Hi Doc, I'm just catching up after a while away and I'm SO glad to hear your wife's results were ok (I know it's old news to you but not for me...) And I'm hoping that you haven't posted for a bit because things are a little better? Maybe backing off of everything (including PT) that hurts has given your knee (and leg) the time and rest it needed to stop "yelling at" you so much? I'm going into month 8 (TKR right on 4/29/19) and can offer you hope for the long haul, but maybe not the good news you might want to hear.
I still have pain. Lots of it, mostly going down stairs, walking fast, getting up after sitting for any length of time, and doing lots of things that "stress" my knee either in force or direction. But THE GOOD NEWS is that I scuba-dived (without much pain) on vacation early November, swam almost 3/4 of a mile (ocean so buoyant and easier than pool), and after my 5th day trying to return to skiing, I actually enjoyed the run down. I should point out that my pre-op knee(s) were fine skiing gently with perfect form (they prefer to be bent, as long as the knees and toes are pointed in the same direction at all times). My "old" knee is still fine skiing (although not so much walking), but the new knee needed a very slow on-ramp and lots of convincing that it still likes to ski. Translation: it hurt like
the very first time down, which was half a run and the only one that day. It still hurts some of the time, but each time out it gets better. The most I've done so far is 3 full runs (Sunday), and it may take most of the season before I will be able to resume a full day of blissful gliding, but I'm here to tell you that based on my experience, TIME IS ON YOUR SIDE! It does get better, just so slowly that you can't believe that it actually is.
I was where you are now several months ago - angry, discouraged, resentful of the surgeon and in pain way too much of the time. As I write this (seated) I have a dull, aching "throb" in my upper thigh so I will have to shift, get up or massage it to alleviate it. And getting up means 45 - 60 seconds of debilitating pain followed by some pain as it works it way back to moving. Not fun, but much better than 3 months ago. And when I wake up it very painful on first moving but it does improve, but that's way better than months ago (maybe August) when I was not reliably sleeping through the night.
Everyone here has great advice and it's pretty much the same: don't be aggressive, avoid anything producing a high pain level as much as possible, and focus on healing supports (elevation, rest, nutrition, hydration, gentle activity/exercise). Most important, I think, is to be patient, both with your "rehab activities" and also with yourself. Had I found this board and followed this advice sooner I know I would not be in the place I am now. My in-home PT was a disaster, so 5 weeks later (when I returned to work prematurely but at least got my great PT) I basically had to start over from the beginning. FWIW, my PT only made "the switch" (not technically, but conceptually) from ROM work to strength work a couple of WEEKS ago. That's a full 6 months of ROM to get from 95 to about 120, with the primary goal of achieving less pain. It has helped me to use PT as a benchmark to gauge my snail's pace progress, which helps me remain encouraged. For the longest time I couldn't pedal the bike all the way around and just went back and forth. Then, when I could do a revolution it was with the bike seat at 5, then 4, finally 3, and then now 2. But the point during all of this is not the seat height - it's that I can do these things without pain. Discomfort, yes, but not pain.
As for surgeons, you are absolutely right that they are just the technician (carpenter), but going to Boston won't necessarily change anything. I went to Boston and my doc is now chief of arthroplasty at "the knee place", so without naming names suffice to say his technical skills are pretty unassailable. But I haven't even bothered to go back to him (in part b/c he changed hospitals) primarily because of what you said: he's the "bone guy" and his priority was "getting a good fit" and making sure you do not get an infection, and the joint doesn't fail. Soft tissue is NOT his department. Relying on an OS for PT/rehab guidance is like asking an oncologist for nutrition information during chemo - they don't know (or comparing to a carpenter, it's like asking them to furnish and decorate your home). But docs don't like to say they don't know, so they tell you (or your PT) what they think, without really knowing. No wonder you have no idea what to think... too many people telling you things that aren't true, but how are you supposed to tell the difference? For better or worse this experience should help you prevent a similar disaster next time, because you will know what to ask the next surgeon, and be able to evaluate his/her answers. I know I will be staying local, because I believe local docs rely on TOTAL patient outcomes (not just technically perfect appliance installation) for their success, and are better versed in what contributes to that. My Boston OS had no idea who/what kind of PT I was getting post-op, but I believe a local practice would have had a clue.
The best advice I got about PT was this: make sure you get a PT who is familiar with and confident in knee rehab protocols who can tailor your rehab to your situation. If your PT relies on the OS for "instructions", guidance or even advice, RUN! In a TKR the OS basically destroys the soft tissues surrounding your knee, but they are not specialists in the rehabilitation of this tissue. End of story. It's all up to the PT (unless you have infection or a failing joint) to help you get back to your (relatively) pain free life. That's a long-winded way of saying you might want to re-evaluate who you are using for PT - they are not all created equal.
I'm not sorry I did my knee, but I'm furious I wasn't better prepared. My timeline, in case it is helpful:
3 months - stopped crying when discussing my pain and situation
4 - 5 months - finally resumed sleeping "normally" (although wake up still involves an audible wince)
6 months - stopped completely "babying" my TKR in PT and started working on strength
7 months - went on vacation, scuba dived, snorkeled, swam (but didn't get to do beach walks)
8 months - started to resume skiing, although walking in boots is awful (as it was before TKR)
10 months - planning to attend a yoga retreat (although achieving "child's pose" may be out of reach)
I would love to hear from anyone who had considerable pain at 8 months (I JUST graduated from a 4 to a 3 on the PT evaluation sheet), who was pain-free at 12 months (or later), because I hope I am not giving you false hope. But my progress has been ongoing, if not steady, and the trend is definitely up, with no plateau in sight. They say it's a 12-month process... I hope they are right!
Sybilla