PFR-Knee pain-Who has had this?

[RGB]

Hi Dave. I note your 'manifesto' on how to deal with patellofemoral cartilage loss which you posted in another thread. I agree wholeheartedly, having followed a similar journey myself. That includes various treatments, including treatment with Dr Saw in Malaysia for kissing patellofemoral lesions. It didn't work for me and, like you, I find it hard to imagine anyone trying harder or sticking to the rehab protocol more closely. I have taken the next step and had a PFJR so there may be something from my experience that you find useful. I am at the 1 year post-op point. Overall, I am very happy with the result so far and I think it's going to get better yet. To put it all in perspective, I'm 55 years old and have been very active. Here are my thoughts/experiences:
1.  There's safety in numbers. Find a surgeon who's done lots of these with the new generation 'onlay' prostheses and has a low revision rate. The surgeon I used in Australia does 15 or so per annum (in addition to his 300 TKRs pa) and hasn't had a revision in the 5 years or so since he switched prostheses (to the Zimmer GS).
2. I found the initial recovery very easy. I was walking (slowly) without crutches the day after the op. Just be methodical and don't do anything stupid.
3.  It will not be a new and natural knee. There are limitations and I'm still finding mine. They are reducing over time. For instance, I cannot do a full one-legged squat. At least, I can but it's very clear that it's not good for the knee. The contact area is less and the loads are much higher than with a natural knee. You can feel them! So I stop at about 50 degrees. I can comfortably do full two legged squats though and I have full extension/flexion (to the point I can touch my heel to my bottom).
4. There's still a volume limitation which I'm trying to balance. I can cycle on the road - so a 50km ride at about 35km per hour, with a 10 minute out of the seat steep hill finish is OK. I can hike - so a 5 hour fast and reasonably steep single trail walk (without a pack) is OK. I can mountain bike - so 4 hours of steep mixed uphill/downhill single trail riding is OK. And I can rock climb - not quite back at my former grade but not far off. However, I cannot do all of these in a short space of time. Probably one strenuous activity per week is my limit and if I exceed it the knee swells and puts me out of action for a few weeks. I think that if I do this too often I will cause myself long term problems so I try very hard to avoid it. I can do less strenuous stuff during the week though - flat road cycling, rowing on a machine etc all count here.
5. I'm hoping to add skiing to the list of activities - we'll see what the (Southern Hemisphere) winter brings. I used to ski a lot so this is a big thing for me.
6.  I am very, very happy I had it done. Just being able to walk up and down stairs without pain and very loud noises is fantastic. I'm hoping to last another 10 years before needing a TKR. However, even if I get to another 5 years before needing the TKR I'll regard it as a good outcome. This is my last 5 years of a very active lifestyle and being able to do stuff with my kids (currently aged 12) which I did growing up is priceless.

Finally, a slight disclaimer. I've had what I regard as a really good outcome and I'm happy to share it. But I'm not a doctor. So no medical advice is given and no responsibility is accepted! Good luck.

[Dave33]

RGB - thanks a ton for this - exactly the info I was looking for - someone close to my age, with similar athletic interests. My road and mountain bike have been sitting in the basement for 10 years, with me dreaming of the day I could ride them... it's great to hear that you're back in the saddle.

Couple questions if you don't mind (I considered sending them to PM/email, but I figure the original thread creator might chime in on our discussion, and it might be beneficial to all - however if he or a moderator wants to move, no problem)

1. Can you feel the implant? Does it feel weird/take time to get  used to? Can I ask you weight and height?

2. Did your surgeon give you an idea of the lifespan of the implant based upon your age and activity level? I've heard and read the answer is anywhere from 12 years to "indefinite", but I'm thinking your surgeon with his experience might have a more valuable opinion. For the most part from what I read, it seems that the majority of failures are due to arthritis in other parts of the knee joint - and loosening is rare.

3. If it was an emergency, would you be able to run on it? Is a slow jog once a week (6 mph on a flat treadmill for 20 mins) out of the question?

4. I'm a touch troubled by your 'volume limitatation' description. What part of the knee swells? the front, like where the pain was before? Is this getting better with time/do you or your doctor expect you will be able to do more with time, or are you at your long term limit? Are there certain activities that tend to promote this type of response more than others?

