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Author Topic: Has anyone ever fully recovered from chronic PFPS  (Read 1614 times)

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Offline react2resist

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Has anyone ever fully recovered from chronic PFPS
« on: June 18, 2021, 03:55:30 PM »
Hello all,

I'm new to the forum!

I was wondering if there is any hope for getting back to a life where it's possible to exercise freely without fear of two weeks of burning and knee pain following strenuous activity? I have suffered badly for around a year and beginning to grow weary of the pain.

about me: 29 years old

Knee pain story: Ran/ cycled a lot in my early 20's with no pain. Ran a marathon on a knee injury (mistake) in 2019. Never ran long distance after that but could still cycle/ work out as usual.

Come September 2020 my knees dropped off a cliff. It's now painful to walk and if my knees flare up, the pain courses through my knee caps/ quads/ hamstrings for around 1 week.

I've seen multiple specialists, had 2 MRI's and 2 rounds of hyaluronic acid injections. The MRI's show a tiny amount of wear on my cartilage, but the doctors say its very common and nothing that has not been treated successfully 100 times in the past.

I have never been able to get my strength up to a point where the pain has subsided.

Has anyone had  a similar level of pain for this amount of time and been able to recover fully?

Offline vickster

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Re: Has anyone ever fully recovered from chronic PFPS
« Reply #1 on: June 18, 2021, 03:59:27 PM »
A poster, SuspectDevice  has had success after a long PFPS journey, his many posts can be found here
https://www.kneeguru.co.uk/KNEEtalk/index.php?action=profile;area=showposts;u=40511
Came off bike onto concrete 9/9/09 (lat meniscus, lat condyle defect)
LK scopes 8/2/10 & 16/12/10
RK scope 5/2/15 (menisectomy, Hoffa’s fat pad trim)
LK scope 10.1.19 medial meniscectomy, trochlea MFX
LK scope 19.4.21 MFX to both condyles & trochlea, patella cartilage shaved, viscoseal, depo-medrone

Offline react2resist

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Re: Has anyone ever fully recovered from chronic PFPS
« Reply #2 on: June 18, 2021, 05:30:36 PM »
A poster, SuspectDevice  has had success after a long PFPS journey, his many posts can be found here
https://www.kneeguru.co.uk/KNEEtalk/index.php?action=profile;area=showposts;u=40511

Thank you! that was inspiring to read!   :D

Offline SuspectDevice

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Re: Has anyone ever fully recovered from chronic PFPS
« Reply #3 on: June 29, 2021, 10:48:24 AM »
Yes, sounds similar to my situation, though I did not really get pain in the quads & hammies.  It was mostly under the front of the knee, under the kneecaps, but did move around the knee a bit, mostly medial.

IMO the burning feeling is the key - it suggests the classic Dr Dye loss of tissue homeostatis, which is a complete mongrel to get rid of.  But it can be done.

I got my knees back to 80-90% of 'normal' and am back into regular training and the odd short triathlon.  But I do think the long-term inflammation (5+ yrs) had some negative effects on my cartilage, so I have to be careful and train smarter (e.g. not push my knees like I used to).
L Medial menisectomy 2012
PFPS both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 90+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2021 - ride 3x/week, swim 2x/week, gym 2x/week, short runs 2x/week, back to short races

Offline react2resist

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Re: Has anyone ever fully recovered from chronic PFPS
« Reply #4 on: July 14, 2021, 04:33:26 PM »
Yes, sounds similar to my situation, though I did not really get pain in the quads & hammies.  It was mostly under the front of the knee, under the kneecaps, but did move around the knee a bit, mostly medial.

IMO the burning feeling is the key - it suggests the classic Dr Dye loss of tissue homeostatis, which is a complete mongrel to get rid of.  But it can be done.

I got my knees back to 80-90% of 'normal' and am back into regular training and the odd short triathlon.  But I do think the long-term inflammation (5+ yrs) had some negative effects on my cartilage, so I have to be careful and train smarter (e.g. not push my knees like I used to).


