Seeking advice about knee doctors and knee

This is not a request for medical advice; rather, it is a request for medical META-advice. I’m wondering to what medical practitioner or kind of doctor I should turn to seek medical advice. Here’s the situation, in both short elevator-statement edition and TLDR edition

***** short *****

I was having knee problems starting spring 2011 and had one ineffective operation in fall 2011 followed by 2nd operation by 2nd orthopedist in Feb of this year. Was recovering easily and quickly for 1st 30 days then something happened while casually crossing the street and could hardly limp around with 1 cane, went to 2-cane ambulation. Slow recovery since, now up to 6-7 mile walks (nice), but since the setback it feels like something in my knee is “loose”, something about the diameter of a quarter that roams around within a vertical 2-1/2 inch range and feels badly “wrong” when knee flexes if it is at the lower or upper portion of the 2-1/2 inch range until I push it down or up with my finger. Seen 2nd-op orthopedist and mentioned it, he dismissed it; spoke to physical therapy folks and some just said “don’t worry, work on strengthening exercises” and some said “weird, odd, no idea sorry”. I want to know who I should go to to understand what’s going on with my knee.

***** TLDR elaboration *****

I’m not a conventional athlete or anything but I’m a walker; I like to do 10-15 mile walks at least once a week and occasional 25 milers; it’s how I keep in shape and sort out my head and it entertains me. In spring 2011 I started having intermittent pain in my right knee. At first I ascribed it to age and arthritis, but by summertime I noticed that the pain was very tightly localized: when I had knee pain I also had a palpable pea-sized, umm, …thing, like a cyst or nodule of cartilage or whatever, located on the inside right knee just at or very slightly above where you can feel the bones of the knee joint articulate; and the pain was exactly precisely ONLY there, at the pea-sized cyst-thingie. So I went to an orthopedist at a sports medicine practice, got an MRI, a diagnosis of foreign body needing removal, and went in for the operation (arthroscopic surger). Very easy recovery, ramped back up to former level of activity. But in December I started having the same “bad knee days”, same pea-sized nodule, same pain. I made an appointment and went back to the orthopedist and then AND ONLY THEN the doctor tells me they did not find anything when they went in. (I guess some doctors figure if you are not told the operation was not a success, maybe you’ll get some placebo effect? But my insurance is a high deductible annual and I could have considered a second procedure if he’d told me at the time; by now, I was running out of 2011 so I’d have to pay another deductible for 2012). First orthopedist took the attitude that since they had not found any foreign body, my problem must be something different, and recommended more invasive surgeries with longer recovery time, in this order of consideration:
• microfracture
• OATS (osteoarticular transfer system)
• DeNovo
I did online research and this all seemed aimed at someone with general arthritic deterioration of the joint and I still didn’t think that fit. After all, on my “good knee days” I could still put in 16 mile walks. At a minimum, I thought that if that were the case I should probably wait until it gets worse since these were more invasive procedures.

Went for 2nd opinion, a different sports medicine orthopedist. New MRI. 2nd orthopedist concurs with ORIGINAL diagnosis, I’ve got a floating body, but it moved. “I could go in and fail to find it just as your first doctor did; that’s a possibility”. I accepted the risk. New arthroscopic surgery. On follow-up visit 2nd ortho showed me scope photos, pointed to one that showed what looked like a row of peas from a pea pod and said they were not loose bodies but he was sure this was the cause of my symptoms, and said he’d excised them. Also said I had not done anything to cause them, that it was a type of growth that just tended to spontaneously appear. Asked me did I want physical therapy. “Do I have to?” No, he said, I could exercise my way to recovery on my own, just don’t push it, don’t be going to the gym and doing weight-bearing exercises. “How about walking? Am I correct in assuming that I won’t do any damage walking as far as I feel up to?” He said that was correct, that if it started hurting I’d cut my walking short and that it was a good low-stress exercise.

Again I recovered quickly; the day after surgery I could walk around the neighborhood without a cane so I left it hanging on the closet door. Went a little farther each outing. It remained sore and painful at night and was very sensitive to position (had to take all the vicodin prescribed and then ask for more) and I had not regained full range of motion (e.g., could not sit on my heels even moving very slowly) but at one month post-surgery was up to 6 mile walks and had even briefly (like 80 consecutive steps) done some light running and was OK. Then one day as I was crossing the street, not in the process of a long walk just coming back from the post office or something, it suddenly hurt like hell. Putting any weight at all on the right leg felt like the knee was on the verge of bending back the wrong direction and collapsing out from under me, a gasp-producing pain with the promise of truly excruciating pain if I didn’t get off it immediately. I managed to get home only by holding onto the sides of buildings and sort of hopping on the left leg. I hoped I’d be better the next day but I couldn’t make it across the room and from then on was using the cane even indoors, even to get from bed to bedroom desk. Walking 4 blocks was exhausting and scary even with the cane (a misstep would create that horrible gaspy glassy pain and fear of worse pain and “wrongness”). Saw 2nd orthopedist and he said “you pushed it too fast. Here’s a prescription for oral prednisone, take 6 the first day, 5 the second day, etc until gone, tapering off”. I took the meds which had no impact. By now I had noticed that the inner workings of my right knee on the inside surface felt LOOSE to the touch of a fingertip; instead of the small pea-sized nodule, I now had a softer, clumpier batch of tissue fully the size of a US quarter. By “loose” I mean that sometimes it floats way up near the height of the top edge of my kneecap while sometimes it is as far down as below the knee joint articularion. And by “loose” I mean that when it’s in an uncomfortable place I can poke it with a finger and poke it down or up, or sometimes amuse myself in a morbid way moving it all around.