5. Can I ask how long it was post surgery until you were able to ride a bike to workout levels?

Thanks very much again - you offer a rare insight.

[RGB]

Hi Dave. Yes - I feel a bit guilty for taking over this thread. Hopefully Mr F doesn't mind too much. As it happens, I broke my ankle last week - same leg as my bad knee. I was zip-lining with my son and hit a tree. So my answers to some of your questions will become a bit more theoretical until normal activity is resumed. Anyway, in answer to those questions:
1.  Yes I can feel the implant but not at rest. It's very slightly stiffer than a natural knee and noticeably less able to absorb shocks when it's bent. There's a slight muscle hesitation on things like stairs which I am starting to overcome and I have a very small level of crepitus. I'm still down on power from that leg when cycling although not because it feels different. The main time I notice it is deep flexion under load. Because the contact area is less, the pressures in the knee are significantly higher. It's not pain but I am aware that it's not such a great idea. The thing I hadn't initially appreciated is that the plastic patellar button leaves the prosthesis and moves onto the natural cartilage for angles over something like 110 degrees. There's a lot of pressure at that point and the areas of cartilage that are being stressed are weight bearing when the knee is straight. So there's a need for some care. That said, my surgeon seems completely relaxed about cycling although I'm not sure he appreciates the steepness of the uphills that I'm doing. Oh - and I'm 5 foot 10 and about 165 pounds.
2.  The lifespan of the prosthesis is not such an issue for me because I only have part of my medial meniscus. So my need for a revision will be driven by tibio-femoral arthritis rather than the PFJ wearing out. The surgeon expects a TKR in 10-15 years if I'm active but sensible. My own reading suggests that wear and loosening of a well positioned PFJ is now rare.
3. If it weren't for my meniscus issues I'd be quite confident running, especially on the flat. My understanding is that the prosthesis doesn't take much load running unless there are hills involved. I haven't tested this with the surgeon though and I haven't run more than a few hundred metres since the op.
4.  It's general swelling in the joint rather than anywhere specific. There's no pain but it does bulge a bit when bent - so you know you've done it. My physio is pretty confident that this will improve over time but I can't say for sure. The surgeon was pretty clear - when it swells, stop. As I said, my current limitation is for one intense bout of activity per week but for more or less unrestricted other stuff. That's not to say that I'm coasting - I row on a machine pretty hard, and cycle on the flat hard as well. It's just that I can't do too many high load activities at this point.
5.  Flat road cycling at a rate that gets the heart really pumping was at 6-8 months.

Hope this helps. It's good to be talking about it to be honest. I've had so many interventions on the knee, none of which have really worked until the PFJ and it would be good if my experience benefits someone. I see various threads talking about the success of various cartilage restoration techniques and I'm now a bit cynical. Dr Saw's process in Malaysia was my best shot and it didn't work - at least not for me.

[Dave33]

Great info. Thanks a ton. I'm going to print off your replies and bring to my surgeon for the consult next month - I think you've officially pushed me over the edge to commit to getting this done.

It's funny, I've had 7ish surgeries on my knees, including nasty osteotomies, and I haven't been bothered or nervous about any of them, but I'm very much anxious about this. I think the idea of an actual implant, and actually "burning bridges" at a relatively young age on an uncommon procedure is making me very cautious.... however, the possibility of getting more active with my kids is very hard to turn down.

Sorry, two more questions that come to mind... how would you rate the first few days of pain vs other knee procedures you've had, and how long was it until you could drive?

cheers

[RGB]

Yes - I was very nervous before this op and not before other surgeries. In the anaesthetic bay I seriously contemplated not proceeding - which is unusual for me. It's the optional nature of it and the risk that all you do is make things worse. It's small but it's there. There was also a nagging doubt (for me) that all I was doing was demonstrating an inability to adapt to a new situation.  I could get through a normal work day easily avoiding activities which led to pain so it was all about expanding the leisure time functional envelope to something approaching that which I had previously enjoyed. The surgeon was careful to explain that there is a material chance of ending up with pain that that wasn't there before, or of the tibio-femoral arthritis advancing at such a rate that the PFJR was a wasted operation. The way he explained it, he was confident of restoring the mechanics of the joint but some people just react badly to the prosthesis and end up with pain. I just had my one year follow up and he asked how I was. I said fantastic and he wiped a mock hand over his brow and said 'Phew'. So I think he was also a little nervous.