Thanks for getting back to me. Since reading your blog post I've been looking heavily into Doctor Dyes and Doug Kelseys work as well as reading 'saving my knees'.

for the past 2 weeks i've been trying Doug Kelseys method. plenty of joint movement (rolling feet back and forth whilst sitting) and 5 mins everyday on a bike with 0 resistance.

I think my knees are starting to feel a bit better, but probably too early to tell and I am pretty desperate to feel any relief so it may be in my head at this stage.

I saw on your  the other thread you tool  1 celebrex for 6 months.  maybe I'll give that a shot to  see if that helps long time  whilst i'm trying to calm my knees down.


One more question I have for you,  you mention dr Dyes work but other than the presentations and  one research piece  I have not been able to find anymore from him. Do you have any suggestions?

Offline SuspectDevice

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Re: Has anyone ever fully recovered from chronic PFPS
« Reply #5 on: July 18, 2021, 11:48:03 PM »


One more question I have for you,  you mention dr Dyes work but other than the presentations and  one research piece  I have not been able to find anymore from him. Do you have any suggestions?

No, I only found 2 videos where he was doing presentations at orthopedic conferences and one research paper.  But also summaries of his ideas in others writings (e.g. Bedard).

But I did not need any more to understand his reasoning regarding loss of knee tissue homeostasis, the potential symptoms (I regard burning with no underlying structural issues as a key clue), and how to cure it.
My experiences/symptoms were so similar to Bedards, it was uncanny, so I figured there was a very high chance I had the problems Dr Dye describes.
L Medial menisectomy 2012
PFPS both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 90+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2021 - ride 3x/week, swim 2x/week, gym 2x/week, short runs 2x/week, back to short races

Offline react2resist

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Re: Has anyone ever fully recovered from chronic PFPS
« Reply #6 on: July 27, 2021, 04:07:04 PM »


One more question I have for you,  you mention dr Dyes work but other than the presentations and  one research piece  I have not been able to find anymore from him. Do you have any suggestions?

No, I only found 2 videos where he was doing presentations at orthopedic conferences and one research paper.  But also summaries of his ideas in others writings (e.g. Bedard).

But I did not need any more to understand his reasoning regarding loss of knee tissue homeostasis, the potential symptoms (I regard burning with no underlying structural issues as a key clue), and how to cure it.
My experiences/symptoms were so similar to Bedards, it was uncanny, so I figured there was a very high chance I had the problems Dr Dye describes.


Thanks again. one more question if you don't mind. During your recovery, if an exercise caused pain for a while after you did it, would you stop doing that exercise completely? Did you even bother with any exercises (strengthening) other than walking?


Obviously its very tough to find anything that I can do (even walking) that doesn't end in knee pain.

Offline react2resist

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Re: Has anyone ever fully recovered from chronic PFPS
« Reply #7 on: July 27, 2021, 04:18:12 PM »


One more question I have for you,  you mention dr Dyes work but other than the presentations and  one research piece  I have not been able to find anymore from him. Do you have any suggestions?

No, I only found 2 videos where he was doing presentations at orthopedic conferences and one research paper.  But also summaries of his ideas in others writings (e.g. Bedard).

But I did not need any more to understand his reasoning regarding loss of knee tissue homeostasis, the potential symptoms (I regard burning with no underlying structural issues as a key clue), and how to cure it.
My experiences/symptoms were so similar to Bedards, it was uncanny, so I figured there was a very high chance I had the problems Dr Dye describes.

also your link to your blog:


https://forums.transitions.org.au/topic/68825-stay-that-knife-surgeon-knee-pain/?tab=comments#comment-1149079

no longer works (for me anyway). which is a shame!

Offline SuspectDevice

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Re: Has anyone ever fully recovered from chronic PFPS
« Reply #8 on: July 28, 2021, 11:47:24 AM »


One more question I have for you,  you mention dr Dyes work but other than the presentations and  one research piece  I have not been able to find anymore from him. Do you have any suggestions?

No, I only found 2 videos where he was doing presentations at orthopedic conferences and one research paper.  But also summaries of his ideas in others writings (e.g. Bedard).

