Tuesday, May 24, 2005

Knee-plus-eight-months anniversary: progress continues after my total knee replacement

Sunday 29-May-05 will be the 8th month anniversary of my total knee replacement. Tomorrow 25-May-05 is the 34th anniversary week. I feel like a teenager again, counting the weeks and months that my new knee and I have been "going together".

So far, I continue to be be extremely pleased with the TKR process. I've been lurking regularly over at the Delphi On-Our-Feet forum, and have been interested to see the wide variety of individual reactions that TKR recipients have had. There are many common experiences, but it is clear that each TKR is different, because each of us is different. The Delphis provide a great service to the TKR community as an online support group. Keep up the good work, folks.
That said, it is pretty clear to me that I've been extremely lucky with my TKR. I feel that this anniversary is an appropriate time to lay out the positives and negatives of my personal TKR experience. And yes, there have been some negatives.
The remainder of this post is simply a summary of the positives and negatives of my TKR experiences, as I remember them. These are simply my memories and my personal opinions. I am neither a surgeon or a therapist, and am providing these simply as a reference for those of you who may be looking ahead to a TKR in the near future.
Good pain control post-op:
Compared to the pain I had following my pre-arthroscopy cartilage and ligament surgery in 1969 (general anesthesia plus a nerve block to the leg), the pain I experienced following my TKR was nothing . I had a spinal / epidural with a button-controlled fentanyl drip that was simply awesome. Removal of the epidural catheter on Day 2 was painless. I was on oxycontin and percocet for a month or so following surgery, and I needed both of them to get through PT.
Recovery time:
I was on my feet at knee-plus-one-day, using a walker. And had graduated to a cane a week or so later. And was cane-free within about a month. My point of comparison was my earlier (1969) knee surgeries: 14 days in the hospital, and still being on crutches for weeks after I got home.
No pain:
After 30 years of being bone-on-bone in my right knee, and the last 10 of those being in chronic deep arthritic pain, I woke up in the recovery room realizing that there was no pain in my knee. Yes, I certainly was drugged, and had acute post-op pain. But the deep gnawing joint ache that I had lived with for so long was gone. This is one of the most astounding parts of my TKR recovery. I am basically pain-free.
Good flexion, good extension:
By the time I decided to go through with the TKR, I could no longer completely straighten my right leg (limited extension) nor could I bend my right knee much more than 90 degrees, if that (limited flexion). I woke up in recovery with full extension (although I had to work during recovery to retain that degree of mobility) and flexion >90 degrees. PT during recovery took my flexion >125 degrees, and at 8 months, I am well beyond that point. Although I have not been measured since my final in-office PT session.
Kneeling and squatting:
It had been years, perhaps a decade or more, since I had last been able to kneel or squat. I'm a serious gardener, and this limitation was a significant consideration for me. I can now kneel adequately although it still feels odd, and if I kneel for more than a few minutes, my new knee feels really loose afterwards. But I can kneel.
I can also squat down, and am coming close to being able to sit on my heels. I'm not there yet, but I seem to be getting closer each week.
In the last 2 years pre-op, I had almost completely lost my ability to walk for more than 15 or 20 min at a time. This had some obvious impacts on my general health. I can now walk comfortably for an indefinite length of time. I still get tired, and I can really feel my legs stretch when I walk hard and uphill. But I can do it, with little residual pain, and with an increasing amount of comfort.
My wife and I took a long-overdue vacation a year before my TKR, and spent a couple of days on a motor-vehicle-free island in the Chesapeake. To get around, you either walked or biked. I could not bend my right knee enough to pedal a bicycle.
We have a stationary bike that I used effectively during my recovery and PT. In fact, the bike helped me get through one of those recovery plateaus in extension. I recently graduated to an outdoor bike, and am now biking through our Appalachian hills for 45 min to an hour at a time.
Improved sleep:
Sound sleep during the three to five years pre-op had gotten increasingly difficult, due to the nagging chronic joint pain. I took prescription grade ibuprofen until my ears rang, and it initially helped. But eventually, not even high doses helped.
Post-op --- and post-recovery --- I am experiencing good sound deep sleep for the first time in many years. How sound? I no longer turn on the alarm clock: I wake up at my normal time (early), every day, ready to go.
It would be naive to try and convince anyone that a surgical procedure as invasive as a TKR has no potential negatives. Yes, I am generally a positive thinker, and an optimist. But I also think of myself as a realist about the hard things in life.