Regarding pain, there wasn't much at all really although I guess it depends on the medication regime. The main thing is that it goes on for longer than an arthroscopy. I was on a form of oxycodone for a couple of weeks, then just paracetamol. I tried to stop the paracetamol at the 3 week post-op point but my physio made me start again. He said that all I'd do was inhibit my activity. So I was on slow-release paracetamol 24 hours a day until about the 8 week point.

On driving, I wasn't at home when I had the op so there wasn't the opportunity to drive for the first 6 weeks. However, I was able to drive immediately after that.

[RGB]

Hi Dave33. What did you decide on the PFJR?

[Mr.F]

Hello everybody,

Sorry for not posting in awhile.  I have had the strangest work year in my life.  I know I do not post about what I do for a living.  And I will keep it this way.  Its been a wild year for me medically.  I have been dealing with GI issues.  (Yes I am still walking and running).  One test lead to another, which got the doctors thinking, and 3 tests later more questions than answers.
Putting this aside my running miles are down from last year.  Yes I am getting out and walking, running, or a combination of both.  I am averaging about 50 miles a week.  I would like to get out more but I do not want to injure myself.
This weekend our running club has its annual FireCraker 5K.  Like in the past several years I will be volunteering and cheering on the Fit to 5K group (our new runners).  It will be exciting to see 20-25 smiling faces as they cross the finishing line.  (I work bib pick up today and tomorrow, along with registration the day of, and course marshal around mile 1).
After this I have my most exciting race.  I know after about 60 half marathons, 2 marathons, and 2 ultras what race is exciting?  I will be running (walking and/or crawling) up Loon Mountain.  July 8 a friend and I are going to run up 6.6 miles on Loon Mountain (a ski slope).  The average angle is 14 percent.  The last 1K starts at a 40 degree and ends at a 46 degree angle (hence the crawling).  This area is known as the walking boss.  (I am so looking forward to this).
In August I will be running the John and Jessie Kelley Half Marathon.  What is interesting about this event is that it is free.  All you need to do is bring a food donation.  (In the past it was an 11.6 mile road race).  The only issue is that it is in August and it is hot and humid.  I bring a hydration pack.  This way I do not need to worry about aid stations and if they run out of water.  (If so people in the area pitch in and make sure there is water).
After this I am preparing for the Hartford Marathon.  I am looking forward to this event.  Last year was amazing.  I finished first among the physically challenged athletes.  I am looking forward to a great time, running (intervaling) with other challenged athletes and making some new memories.  The only issue is that each athlete (participating through Achilles International) has to raise $250.  If not you have to pay for your own entry.  New year and another challenge I will take on.
As for my running year, I have dedicated it to SGT Brandon Augustus.  (We ran over 5000 miles together last year).  Along with this I am helping others achieve their goals.  I have been running with multiple groups, and some individuals, weekly.  One person has run a 10 mile race, several half marathons, and is looking to run in her first marathon.  Others are competing for the first time in a 5K races.  One person is moving from a 5K to a 10K.  It is amazing to see all of their progression.
Finally I need some suggestions.  Every summer I challenge myself to something insane.  I have held a plank for 45 minutes (plank challenge of 2015), in 2016 it was 34 half marathons (I believe I did 7 in 31 days), and in 2017 it was averaging 20 miles a day in the month of July (643 total miles).  So I looking for something new in 2018 (besides running up a mountain, ultra, and marathon).  Please let me know what you think this summer's challenge should be.

Thanks for your time,

Mr. F

Now get outside and get those miles in

[Dave33]

Hi Dave33. What did you decide on the PFJR?

Hi RGB - I just had the appointment yesterday! Surgeon booked me in for a right knee PFJR, surgery is in September. He uses the same zimmer GS implant that you have, which is good, considering your positive result. He did say I was a bit on the young side, but thinks the implant should last for at least 15-20 yrs.

I was hoping to convince him to do both knees at the same time, but he wanted to do one first and make sure it worked out well for me, and I can't argue against that. I am nervous about it, but am cautiously optimistic. I will give you a ton of credit in terms of my optimism - really appreciate your prior posts.

How's the ankle? Everything still going well with the implant?

[Dave33]

Hi Dave33. What did you decide on the PFJR?