But I did not need any more to understand his reasoning regarding loss of knee tissue homeostasis, the potential symptoms (I regard burning with no underlying structural issues as a key clue), and how to cure it.
My experiences/symptoms were so similar to Bedards, it was uncanny, so I figured there was a very high chance I had the problems Dr Dye describes.

also your link to your blog:


https://forums.transitions.org.au/topic/68825-stay-that-knife-surgeon-knee-pain/?tab=comments#comment-1149079

no longer works (for me anyway). which is a shame!

Yes, a sad story there.  That is not my blog, but a very detailed post I started about my knee journey on a triathlon forum.  Sadly, the forum owner took his own life, and someone else is now trying to reactivate it. But it could take a while.
L Medial menisectomy 2012
PFPS both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 90+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2021 - ride 3x/week, swim 2x/week, gym 2x/week, short runs 2x/week, back to short races

Offline Iris123

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Re: Has anyone ever fully recovered from chronic PFPS
« Reply #9 on: July 28, 2021, 01:55:18 PM »
Yes, sounds similar to my situation, though I did not really get pain in the quads & hammies.  It was mostly under the front of the knee, under the kneecaps, but did move around the knee a bit, mostly medial.

IMO the burning feeling is the key - it suggests the classic Dr Dye loss of tissue homeostatis, which is a complete mongrel to get rid of.  But it can be done.

I got my knees back to 80-90% of 'normal' and am back into regular training and the odd short triathlon.  But I do think the long-term inflammation (5+ yrs) had some negative effects on my cartilage, so I have to be careful and train smarter (e.g. not push my knees like I used to).
Hi
I read your old posts and wanted to ask you some information about .

I read that you talk about 'chronic synovitis': how was it diagnosed?
is synovitis visible in instrumental examinations such as MRI or x-rays?

I read that you say that your cartilage was damaged but then it improved (or healed): how is this possible? I thought that cartilage does not have regenerative abilities, maybe you have done special care?

thank you!
« Last Edit: July 28, 2021, 01:59:00 PM by Iris123 »

Offline SuspectDevice

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Re: Has anyone ever fully recovered from chronic PFPS
« Reply #10 on: July 29, 2021, 07:26:57 AM »

Hi
I read your old posts and wanted to ask you some information about .

I read that you talk about 'chronic synovitis': how was it diagnosed?
is synovitis visible in instrumental examinations such as MRI or x-rays?

I read that you say that your cartilage was damaged but then it improved (or healed): how is this possible? I thought that cartilage does not have regenerative abilities, maybe you have done special care?

thank you!

I self-diagnosed chronic synovitis after reading Dr Dye and other papers.  I did ask one Sports Dr (who was supposed to be a knee 'expert' if I had synovitis.  He just prodded my knee and said no.  But I think he was wrong.  For me, the burning, red & hot kneecaps was an indicator of synovitis, and the fact that Celebrex had such a positive effect reinforces my view on that.

My understanding is that chronic synovitis or other chronic inflammation of knee structures can only be detected by heat map imaging (I forget the proper name).  Dr Dyes videos show this technique.  I never had it done though.

Cartilage definitely does have regenerative abilities!  Read Richard Bedards book where he cites medical papers which prove it, one of the first done here in Australia (Tasmania) on rabbits.  The poor little buggers purposely had their knee cartilage damaged.  Some were just left to do their thing, others were attached to a machine which very gently mobilised the knees.  Then all the poor little buggers were killed and their knees examined.  Those on the mobilisation treatment had significant healing.  Similar studies have been done in humans, tracking the changes in their kneecap cartilage (i.e. chondromalacia patella studies).

BUT, it depends where the cartilage is and how much blood supply it has.  Some areas of the medial and lateral meniscus (these are cartilage) have very poor blood supply, esp. in older people so won't heal, or heal incredible slowly.  Other areas can heal - which is why surgeons will often sew a torn meniscus back together in young people, rather than cutting out the damaged section.  I had a damaged piece cut out (the start of my dual knee issues, but I think they were coming anyway despite the torn meniscus) so that will never heal fully.  But has it re-grown a bit? I don't know, would need an MRI to see.  But it feels ok so not I'm going there.

