserved for athletes in severe pain who need to keep playing. (It's supposed to be followed by PT, but this guy never mentioned that - he just cut, collected his pay, and left.) The result of following the ortho's advice: I have a hole in my shoulder, a scar, and chronic pain worse than I had before the surgery. *
Wait! - there's more! A few years later I was in a college show. The student set-designer, who had no training, designed a bridge that we all had to dance over. There was one stress fracture, at least one sprained ankle, various other problems... and I developed shooting pains in my feet that ended up focusing on my big toes.
Trustingly, I saw an ortho. "I think I've injured my toes" I said, assuming he'd come up with a solution for the pain. So he examined me, and x-rayed me, and finally gave me a diagnosis: "Yes," he said, "you now have osteoarthritis in your toes." I was glad for the dx, and eager for more information: "What do I do now?" I asked.
"You pay the receptionist on the way out," he said.
I was too stunned to ask any questions. I picked up and left the office (paying the receptionist on the way out.) I've never known if this was his idea of a joke, or if he really was that much of a bastard...
Years later I fell into the hands of another ortho, who proposed to improve the state of my chronically-painful toes. I agreed to let him operate on one toe. So there I was in surgery, all ready for the operation, and he hands me a form to sign: I was to agree that if the operation doesn't solve my problem, I wouldn't sue him. I should have gotten up and walked out right then... but I was still a trusting innocent. I let him remove a bone spur from the joint. So now I have a slightly-more-flexible toe, which hurts more than it did before, as well as a scar. (...and the ortho has his fee.)
I found myself in the hands of another ortho recently, who informed me that the best way to ease the pain would be to freeze both toe joints, to *prevent* flexibility. I had learned my lesson by then: I thanked him and left his office.
So that's where I am with orthopedists: I trust them only as far as I have to.
You say, "As long as you want to do things your way, including persuading the doctor against his best judgment, you will have to deal with the consequences. Why go to him if you're looking for reasons not to do what he recommends? " My answer: I went to him because the ER folks said I had to. I went to him because, when I emailed my pcp about the injury and said the ER was sending me to this guy, she replied, saying she suspects I'll just need short-term treatment, and "Dr Troy is fine for this."
I trust *her.* A couple of years ago, when I contacted her in distress to tell her my neuro (whom I usually trust) wanted to give me a picc line for extra treatment of the Lyme disease that was already cured, she responded by refusing permission for the treatment. She will provide treatment if it's even vaguely needed - but she's my true partner in limiting unneeded treatment.
Note: I did not set out to "persuade the doctor against his best judgment" - I simply set out to explain my situation (with the backing and advice of my friend Gisela, who's a PT and knows my limitations), and to request any possible flexibility in his recommendations. After he viewed the new x-rays and saw that my injury had not been exacerbated by my activity, he told me to go ahead and do what I've been doing.
Come to think of it - maybe it's time to send my pcp a short description of my visit to Dr. Troy, and see if she thinks (as my lawyer brother does) that I need a 2nd opinion - or whether she agrees with Dr. Troy's ultimate decision.
Anyway - thanks for your concern and offered help! I've started a shopping list - that will be my next email.
Marion
* from the web:
http://orthopedics.about.com/cs/generalshoulder/a/acarthritis.htm
"How is AC arthritis usually treated?
Treatment of AC arthritis depends on the severity of symptoms and the presence of other shoulder problems including impingement syndrome and glenohumeral arthritis. If the symptoms of AC arthritis are mild to moderate, anti-inflammatory medications and physical therapy are the most common conservative measures. If the symptoms do not respond to conservative treatment, or if the pain is too severe, then surgery may be necessary. The surgical procedure involves removing the end of the clavicle (collar bone), and allowing the AC joint to fill with scar tissue. This allows for normal movement of the AC joint (which is minimal even in normal shoulders), but removes the rubbing together of raw bone ends."
