New/old forum participant trying to find resources regarding PFPS

[cspike2]

I'm watching the videos right now, exactly the talk I received in his office.  I'm still left with the same questions: To what end, and how active are some of his case studies after they achieve homeostasis?  I really need to write down all of my questions before next week.  I understand the desire to avoid replacement surgery, but am I going through this program to have a comfortable "physical activity retirement"?    Back to the PATIENCE issue.   

[SuspectDevice]

So did you just take celebrex and minimize knee usage? 

Yes, but I only got onto the Celebrex after 4+yrs of terrible nagging pain and frustration.  I had already reduced knee usage dramatically (no choice) but it was the Celebrex that really helped.  Having said that, and though I don't take it anymore, I still have to be careful as I can flare things up if I overdo it.

Over the years I have only tried glucosamine/chondroitin.  I took this for quite some time so it's hard to tell if it worked or not.  Part of me feels that it did as I had long periods of minimal pain/swelling.  I tried Hyalgan twice, back when it consisted of three injections of the course of a couple weeks.  The first time I tried it, it was amazing.  My knees felt like they were in their 20's again.  The feeling only lasted about 3 weeks maybe a month as I, of course, abused the good feeling.  I think I did one or two time trials and a few mountain bike races, and did well.  I believe I had to wait 6 months before trying it again due to insurance.  The second time I tried it did nothing noticeable.  Over the years it has just been the glucosamine though.  I feel like the standing desk has helped too.  I walked to work this morning in the rain, about 2 miles, and so far no issues.

I got a standing desk too, though I keep forgetting to use it!

It's funny you make the "bone to bone" comment.  After seeing Dr. Dye, I have become hyper aware of how my knees are feeling, and that is exactly how I feel about my left knee.  Without having arthro on it to see what it looks like, I know I have a hole in the cartilage from my surgery last surgery, but it would be interesting to see how that has progressed.

Thanks for the links and info to look up.  I will take a look.

I'm watching the videos right now, exactly the talk I received in his office.  I'm still left with the same questions: To what end, and how active are some of his case studies after they achieve homeostasis?  I really need to write down all of my questions before next week.  I understand the desire to avoid replacement surgery, but am I going through this program to have a comfortable "physical activity retirement"?    Back to the PATIENCE issue.

I can't say to what end.  As I type this I've flared my knees a bit by overdoing it in the gym a few days ago - probably the worst flare I've had in about 6mths, so I'm still not entirely out of the woods.  I doubt I'll ever do long-course triathlon again, and even my future in sprint races (no more than an hour) is iffy.  The most important thing for me is to have learned how to control the really bad constant pain/burning/stiffness and to have realised it is not so much a cartilage/bone issue as an inflammation/synovial/perhaps synovial fluid issue.  And I'm back to doing day to day tasks with little problem.

For me. giving up being obsessed with triathlon was really hard.  It was a huge part of my identify, but I'm over it now.  I view exercise now as more about being as healthy as possible as I age, rather than as training for competition.  And I've discovered MTBs (which I'd never have done if still obsessed with tris) and they are so much more fun that road cycling.....though I never crashed my road or TT bikes, but have already busted one helmet on the MTB single track - head vs rock 

[dsamp15]

Suspect Device,

I agree with what you say about it being an inflammation issue as opposed to a cartilage/bone issue. I would swear in my knee based on the pain that I have that it's bone on bone, but X-Rays show no joint narrowing in either compartment. I feel like Dr. Dye's message about homeostasis is right on the money, the question is how to control the inflammation while still trying to go about daily life.

[dal_knee]

Wouldn't PRP help speed the process since it's an effective anti inflammatory?  Maybe get a couple PRPs while gently working on bio-mechanics, cross training  and limiting physical activity?

[cspike2]

One day I will figure out the quote function.

@SuspectDevice  "For me. giving up being obsessed with triathlon was really hard.  It was a huge part of my identify, but I'm over it now.  I view exercise now as more about being as healthy as possible as I age, rather than as training for competition.  And I've discovered MTBs (which I'd never have done if still obsessed with tris) and they are so much more fun that road cycling.....though I never crashed my road or TT bikes, but have already busted one helmet on the MTB single track - head vs rock  "

Yes, cycling is a big part of my identity.  I already sold my mtb, and that was hard as I really enjoy mountain biking; it also gave me a 3 hour escape from my in-laws when we visited.  If I can ride again, I will get to buy a new mtb.       Enjoy it.  I am constantly reminded about my former identity as people around me go for rides during their lunch break.  I used to love the lunch race rides. 