The cartilage on the back of the kneecaps (a big problem area for me since about age 14) and on the ends of the two leg bones can also heal, given the right conditions.  The cartilage on the back of the kneecap seems to have the best chance of healing from the research I read.

Healing cartilage is difficult though.  As I said, poor or no blood supply.  Some areas only get their 'nutrition' through synovial fluid, which only happens by movement.  But too much movement/stress can increase the damage/pain.  Finding the right level of movement is the trick, but it is hard.  Lots of trial and error.

The other thing which helped me once I got my knees back to a slightly better level (through Celebrex and gentle walking) was strengthening supporting muscles to take pressure off my knees - glutes, hammies, front and side and back core.

My conclusion is Orthopedic surgeons are way too pessimistic about knee healing, and many just want to cut you open.  They seem to have no knowledge (or conveniently ignore) the healing possibilities.

At the end of my nightmare, I was talking to another runner in our gym who had torn his meniscus (MRI confirmed it).  I suggested he wait at least 12mths before jumping into surgery, forget running, told him about the exercises I did etc.  He did this and Hey Presto - meniscus healed, he's running again.
L Medial menisectomy 2012
PFPS both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 90+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2021 - ride 3x/week, swim 2x/week, gym 2x/week, short runs 2x/week, back to short races

Offline Iris123

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Re: Has anyone ever fully recovered from chronic PFPS
« Reply #11 on: July 29, 2021, 09:00:40 AM »




I self-diagnosed chronic synovitis after reading Dr Dye and other papers.  I did ask one Sports Dr (who was supposed to be a knee 'expert' if I had synovitis.  He just prodded my knee and said no.  But I think he was wrong.  For me, the burning, red & hot kneecaps was an indicator of synovitis, and the fact that Celebrex had such a positive effect reinforces my view on that.

My understanding is that chronic synovitis or other chronic inflammation of knee structures can only be detected by heat map imaging (I forget the proper name).  Dr Dyes videos show this technique.  I never had it done though.

Cartilage definitely does have regenerative abilities!  Read Richard Bedards book where he cites medical papers which prove it, one of the first done here in Australia (Tasmania) on rabbits.  The poor little buggers purposely had their knee cartilage damaged.  Some were just left to do their thing, others were attached to a machine which very gently mobilised the knees.  Then all the poor little buggers were killed and their knees examined.  Those on the mobilisation treatment had significant healing.  Similar studies have been done in humans, tracking the changes in their kneecap cartilage (i.e. chondromalacia patella studies).

BUT, it depends where the cartilage is and how much blood supply it has.  Some areas of the medial and lateral meniscus (these are cartilage) have very poor blood supply, esp. in older people so won't heal, or heal incredible slowly.  Other areas can heal - which is why surgeons will often sew a torn meniscus back together in young people, rather than cutting out the damaged section.  I had a damaged piece cut out (the start of my dual knee issues, but I think they were coming anyway despite the torn meniscus) so that will never heal fully.  But has it re-grown a bit? I don't know, would need an MRI to see.  But it feels ok so not I'm going there.

The cartilage on the back of the kneecaps (a big problem area for me since about age 14) and on the ends of the two leg bones can also heal, given the right conditions.  The cartilage on the back of the kneecap seems to have the best chance of healing from the research I read.

Healing cartilage is difficult though.  As I said, poor or no blood supply.  Some areas only get their 'nutrition' through synovial fluid, which only happens by movement.  But too much movement/stress can increase the damage/pain.  Finding the right level of movement is the trick, but it is hard.  Lots of trial and error.

The other thing which helped me once I got my knees back to a slightly better level (through Celebrex and gentle walking) was strengthening supporting muscles to take pressure off my knees - glutes, hammies, front and side and back core.