Oddly, it did not hurt with the localized severity that the pea-pellet had had from before, but the sensation of something being badly WRONG and about to fold up and collapse out from under me was definitely focused on this loose chunk of whatever-it-was. A friend lent me HER cane and I began using two canes and only then felt secure for going around outside. Towards the end of two more weeks I changed my return visit to the orthopedist and came in on my two canes. He put me on the exam table: “Does it hurt HERE? How about HERE?” No, not so much. But I can’t put weight on it. “Show me”. So I got to my feet and attempted to walk across his office and… walked across his office. It was the farthest I’d gone without cane-support in 3 weeks. I felt kind of silly and stupid. I’d gone in there prepared to be very pushy with this doctor, who isn’t a very good listener and doesn’t have what you’d call a good “bedside manner”; I’d gone in prepared to insist that something had obviously gone badly wrong, and I needed to know what the hell was going on with my knee, assuming there was any way to know, and what my options were. But I was quite distracted by finding out I could at least walk again. (I had actually spent some time window-shopping the price of a good rollator and getting used to the unpleasant idea that maybe my knee would be like this the rest of my life). “Do you want physical therapy?” he asked and this time I said yes.

For the next week I took one cane with me but carried it one block and used it the next, then less, then finally left it hanging on the closet door again; the PT folks made me do stretches and extensions with weights and made me walk against elastic-band constraints; and they encouraged me to walk but to increase the distance only gradually. First to the post office and back, then beyond to the east edge of Manhattan and back, and so forth, culminating in a recent walk where I put in nearly 7 miles. During my last PT session, the PT person I was working with said it was time to phase me out, and maybe make next session my last.

But I’ve still got that big disk of loose tissue and it still feels like it moves into places it does not belong. I’m seldom in severe pain, just sharp twinges (shuffling around waiting for a train on the subway platform, straightening out that knee gave me a bad 3-4 seconds yesterday), but when that chunk of mystery knee-tissue is up high or way down low it FEELS like it’s on the verge of causing me excruciating pain, as if it would get bound up between other bones or get under a tendon or ligament or some such thing and leave me folded up screaming on the sidewalk.
• I called 2nd orthpedist’s office and they said I have no return appointments and need not come in “unless you develop some kind of critical complication”. This doctor is NOT a good listener, is dismissive and always in a hurry. Otherwise I would make an appointment to return, just to ask about this.

• I am not at this time contemplating further surgery unless there’s a likelihood of it not continuing to get better, or even worsening. I’m so grateful to be walking at all, and I know doctors are artists not scientists and can’t make guarantees. I’m not much inclined to roll the dice again. But dammit I sure would like to know exactly WHAT is going on with my knee, if someone in the medical profession can tell me at minimal risk of messing things up trying to find out.

• I want to ask some kind of doctor whether it is reasonable to keep on walking longer distances and doing my exercises and that I should just assume my recovery will continue? Or is there a risk of whatever happened one month post-surgery happening again? Can I escalate to 10 miles, 15, 20, 25, 30? Plan a big celebratory 50 mile walk for October or thereabouts? Do I get to assume there are no permanent limits until I hit one, or do I risk messing myself up by taking that approach?

• The PT guy who said I don’t need to come any more also said, when I asked about when I could try running a little, “Well, go ahead and try it”. Other PT people have been far more cautious but they weren’t the ones telling me I was done with PT. And I used to work out with the leg press, and do some squats hole holding a barbell. I want to know who to ask: should I just “go ahead and try” things?

• My inclination is to schedule an appointment with yet another orthopedist, just to ask these questions, but I don’t know what kind of reception to expect from a doctor under these circumstances: here’s this dissatisfied patient who has been to two orthopedists for two operations in less than a year, showing up in this third office and asking “what the hell is this” and (pretty unavoidably) complaining about the other two doctors. Maybe going to another ortho is not such a good idea. I could end up looking like a hypochondriac and/or a patient who is going to be Big Trouble for any doctor (“the last two doctors did nothing or did bad things and I can’t ask them any questions”). Maybe I should go to the 2nd ortho after all despite his manner and brusque dismissive way of answering my questions?