So I had my follow up with Dr. Dye today and had a good discussion.  I have been making notes in a journal to track my experiences.  He said it sounds like I am on the right track, and to give it another couple months before having another bone scan.  I am off the NSAIDS, but still taking the calcitonin.  I asked about the calcitonin just to understand what it is doing, and it apparently prevents the osteoclasts from removing bone cells when they are inflamed and in a state of repair, but the osteoblasts continue to lay down cells.  Makes sense.  Recommended 3 months for taking the calcitonin, which is a nasal spray.  I forgot to ask him if he is using any kind of maintenance plan to be pain free for so long, but I imagine he would just tell me he found his envelope of activity; my bone scans were far worse than his though.  I also asked about some of his case studies from the youtube presentations linked, and what level of activity some or all of them returned to. He said obviously not back to the same level/intensity as when they were in their 20's, but many of them were able to become quite active again.  PATIENCE!

I am swimming about 4 days a week, just free style.  I can kick quite vigorously while sprinting, but I have avoided kicking drills with a kick board.  Just in the last couple of weeks I have noticed my knee feeling better.  I've done this for years, alternating activity with periods of inactivity due to pain, but the pain this time around was the most debilitating by far, which is why I went to see Dr. Dye.  I did go for a hilly hike yesterday, but really babied my knee on the down hill.  Thankfully it was a short hike.

I asked him about integrating exercise, obviously at a later date than now.  He said down the road to work on an exercise bike, gentle "down-the-country-road" strolls, building up to 30 minutes, 3 times a week.  Ride a bike!  I can do that, but he did emphasize the country road statement.    Time to rediscover my envelope of activity I guess.

I asked about PRP as a way to help inflammation.  His exact words included "BS".  He agrees it works for solid structures (tendon), to bathe them in cells to aid in repair, but not to inject it into a joint. I figured something like that was coming.

So for now I am to keep doing what I am doing.  The Doc says he is more of a psychiatrist than on OS.  His method makes sense to me, and it seems the industry is starting to agree.  My x-ray and MRI scans over the years have barely changed, and this is since 1997, but my pain has increased.  He told me that I now must appease the gods, and give my knees time to heal.   

[Brandon123]

So I had my follow up with Dr. Dye today and had a good discussion.  I have been making notes in a journal to track my experiences.  He said it sounds like I am on the right track, and to give it another couple months before having another bone scan. 

Thanks for the report from your latest meeting with Dr. Dye, always interesting to hear about! One thing I never understood about Dr. Dye's approach and his treatment regime is the bone scan? I have never heard of anybody else doing it, what is the purpose and what can the bone scan tell about the knee problem? Can anybody explain this thing in simple terms?

[cspike2]

The bone scan shows when bone removal and repair is in an over active state, which indicates a non-homeostatic knee.  All bones have a normal rate or removal and repair by osteoclasts (removal) and osteoblasts (repair).  His analogy is the building of a brick wall.  The osteoclasts are removing bricks while the blasts are replacing new bricks.  You receive an injection containing a small radioactive tracer attached to an element that is rapidly absorbed during the bone regrowth/repair process.  The areas in the knee that were in over active repair mode were dark black, indicating that this process is out of normal control, or not in a state of homeostasis; bones that are in a normal state or regrowth/repair are a grey color.  Based on his research or sensory mapping the structures of the knee, and showing that cartilage does not have pain receptors, he is linking this over active state of bone repair to pain and inflammation in the knee.  Returning the knee to a normal rate of bone repair, homeostasis, eliminates the pain.  His theory is to treat the knee as an environment and not necessarily from a structural perspective.  Most people have Chondromalacia of the patella as they get older simply from the activities we do throughout our life, but this kind of wear related structural damage should not matter as long as the knee is in homeostasis. 

Does that make a little more sense?  You can also search the internet for "using bone scans to diagnose PFPS".  It makes sense to me as a biologist.  I'm also willing to try anything to avoid more surgeries or replacement, especially something this simple. 

[Brandon123]

The bone scan shows when bone removal and repair is in an over active state, which indicates a non-homeostatic knee.  All bones have a normal rate or removal and repair by osteoclasts (removal) and osteoblasts (repair).  His analogy is the building of a brick wall.  The osteoclasts are removing bricks while the blasts are replacing new bricks.  You receive an injection containing a small radioactive tracer attached to an element that is rapidly absorbed during the bone regrowth/repair process.  The areas in the knee that were in over active repair mode were dark black, indicating that this process is out of normal control, or not in a state of homeostasis; bones that are in a normal state or regrowth/repair are a grey color.  Based on his research or sensory mapping the structures of the knee, and showing that cartilage does not have pain receptors, he is linking this over active state of bone repair to pain and inflammation in the knee.  Returning the knee to a normal rate of bone repair, homeostasis, eliminates the pain.  His theory is to treat the knee as an environment and not necessarily from a structural perspective.  Most people have Chondromalacia of the patella as they get older simply from the activities we do throughout our life, but this kind of wear related structural damage should not matter as long as the knee is in homeostasis. 