Hi RGB - I just had the appointment yesterday! Surgeon booked me in for a right knee PFJR, surgery is in September. He uses the same zimmer GS implant that you have, which is good, considering your positive result. He did say I was a bit on the young side, but thinks the implant should last for at least 15-20 yrs.

I was hoping to convince him to do both knees at the same time, but he wanted to do one first and make sure it worked out well for me, and I can't argue against that. I am nervous about it, but am cautiously optimistic. I will give you a ton of credit in terms of my optimism - really appreciate your prior posts.

How's the ankle? Everything still going well with the implant?

By the way, my intention is to PM you my email address so we can stay in touch without me annoying Mr. F; my understanding is that I need 20 posts to do so.. .so I'll try to contribute a bit more to the board and send it over to you.

[RGB]

Hi Dave33. I've set up another thread in 'General Knee Questions' so we can leave Mr F in peace. Happy to continue the discussion. My guess is that we'll end up in similar positions after your PFJR so there will be value for us both in sharing our experiences. I'm happy to do this via email but it will be some time before I get the 20 posts required to do a PM and I'm not keen to put my email address up publicly. Ankle is now fine. Rehab took 8 weeks - mostly just keeping movement and strength whilst it healed. Easy compared to knee rehab! The main impact is less time to strengthen the knee before my planned skiing holiday in a couple of weeks. I'll need to be a bit more cautious but I'll still give it a go. My main issue will be to keep out of the mogul fields. Once I see them the temptation will be strong. In the meantime I have bought my first full suspension mountain bike and it's great. So much easier than the hard tail I used to ride 20 years ago. I'm in New Zealand and there's some very good single track riding close to home. I've been careful - only 2 hour sessions so far (post broken ankle and general weakening of the knee) and it's pulled up fine. See you on the other thread. Regards.

[Mr.F]

Hello everybody,
I am sorry I have not posted in a long time.  I have been dealing with none knee related health issues.  I have had a couple of cancer scares.  So far no cancers have been seen and no markers for cancer have come up positive.  (I have had 7 procedures, numerous blood tests, and too many medications).  I have one more procedure next week.  We are narrowing down the possible issues.
Because of this my running has, and gym days, have been decreasing.  I am getting back into my routine.  I have found a new passion, trail running.  I never thought I would be doing this.  It is an incredible, amazing, feeling out on the trails.  At one with nature, the sounds and sights are unbelievable, running with wild animals, up and down hills and mountains, sweating to death, and pushing your body to its limits.  I am hooked.
My knees are doing as best as they can.  I am making sure to keep my leg muscles strong.  I do believe this is helping.  Also lots of stretching (all day long).
Along with this I have dedicated my running year to help others reach their goals.  I am helping coach my local running group's Fit to 5K.  Once that ended I am helping some of these runners maintain their distances and helping them push forward and challenge themselves.  One of my friends who took sometime off from running during the winter and spring got back into training for a 10K so we are tackling the miles and pushing her speed.  Another friend, and running guide, asked me to run with her and her friend at a local half marathon.  I did not know her friend had 4 operations in the past year and 2 were heart operations.  This was his first half marathon since all 4 operations occurred.  I helped pace him the entire race.  Another runner I met last year is attempting to run a 2 hour half.  She and I have been running together for about 2 months asked me to pace her in an upcoming half (in October).  I am excited about this.  And my wife was out with her friend recently (morning yoga class).  They went out to eat and were talking.  My wife's friend mentioned her husband wants to train for a marathon and has no idea how to or who to train with.  My wife mentioned "how about Mr. F" (no first names will be used)? without missing a beat the waitress said "Your husband needs to train with Mr. F, he is the best." 
It is nice to know that hard work and dedication is paying off and I am able to impact other people's lives.
I am going to attempt to add a picture of the stairwell I ran on Thursday (part of the 6.11 miles with 1287 feet of elevation).  I will be out running trails tomorrow.
Take care,
Mr. F

[Mr.F]