Recovery is HARD work:
I had a great TKR. I am thrilled that I did it. But recovery was (and is) very hard work. You need to push yourself pre-op to be prepared. You need to push yourself during recovery to maintain the extension that your surgeon gave you in your new knee. You need to push yourself in recovery to retain the flexion that comes with your new knee. I was told that there are no physical limitations re extension or flexion following a TKR --- when you are "under" ( i.e., fully anesthetized during surgery), your surgeon can bend and flex your knee far more completely than you will be able to once you are awake. Why? Because when you are awake, you can feel both the pain and the pressure. Your job during recovery is to gain and retain the mobility that comes with the new joint. This will be very hard work.
Agonizing PT during early recovery:
Therapy will hurt. Period. If you do not hurt during PT, you are not pushing yourself (or allowing your therapist to push you) hard enough. To quote my surgeon: "You cannot damage your new knee during PT. You can only cause yourself pain. And that's what pain medication is for". The good news is that for most of us, pain meds work, and that the intensely painful PT period only lasts two or three weeks. This is the period when you are recovering from the surgery, and the incision is healing most rapidly.
It is also the period when your body tries to heal the surgical invasion with scar tissue. Scar tissue forming in the joint can be a problem, and can severely limit your joint mobility. This is why it is extremely important to work through the pain. If you allow the scar tissue to form and become stiff, you may limit your joint mobility forever. In extreme cases, your surgeon will need to "release" the joint by means of another surgical event, one in which the scar tissue is cut and removed.
Pain meds make you fuzzy:
I hated being on pain medication because I could not focus. At all. I could not read. I could not concentrate. I could not follow the progress of even a simple sit-com on TV.
And work? When I attempted to work from home via laptop, it was a joke. There was no way I could take pain meds and work from home.
Constipation from pain meds:
Opiate-based pain killers inhibit intestinal peristalsis. Pain meds give you constipation. I had never in my life had a problem with constipation, but even with daily doses of a stool softener, Metamucil cookies, oatmeal spiked with FiberOne, and quarts and quarts of fluids --- I was constipated as long as I was on pain meds.
Reaction to stopping meds once pain subsided:
Pain meds are addictive, both physically and psychologically. For me, stopping became possible once I healed enough to get through a hard PT session without them. And then, I went through two days and nights of mild withdrawal symptoms. I itched and scratched and itched and scratched for two solid days. And then it was over.
Poor sleep for first few months:
TKR is a very invasive surgery. There is a lot of minor residual pain during recovery. For me, even during the pain medication phase, I had trouble sleeping for more than a few hours at a time. Insomnia is a common complaint on the Delphi joint replacement forum.
Fatigue during initial healing phase:
TKR is a very invasive surgery. Healing and PT will be exhausting, no matter how well you are prepared. I thought that I could get back to work within days of surgery, at least from home with my laptop. Ha. It was three months before I could handle full days at my office, and even then, I would be exhausted by the end of the day.
Depression and frustration during recovery:
Recovery takes time. PT is hard work. You will get frustrated that you are not making faster progress. You will run into recovery plateaus where you will feel that improvement just isn't going to happen. This is completely normal and to be expected. We all went through it --- this, too, is one of the more common threads on the Delphi forum.
And if you keep at it, you will get through the plateaus.
Pre-op fears that ended up being unfounded --- at least for ME:
Epidural/spinal anesthesia:
I had a real problem with the thought of having a needle and catheter stuck into my spine. In hindsight, I barely remember it going in, and could not feel it being removed. And as I mentioned above, the button-controlled pain relief that an epidural catheter enabled was one of the most wonderful post-op advances that has been made in the past 30 years.
If my fear of a spinal was irrational, my apprehension about having a urinary catheter in place was worse. Urinary catheterization was really nothing at all: insertion occurred after anesthesia, so I have no recollection of insertion. Removal occurred on day 2, and was not a problem at all. My surgery took >2 hrs --- being catheterized was a good decision. Some of the Delphis did not have a urinary catheter installed, with their surgeon believing that a urinary catheter had the potential to develop an infection post-op.
Deep vein thrombosis / blood clots:
Post-op blood clots / DVT can be a problem following joint surgery. I wore constantly inflating/deflating leg balloons while I was in the hospital, took preventative doses of an anticoagulant (in my case, warfarin, although there are many alternatives) and wore compression stockings (TED) during the first few weeks post-op.