Does that make a little more sense?  You can also search the internet for "using bone scans to diagnose PFPS".  It makes sense to me as a biologist.  I'm also willing to try anything to avoid more surgeries or replacement, especially something this simple.

Thank you cspike2 for the thorough but yet simple and understandable explanation of the meaning of the bone scan procedure for knee problems! The concept makes sense and would explain why somebody with advanced chondromalacia can run marathons while others become more or less disabled from a similar structural damage. I have met 1 or 2 OS that have said: 'My cartilage is worse than yours, and I'm running 5-10 miles every day'.

I do wonder, of course, whether e.g. advanced chondromalacia for some can throw the knee 'out of homeostasis' and keep it there. That is, making the envelope of function so small you cannot even live your daily (careful) life without going out of homostasis. Certainly feels that way for me. In other word, can everybody find their way back to homeostasis, or do certain types of cartilage wear/damage just require surgery of some sort to 'fix the problem'? This is of course a question for Dr. Dye and other OS, but I am just thinking loud

[SuspectDevice]

The bone scan shows when bone removal and repair is in an over active state, which indicates a non-homeostatic knee.  All bones have a normal rate or removal and repair by osteoclasts (removal) and osteoblasts (repair).  His analogy is the building of a brick wall.  The osteoclasts are removing bricks while the blasts are replacing new bricks.  You receive an injection containing a small radioactive tracer attached to an element that is rapidly absorbed during the bone regrowth/repair process.  The areas in the knee that were in over active repair mode were dark black, indicating that this process is out of normal control, or not in a state of homeostasis; bones that are in a normal state or regrowth/repair are a grey color.  Based on his research or sensory mapping the structures of the knee, and showing that cartilage does not have pain receptors, he is linking this over active state of bone repair to pain and inflammation in the knee.  Returning the knee to a normal rate of bone repair, homeostasis, eliminates the pain.  His theory is to treat the knee as an environment and not necessarily from a structural perspective.  Most people have Chondromalacia of the patella as they get older simply from the activities we do throughout our life, but this kind of wear related structural damage should not matter as long as the knee is in homeostasis. 

Does that make a little more sense?  You can also search the internet for "using bone scans to diagnose PFPS".  It makes sense to me as a biologist.  I'm also willing to try anything to avoid more surgeries or replacement, especially something this simple.

Thank you cspike2 for the thorough but yet simple and understandable explanation of the meaning of the bone scan procedure for knee problems! The concept makes sense and would explain why somebody with advanced chondromalacia can run marathons while others become more or less disabled from a similar structural damage. I have met 1 or 2 OS that have said: 'My cartilage is worse than yours, and I'm running 5-10 miles every day'.

I do wonder, of course, whether e.g. advanced chondromalacia for some can throw the knee 'out of homeostasis' and keep it there. That is, making the envelope of function so small you cannot even live your daily (careful) life without going out of homostasis. Certainly feels that way for me. In other word, can everybody find their way back to homeostasis, or do certain types of cartilage wear/damage just require surgery of some sort to 'fix the problem'? This is of course a question for Dr. Dye and other OS, but I am just thinking loud

This is a good discussion, and we are really getting down to some key issues which I have pondered endlessly.

I think many things can throw your knees out of homeostasis, and patella chondro is probably one of them.  But the cure to get back into homeostasis which includes massive activity modification will also assist healing chondro.  The cartilage on the back of the kneecap does have the capacity to heal, albeit very slowly and it takes care.  My thinking is that patella chondro is one type of cartilage damage where surgery should never be the answer - or at least the very very very last resort.

As for some cartilage issues requiring surgery, the meniscus is the obvious one.  In my case I had a very bad tear and the loose flap of meniscus was both chaffing the cartilage on the end of my femur and locking the joint.  With much care & patience, perhaps it would have healed itself (my GP to his credit suggested I try that first but I was too impatient and went off to the OS), but I doubt it, and surgery was probably necessary.  Another knee specialist saw the MRI of my tear and also concluded no option but surgery. 

But there is growing evidence that many meniscus tears will settle without surgery and with proper care.  And if there are any PTs/medicos reading, PROPER CARE DOES NOT MEAN SINGLE LEG SQUATS!  In fact single leg squats should not be used for any knee pain problems IMO.  They are far too much load for fragile knees.