RGB and Dave33,
Thank you for posting, helping each other, and sharing your experiences and knowledge.  With knee issues, and trying to find help, I am always open to this.  Please post away.  I was happy to see this interaction.  (Please keep posting because I want to know what is going on, just like everyone who reads this).  What was funny when I got back on my post I thought I clicked on the wrong person. I went back and got hooked.
Some things you may not know...I am 48 years old and I have had 8 operations (micro, Fulkersons, PFR, and revision on both knees). I was born with a genetic defect (or that is what my doctors believe).
Dave I know you and RGB have gone over all of this but here are my thoughts, experiences, and feelings:
1. Have you had a fulkerson or osteotomy, and how did the discomfort and recovery rate against the PFJR operation? Yes I had Fulkersons in 1989 and 1990...easier recovery rate than PFJR (both knees in 2005).  After Fulkersons I was mobile in 3 weeks (still needed to take it easy because once one knee went the other followed). Driving in 2-3 weeks, walking in 3 weeks, and back to my routine in a month.  Bi-lateral PFJR was well pure hell.  The one thing the doctor did not tell me is that a small percent of the people who undergo this type of operation get a bad side effect.  There is this mind numbing sound and pain that does not stop.  It is constant.  No way to stop it. Well I got this.  I researched it and found out if it lasts up to 2 years it does not go away.  I was lucky mine stopped around 20 months.
Recovery from both knees is a killer.  I can remember sitting on the bathroom floor taking 8-10 minutes putting on 1 sock, another 5-10 minutes putting on boxer shorts or shorts, and taking at least 20 minutes getting from the fourth floor (corner unit) to the car downstairs (yes I took the elevator).  Physical therapy was brutal.  One thing my PT did was bend me in different positions (I called it doing the pretzel).  I would save my pain pill until near the end of physical therapy.  That way it would kick in on the ride home.
Walking took several months.  Walking up and down stairs well that took 2-3 more months.  Driving a stick shift car took 3 months.  I did not start running until 2014 (I was scared I would destroy my implant).  I could run if needed.

2. Are there any movements you find you can't do, or causes pain? The one movement I have issues with are squats.  This is simple I blew out my knees (two different times squatting).  One with weights (my initial problem) and squatting down to pick up a screwdriver.  At night I have had issues with my knees locking up (bad cramps).  Find a sports chiropractor. Have him/her roll out the knee and surrounding muscles.  You feel abused when this is happening but it feels so much better that night and the following weeks.

3. What kind of implant do you have (model/name?)  I have the Stryker Avon (I have been happy with it). 

other questions you asked:
1)Can you feel the implant? Does it feel weird/take time to get  used to? Can I ask you weight and height?  Yes I can feel my implants.  It does take sometime to get use to the implant. When it gets cold my leg gets cold (you can feel the metal inside you getting cold and if someone touches the area they can feel how cold it is.  Yes very strange). When I have issues with my knee it gets cold.  My wife jokes around and says she knows when I am not feeling well because I feel cold.  It took me a good year to fully recover from my PFJR (both knees were destroyed before the operation so I did not have a good knee to stand on and my leg muscles were shot).  I am 5 feet 10 inches and at the time of my operation I weighted about 140 pounds.

2. Did your surgeon give you an idea of the lifespan of the implant based upon your age and activity level?  My doctor said anywhere from 10-15 years if you are not super active.  Mine lasted 5 years in one knee and 6 years in the other knee before revision.  Things that can impact your implants are scar tissue, tearing a tendon or muscle, weak leg muscles, I have issues with riding a bike (my implant hurts the next day and you can hear and feel grinding of the knee) and swimming (my knee pops and feels like it is hyper extending- if you are in the pool with me and I kick you can hear the pop).  OH-MAKE SURE to talk to your doctor about medications before any dental work.  The bacteria in your blood can impact your implant.