I had no problems with DVT. However, one of the women in my PT class did develop a blood clot on her way home from the hospital. She described her symptoms as unusual pain and swelling. The event set back her PT schedule significantly. I asked my surgeon how I would know if I had a clot --- he said, simply "You'll know", and said that the pain, swelling and leg discoloration would make it obvious.
Post-op infection:
TKR is an invasive surgery. My entire TKR surgical team wore "space suit helmets" during surgery --- the air they breathed in and out (for their protection, and mine) was delivered via a tube. The surgical site was constantly irrigated with an antibiotic solution during surgery. I was dosed with two strong doses of an antibiotic by IV following surgery. And that was it.
I had expected a more vigorous antibiotic therapy post-op, and quizzed my surgeon about it. He said that his practice follows the most current recommendations available, and that since they switched to the practice described above, they have had NO post-op infections.
That said, he warned me that for the remainder of my life, ANY invasive surgery (even a dental cleaning) would require pre-treatment of a strong antibiotic dose. He then told me a story of a patient who developed an infection in a TKR 18 years after installation, and as the result of dental work (with no preventative antibiotic treatment).
Things no one really tells you ahead of time:
Healing and recovery take up to a year --- or longer:
Recovery will teach you patience. One of the most shocking statements from the surgeon post-op was when he told me that I should expect recovery to take more than a year. If he had told me that pre-op, I sure didn't remember it.
Recovery is full of plateaus. For me, when I got to about 85%, I began to slack off. This was a mistake --- I lost some mobility both in flexion and in extension. I've had to work hard to get those back. Apparently, this, too, is a common post-op occurrence. For most of us, the limitation to full recovery is NOT the new joint, but our ability and willingness to develop and retain muscle strength supporting that new joint.
Avoid the pillow:
Most of us with chronic knee pain figure out that putting a pillow under the knee to keep it slightly flexed at night supports the joint and minimizes the pain. However ...
... you probably should not do this after your TKR. My surgeon and his staff were very adamant about "Nothing under the knee". The rationale is that if you put a pillow under your knee during recovery, the newly developing scar tissue "sets" the knee in that slightly flexed position. This could limit your ability to fully extend your leg/knee.
I was probably more than a little obsessive about this during the first few weeks post-op. I would build a ramp of pillows and towels at night under my leg, so that the leg was both elevated (to reduce swelling) yet with the leg/knee in full extension (to avoid keeping it bent).
Did it help? I think so, at least for me. I do miss that little pillow sometimes, however.
The recovering joint gets HOT:
Recovery --- healing --- is an energy-intensive process. There's lots of activity in there as you heal. Biological activity produces heat, and your new knee will get quite warm to the touch. The first time I noticed this, it scared the heck out of me, and caused me to call the surgeon's office in a panic (I thought: "Blood clot!"). This is completely normal, and even 8 months after surgery, a hard day of work in the yard may cause me to have a hot knee that night.
The new knee is noisy (clunks and thunks):
Your new knew will be noisy. Expect to hear clunks and thunks. As the muscles, tendons, and ligaments tighten around the new joint, apparently the new joint will become more quiet. My surgeon tells me that this may take more than a year to occur. During the past two months, the knee has been generally quiet, unless I have been stretching it through exercise of some kind. THEN, the clunks and thunks are likely to occur again.
PT is YOUR responsibility, not your therapist's:
Pre-op, I thought that recovery would be a vacation. I'd go to PT 3X a week, and have the rest of the time to read; work from home; basically kick back and enjoy some time off.
Post-op, I realized that my recovery was UP TO ME. I relaxed the first weekend we had company, and didn't do my daily sets of PT. Monday at PT, I learned that I lost the progress that I had made the week before. This taught me to do PT at home at least 2X a day, if not 3X a day. When I would run into a plateau, I'd ask the therapist for more exercises to do at home to push through the barrier.
Every TKR patient recovers at a different rate. I was 51 years old when I had my TKR. Some of my peers in my PT class were 20 to 30 years older than I was. The age difference alone would be expected to cause a difference in recovery rates.
I was(am) lucky --- I am blessed with a supportive family; a supportive employer; and suffered few if any post-op complications. Not everyone is so lucky. However, it was fairly obvious to me that the people who were recovering quickly were those who were able to do PT at home, regardless of age, gender, or general health. The people who were having the most trouble regaining extension and flexion were those who were not able to do daily PT at home.