The chondro on my right knee was so bad that my OS was surprised I could do tris, and it did flare from time to time, but nothing like the disability associated with 4+ yrs of full blown PFPS.  So I think if you do the right things, chondro will not lead to loss of homeostasis, and even if you do end up there, you can find your way back, though it may be a long frustrating road like mine was.

[SuspectDevice]

Suspect Device,

I agree with what you say about it being an inflammation issue as opposed to a cartilage/bone issue. I would swear in my knee based on the pain that I have that it's bone on bone, but X-Rays show no joint narrowing in either compartment. I feel like Dr. Dye's message about homeostasis is right on the money, the question is how to control the inflammation while still trying to go about daily life.

The only way for me to control inflammation after 4yrs of trying many many things was Celebrex for 4-5mths. If I'd done a Richard Bedard and quit work and massively controlled my daily activities, perhaps I could have fixed it that way, but that route was not possible for me.

A little icing and the use of a TENS machine were also helpful.

Wouldn't PRP help speed the process since it's an effective anti inflammatory?  Maybe get a couple PRPs while gently working on bio-mechanics, cross training  and limiting physical activity?

I had PRP and it did not work for me for more than a few days after each injection.

[Brandon123]

The bone scan shows when bone removal and repair is in an over active state, which indicates a non-homeostatic knee.  All bones have a normal rate or removal and repair by osteoclasts (removal) and osteoblasts (repair).  His analogy is the building of a brick wall.  The osteoclasts are removing bricks while the blasts are replacing new bricks.  You receive an injection containing a small radioactive tracer attached to an element that is rapidly absorbed during the bone regrowth/repair process.  The areas in the knee that were in over active repair mode were dark black, indicating that this process is out of normal control, or not in a state of homeostasis; bones that are in a normal state or regrowth/repair are a grey color.  Based on his research or sensory mapping the structures of the knee, and showing that cartilage does not have pain receptors, he is linking this over active state of bone repair to pain and inflammation in the knee.  Returning the knee to a normal rate of bone repair, homeostasis, eliminates the pain.  His theory is to treat the knee as an environment and not necessarily from a structural perspective.  Most people have Chondromalacia of the patella as they get older simply from the activities we do throughout our life, but this kind of wear related structural damage should not matter as long as the knee is in homeostasis. 

Does that make a little more sense?  You can also search the internet for "using bone scans to diagnose PFPS".  It makes sense to me as a biologist.  I'm also willing to try anything to avoid more surgeries or replacement, especially something this simple.

Thank you cspike2 for the thorough but yet simple and understandable explanation of the meaning of the bone scan procedure for knee problems! The concept makes sense and would explain why somebody with advanced chondromalacia can run marathons while others become more or less disabled from a similar structural damage. I have met 1 or 2 OS that have said: 'My cartilage is worse than yours, and I'm running 5-10 miles every day'.

I do wonder, of course, whether e.g. advanced chondromalacia for some can throw the knee 'out of homeostasis' and keep it there. That is, making the envelope of function so small you cannot even live your daily (careful) life without going out of homostasis. Certainly feels that way for me. In other word, can everybody find their way back to homeostasis, or do certain types of cartilage wear/damage just require surgery of some sort to 'fix the problem'? This is of course a question for Dr. Dye and other OS, but I am just thinking loud

This is a good discussion, and we are really getting down to some key issues which I have pondered endlessly.

I think many things can throw your knees out of homeostasis, and patella chondro is probably one of them.  But the cure to get back into homeostasis which includes massive activity modification will also assist healing chondro.  The cartilage on the back of the kneecap does have the capacity to heal, albeit very slowly and it takes care.  My thinking is that patella chondro is one type of cartilage damage where surgery should never be the answer - or at least the very very very last resort.

As for some cartilage issues requiring surgery, the meniscus is the obvious one.  In my case I had a very bad tear and the loose flap of meniscus was both chaffing the cartilage on the end of my femur and locking the joint.  With much care & patience, perhaps it would have healed itself (my GP to his credit suggested I try that first but I was too impatient and went off to the OS), but I doubt it, and surgery was probably necessary.  Another knee specialist saw the MRI of my tear and also concluded no option but surgery. 

But there is growing evidence that many meniscus tears will settle without surgery and with proper care.  And if there are any PTs/medicos reading, PROPER CARE DOES NOT MEAN SINGLE LEG SQUATS!  In fact single leg squats should not be used for any knee pain problems IMO.  They are far too much load for fragile knees.