3. If it was an emergency, would you be able to run on it? Is a slow jog once a week (6 mph on a flat treadmill for 20 mins) out of the question? You could possibly run on the implant if needed.  Work on building up your leg muscles (this supports the implant).  Once your leg muscles are built up I would suggest fast paced walking before going jogging.  Start with a half to 1 mile.  Walk at a fast pace for you.  If your knee(s) do not hurt you could possibly increase your distance .25 to .5 miles per week. (Ice your knees once you get home).  If you feel good and you are willing to take a chance (I am not telling you what to do, I am stating what I did),possibly you can start jogging (after you worked up to 3-4 miles of walking).  I would suggest an interval (1 minute of jogging followed by 30 seconds of walking at a fast pace for your).  I did longer jogging intervals (if I knew what I know now I would never have done 5 minutes of jogging and 1 minute of walking).  6MPH pace is something you could possibly work up to.
I have participated in 120 different races ranging from 5k to 30K (3.1 miles to 31 miles).  The most distance I have done on a treadmill is 42 miles (broken up into 3 parts) and another time 55k (34.1 miles) all at once.  I have run, interval, and walked 42 miles on the roads once (took me 11.5 hours). At my best I can run a 6:40 mile.  I am involved in several running groups and I just started trail running.  During some of the events I have placed in my category and I have placed in my age group.  I do contact race directors and inform them about my knees and what I have run in the past.  Last year I walked and ran about 5228 miles.  I am not saying running is possible for everyone.  I am letting you know about me and what I did and currently doing.  Physical activity is up to you, your family, and doctor (my family got me into walking and running, they support me (train with me and run/walk events), and my doctor keeps telling me he can not give me the green light to run nor will he say not to stop running.  Oh, one last thing I would walk way more than I run.  I finished my first 50K by walking the entire race (6:29:45)...about 12:30 per mile pace.

4)Question 4 dealt with swelling...My knees never swell. I have blown out my knees and you could not tell unless you touched the knees and saw the movement of the knee caps.  Unfortunately I can not answer this question.

5. Can I ask how long it was post surgery until you were able to ride a bike to workout levels? I have answered this question...riding a bike was not helpful so during my physical therapy we got rid of this within 2 weeks.  Workouts well that took over a year with the bi-lateral PFJR (leg muscles were shot and it took almost a year to get them back to full strength).  With revisions it was extremely frustrating because the quad muscles were cut into again.  It took about 6-8 months before I felt comfortable enough to go to the gym.  (Mainly a mental block because I was scared to injure the knee and what would happen next).

Before I sign off...Look into a passive motion machine.  It is the BEST invention.  This a device you strap your leg into, set an angle (mine went up to 75 degrees), and a speed (slow is better). The machine moves your leg back and forth.  It is great to get the swelling down after your operation, if you sleep on the floor you do not get night cramps and you can sleep all night, you get rid of pain pills, and it helps with pain management after PT.  (This machine will not help you bend your knee quicker, replace PT, nor will it build muscle.)  It is great for pain management.
Take care and we want to know what is going on with both of you (Dave and RGB)...so keep posting.

Thank you and good luck,
Mr. F

[Dave33]

Thank you and good luck,
Mr. F

Wow, thanks Mr. F, you've certainly gone through quite a lot. Well, I'm apprehensive about the PJFRs being much worse than your Fulkersons, as the 2nd fulkerson I had was extremely painful (although, I must admit, I didn't keep up with the pain medication as well as I should have...) but hppefully the fact that I'm doing one at a time will make it a bit easier. I had a passive motion machine when I had the first osteotomy, as I also had a cartilage restoration procedure at the same time; I'll certainly consider getting another one for the pjfr.

A bit concerning, however, to hear about both needing to be revised after 5/6 years. Can you give me a bit more detail on what part of implant wore out, and was revised, and if there was any underlying reason?

cheers

[Mr.F]

Dave33,
Each knee was different.  It was from over use and scar tissue.  Grinding on the implant for years.  On top of this I had a tendon tear in one leg and muscle issues in the other.  Implant was not tracking properly. Even more grinding on the implant.  Each knee the revision was different. (This is why I suggested building up your leg muscles and not running so quickly.  Along with this I would find a good sports chiropractor who performs Graston muscle therapy, if not a physical therapist who does this). 

Since the revision I have made sure to stick with building up my leg muscles.  Walking, hill repeats, ankle weights, medium weights at the gym, and eventually jogging.  Currently I have taken up trail running.  Great workout for me.  (You use all the muscles in the legs and your core). 

I would also say work on your core and keep your back and glute muscles strong.  This way you are not favoring one side or leaning when walking or running.

I hope this is helpful,

Cheers mate

[Mr.F]

Hello everybody,
So sorry I have not posted in awhile.  Dealing with medical issues and work.  This is going to be a short post.
I am trying to keep positive with everything going on in my life. 
With this being said I started a new running blog.  If you would like to check it out I have included the web address:

https://takingit1stepatatime.wordpress.com

I have 2 posts so far.  I will be adding more this week.

Take care and hopefully I will connect with you through my blog,

Mr. F