My conclusion is Orthopedic surgeons are way too pessimistic about knee healing, and many just want to cut you open.  They seem to have no knowledge (or conveniently ignore) the healing possibilities.

At the end of my nightmare, I was talking to another runner in our gym who had torn his meniscus (MRI confirmed it).  I suggested he wait at least 12mths before jumping into surgery, forget running, told him about the exercises I did etc.  He did this and Hey Presto - meniscus healed, he's running again.

What you write is very interesting.

I think I developed synovitis after surgery, which was done to me by mistake The surgeon accidentally cut the external alar ligament instead of the tibial ileus band  and since then the knee is unstable and the patella swings inward.
As far as I know the synovium is used to regulate the synovial fluid in the joint, so if there is a problem the fluid is produced in excess, I understand it because the excess fluid is located right on the inside of my knee where the patella slams: the body is trying to contain the friction with liquid.



I agree with you that it is better to avoid going back to the operating room as much as possible, but in my case I think I have no other choice, at least I think I cannot stick with this misalignment as it prevents me from walk. I use tape to pull the kneecap outwards, this helps a little but is not enough.
Who knows how long it will take to regain homeostasis after surgery and maybe I'll never get it, but I don't think I have any other choice.

As for cartilage, I did not know that autologous regeneration is possible, I know of techniques such as prp or lipogems, but in the end they are more expensive palliatives than hyaluronic acid.

a question: for the cartilage behind the patella is a debriment advisable? or is it worse?
« Last Edit: July 29, 2021, 09:44:13 AM by Iris123 »

Offline react2resist

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Re: Has anyone ever fully recovered from chronic PFPS
« Reply #12 on: July 30, 2021, 10:38:50 AM »

Hi
I read your old posts and wanted to ask you some information about .

I read that you talk about 'chronic synovitis': how was it diagnosed?
is synovitis visible in instrumental examinations such as MRI or x-rays?

I read that you say that your cartilage was damaged but then it improved (or healed): how is this possible? I thought that cartilage does not have regenerative abilities, maybe you have done special care?

thank you!

I self-diagnosed chronic synovitis after reading Dr Dye and other papers.  I did ask one Sports Dr (who was supposed to be a knee 'expert' if I had synovitis.  He just prodded my knee and said no.  But I think he was wrong.  For me, the burning, red & hot kneecaps was an indicator of synovitis, and the fact that Celebrex had such a positive effect reinforces my view on that.

My understanding is that chronic synovitis or other chronic inflammation of knee structures can only be detected by heat map imaging (I forget the proper name).  Dr Dyes videos show this technique.  I never had it done though.

Cartilage definitely does have regenerative abilities!  Read Richard Bedards book where he cites medical papers which prove it, one of the first done here in Australia (Tasmania) on rabbits.  The poor little buggers purposely had their knee cartilage damaged.  Some were just left to do their thing, others were attached to a machine which very gently mobilised the knees.  Then all the poor little buggers were killed and their knees examined.  Those on the mobilisation treatment had significant healing.  Similar studies have been done in humans, tracking the changes in their kneecap cartilage (i.e. chondromalacia patella studies).

BUT, it depends where the cartilage is and how much blood supply it has.  Some areas of the medial and lateral meniscus (these are cartilage) have very poor blood supply, esp. in older people so won't heal, or heal incredible slowly.  Other areas can heal - which is why surgeons will often sew a torn meniscus back together in young people, rather than cutting out the damaged section.  I had a damaged piece cut out (the start of my dual knee issues, but I think they were coming anyway despite the torn meniscus) so that will never heal fully.  But has it re-grown a bit? I don't know, would need an MRI to see.  But it feels ok so not I'm going there.

The cartilage on the back of the kneecaps (a big problem area for me since about age 14) and on the ends of the two leg bones can also heal, given the right conditions.  The cartilage on the back of the kneecap seems to have the best chance of healing from the research I read.

Healing cartilage is difficult though.  As I said, poor or no blood supply.  Some areas only get their 'nutrition' through synovial fluid, which only happens by movement.  But too much movement/stress can increase the damage/pain.  Finding the right level of movement is the trick, but it is hard.  Lots of trial and error.