The chondro on my right knee was so bad that my OS was surprised I could do tris, and it did flare from time to time, but nothing like the disability associated with 4+ yrs of full blown PFPS.  So I think if you do the right things, chondro will not lead to loss of homeostasis, and even if you do end up there, you can find your way back, though it may be a long frustrating road like mine was.

Good discussion indeed, helps me sort out a lot of confusing around all this

I guess the really difficult thing is to know how much time to give the recovery/return to homeostasis, before resorting to more drastic measures such as surgery. I mean, the Dr. Dye approach can evidently take up to 5-10 years, and that is quite some time to suffer/lose your normal life if the knee is really painful/weak/sensitive/inflamed etc. What if after 5 years of super reduced activity and everything, you realize that this thing is not going away, and still have to go into surgery to fix some structural damage that just had to be fixed for the knee to return to homeostasis? I would deeply regret that I didn't have the surgery sooner. 

But then again, there are no really good surgeries or quick fixes for a patella cartilage problem like mine, so rushing into surgeries and stuff can be a huge mistake as well. Especially for younger people who might need even more surgeries in the future. I wish I could do a Richard Bedard and drop everything except recovering my knee for 1-2 years, but it is not possible in my case either

Everybody tells me: "you got to get this fixed", "the doctors got to do something", "why is nothing happening" etc., "how can it take this long to heal". People have a hard time understanding why I just cannot go into a quick surgery and get my knee fixed, because they see sport stars and other people with more fixable injures have surgery and recover all the time. It is especially difficult to explain to employers, colleagues etc., why I am not getting this "fixed" ASAP. 

To sum up, I think it all boils down to the question of patience. It is a tough mental game indeed to stay the course of trying to recover without actively taking action all the time in terms of invasive treatments, surgeries etc. So I guess in the end it is all about patience (as already discussed in previous posts), and how much of it you have

[reflex_nl]

@Brandon123

Your fully right on this and exactly expressed my concerns on patella damage as well...

[SuspectDevice]

Good discussion indeed, helps me sort out a lot of confusing around all this

I guess the really difficult thing is to know how much time to give the recovery/return to homeostasis, before resorting to more drastic measures such as surgery. I mean, the Dr. Dye approach can evidently take up to 5-10 years, and that is quite some time to suffer/lose your normal life if the knee is really painful/weak/sensitive/inflamed etc. What if after 5 years of super reduced activity and everything, you realize that this thing is not going away, and still have to go into surgery to fix some structural damage that just had to be fixed for the knee to return to homeostasis? I would deeply regret that I didn't have the surgery sooner. 

But then again, there are no really good surgeries or quick fixes for a patella cartilage problem like mine, so rushing into surgeries and stuff can be a huge mistake as well. Especially for younger people who might need even more surgeries in the future. I wish I could do a Richard Bedard and drop everything except recovering my knee for 1-2 years, but it is not possible in my case either

Everybody tells me: "you got to get this fixed", "the doctors got to do something", "why is nothing happening" etc., "how can it take this long to heal". People have a hard time understanding why I just cannot go into a quick surgery and get my knee fixed, because they see sport stars and other people with more fixable injures have surgery and recover all the time. It is especially difficult to explain to employers, colleagues etc., why I am not getting this "fixed" ASAP. 

To sum up, I think it all boils down to the question of patience. It is a tough mental game indeed to stay the course of trying to recover without actively taking action all the time in terms of invasive treatments, surgeries etc. So I guess in the end it is all about patience (as already discussed in previous posts), and how much of it you have

Spot on Brandon.  And mentally it is very tough.  I needed pharmaceutical intervention for that side of it too (psychologist did not work for me).

However, I think if I'd got on Celebrex early along with massive knee load reduction I might have got on top of it in one year instead of five!

[Brandon123]

@Brandon123

Your fully right on this and exactly expressed my concerns on patella damage as well...

Patella cartilage damage is difficult indeed...how are you doing now, reflex? Any improvements in recent weeks?

[Brandon123]

Spot on Brandon.  And mentally it is very tough.  I needed pharmaceutical intervention for that side of it too (psychologist did not work for me).

I completely understand, I haven't sought out any kind of help for the mental part of the struggle, but sometimes feel I should. 

However, I think if I'd got on Celebrex early along with massive knee load reduction I might have got on top of it in one year instead of five!

I soon have a vacation coming up and I will really try to reduce the knee load for 3 weeks or so (+ as much anti-inflammatory I can do). Not a fun way to spend your holidays compared to traveling and such things I used to do, but worth the sacrifice if it helps. Even if it cannot eliminate the inflammation completely, such an experiment could hopefully give an indication as to whether or not my knee is responding to a Dr.Dye/Richard Bedard approach.