PT will be painful, especially to break-through the plateaus:
If you want to recover fully from your TKR, you will need to work hard at PT. And working hard at PT will cause you pain.
PT and exercise of the new knee is probably a forever consideration:
At almost 8 months, if I do not walk or bike or otherwise exercise my leg on a daily basis, I can tell the difference when I restart physical activity.
Ice will be your friend during recovery (CryoCuff, ice-and-isopropyl alcohol slush):
PT causes pain, and during early recovery, PT causes swelling. I found that ice was a great solution to both pain and swelling. My favorite cold treatment was a device called a CryoCuff made by a company called AirCast. This is what they used at my PT office, and it is a simple device: an inflatable cuff that you can fill with cold water via a hose connected to a one-gallon ice-and-water-filled drink cooler. Wonderful device. The cuff inflates to the shape of your knee (which an ice pack doesn't). When it gets warm, you drain the water back into the cooler, shake it up, and refill again with ice-cold water. For me, I got about 20 min of good cold before having to refill the cuff; and a 50-50 ice water filling of the cooler would last about two hours.
Many of the Delphis fill gallon-sized ZipLock Baggies with a 1:2 or 1:3 mixture of water and drugstore rubbing alcohol, and freeze them. The alcohol keeps the water from freezing solid so what you get is a frozen slush. The alcohol also lowers the freezing point of the solution so the slush is actually colder than simple water ice. I have not tried it, but as a scientist, it makes a lot of sense to me. You can link to the Delphi site and search on "slush" to follow the thread.
Pre-op strengthening and stretching exercises are important (my hero, Ginger):
Four months before my TKR, I met the wife of a business colleague who had had a bilateral TKR less than three months before we met. We met in Holland. Not only did she fly to the Netherlands, she and her husband were walking 2 or 3 miles each day from our hotel into a nearby town. Ginger, you are my hero. You inspired me to go through with my TKR.
Even more importantly, Ginger told me that the smartest thing she had done was to practice all of the PT exercises she would have to do AFTER her TKR BEFORE her TKR. She said that the strengthening and stretching that she did pre-op made her post-op recovery go much faster and easier. When we all got back to the States, she sent me the exercise sheet she had received from her surgeon. I took her advice, spent three months doing the exercises a few times a week, and for me, it also worked. One of my first post-op memories in the recovery room is that I could do a quad set and raise my leg up off of the surface of the gurney. I was very woozy --- and I certainly didn't lift it very far --- but I could do it.
Pain medications are good for you (you'll need them to work hard in PT):
My wife calls me a stoic. My pre-op life was full of chronic knee pain, and I thought that I had a pretty high pain threshold.
Wrong. PT will be painful. Take your pain meds. Otherwise, the pain from the healing process will interfere with your determination to exercise the joint. And PT/exercise is the key to a full recovery from your TKR.
Healing incision will itch as it stretches:
As the incision heals, the scar tissue shrinks and tightens. As you exercise the joint, you will stretch the scar tissue. This stretching will cause the incision to itch. For me (another common point with many of us), the itching drove me crazy. But eventually, the incision heals, the stretching stops, and the itching subsides.
Post-op bruising may be significant (especially with a tourniquet):
There are many ways to conduct a TKR. One of the more common practices is to put a tourniquet above the knee pre-surgery so that there is only a limited amount of blood loss during surgery. For me, the tourniquet was placed at about mid-thigh. Unfortunately, blood pools above the tourniquet (towards your torso), and this pool will form a huge bruise.
Of course, since I was on my back most of the time during the first few days post-op, the blood pooled in the back of my thigh. And, since I was wearing those wonderful white TED compression stockings to prevent DVTs, I never saw the bruise. Until, I got fully undressed one morning to do a sponge-bath and happened to catch a glimpse of the back of my leg in the mirror. AAAHHHHH!!!! What's that bruise?
I was on the phone with the surgeon's office in a heartbeat, thinking BLOOD CLOT!!! Nope. The surgeon's assistant very calmly asked me where the bruise was, and if it was painful and hot. When I told her it was at the back of my thigh, and that there was neither pain nor apparent inflammation, she said --- calmly and gently --- that this was completely normal and was the result of the tourniquet being applied during surgery.
Whew. What a relief THAT was!
My TKR was done on 29-Sep-2004. If you want to read my daily journal before and after the surgery, please go into the archives for that period.