The other thing which helped me once I got my knees back to a slightly better level (through Celebrex and gentle walking) was strengthening supporting muscles to take pressure off my knees - glutes, hammies, front and side and back core.

My conclusion is Orthopedic surgeons are way too pessimistic about knee healing, and many just want to cut you open.  They seem to have no knowledge (or conveniently ignore) the healing possibilities.

At the end of my nightmare, I was talking to another runner in our gym who had torn his meniscus (MRI confirmed it).  I suggested he wait at least 12mths before jumping into surgery, forget running, told him about the exercises I did etc.  He did this and Hey Presto - meniscus healed, he's running again.


I've been looking into Celebrex as a way of trying to knock out the pain to allow me to get some pain free movement. However where I'm based  (The UK) they seem very reluctant to prescribe it. Will see how things go...

Offline vickster

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Re: Has anyone ever fully recovered from chronic PFPS
« Reply #13 on: July 30, 2021, 11:39:24 AM »
I’ve been taking Celebrex for a number of years (5?) on and off. Initially prescribed by an orthopaedic surgeon for chronic shoulder inflammation, continued by rheumatologist (both seen privately) for generalised inflammation. It can have cardiac and gastric side effects (like all anti inflammatories) so I don’t take every day and always with omeprazole. I usually only take 1x100mg a day but sometimes twice.
Discuss with GP or your knee specialist. My GP repeat prescribes my specialist initiated meds but they can be unwilling to initiate specialist meds if there are known risks. They should prescribe Naproxen with omeprazole though which is similar (albeit can be more gut rotting!)
« Last Edit: July 30, 2021, 03:58:43 PM by vickster »
Came off bike onto concrete 9/9/09 (lat meniscus, lat condyle defect)
LK scopes 8/2/10 & 16/12/10
RK scope 5/2/15 (menisectomy, Hoffa’s fat pad trim)
LK scope 10.1.19 medial meniscectomy, trochlea MFX
LK scope 19.4.21 MFX to both condyles & trochlea, patella cartilage shaved, viscoseal, depo-medrone

Offline SuspectDevice

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Re: Has anyone ever fully recovered from chronic PFPS
« Reply #14 on: July 30, 2021, 12:57:54 PM »


What you write is very interesting.

I think I developed synovitis after surgery, which was done to me by mistake The surgeon accidentally cut the external alar ligament instead of the tibial ileus band  and since then the knee is unstable and the patella swings inward.
As far as I know the synovium is used to regulate the synovial fluid in the joint, so if there is a problem the fluid is produced in excess, I understand it because the excess fluid is located right on the inside of my knee where the patella slams: the body is trying to contain the friction with liquid.



I agree with you that it is better to avoid going back to the operating room as much as possible, but in my case I think I have no other choice, at least I think I cannot stick with this misalignment as it prevents me from walk. I use tape to pull the kneecap outwards, this helps a little but is not enough.
Who knows how long it will take to regain homeostasis after surgery and maybe I'll never get it, but I don't think I have any other choice.

As for cartilage, I did not know that autologous regeneration is possible, I know of techniques such as prp or lipogems, but in the end they are more expensive palliatives than hyaluronic acid.

a question: for the cartilage behind the patella is a debriment advisable? or is it worse?

I cringe every time I read about a knee surgeon who cut the wrong thing.  Bloody cowboys playing God!

Yes, the synovium holds in the synovial fluid, but I don't know anything about producing excess fluid.  Mine certainly did not seem to.  My knee never swelled.

Your problem sounds like it stems from misalignment caused by a faulty surgery.  If it was me, I'd be seeking legal advice for compensation.

I had 3x prp and it did not help at all.

Everything I've read about patella debridement makes me think it is best avoided.  If a misaligned kneecap due to a faulty surgery is your problem, getting that sorted first seems to be the best idea?
L Medial menisectomy 2012
PFPS both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 90+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2021 - ride 3x/week, swim 2x/week, gym 2x/week, short runs 2x/week, back to short races