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Author Topic: chronic PFS- need advice, feel I've tried everything  (Read 9712 times)

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Offline reader278

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #45 on: February 11, 2018, 05:33:29 AM »
My MRI according to him showed evidence of synovitis, bad in one particular area so that is mainly what he will take out.

Offline Brandon123

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #46 on: February 12, 2018, 09:04:21 AM »
reader278, I don't remember if you already mentioned this, but has Dr. Dye given you a cortisone shot? I've read that he sometimes do that, not only for relieving pain/inflammation, but also as a diagnostic tool.

Jasey, have you tried any injections yet?
RK sharp pain while running, diagnosis chondromalacia patellae 6/09
RK arthroscopic chondroplasty 9/09
RK rehab, recovery, 90% normal, started running again -> back to square one 5/15
RK diagnosis patellofemoral arthritis + LK diagnosis chondromalacia patellae 8/15 -> conservative treatment

Offline Vickster

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #47 on: February 12, 2018, 10:16:04 AM »
Best to Avoid cortisone if your cartilage is in decent condition (ie no grade 4 or damage to the subchondral bone)
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
LK New MRI shows lat & medial meniscus tear & other stuff
RK MRI lat meniscus tear
8/1/15 RK Steroid jab,
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation

Offline Jasey122

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #48 on: February 13, 2018, 05:42:11 PM »
reader278, I don't remember if you already mentioned this, but has Dr. Dye given you a cortisone shot? I've read that he sometimes do that, not only for relieving pain/inflammation, but also as a diagnostic tool.

Jasey, have you tried any injections yet?

I sure did . Had 3 in each knee. It helped at the time.

Ive started physio again and Im making progress so far :).

Offline Brandon123

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #49 on: February 14, 2018, 09:09:54 AM »
reader278, I don't remember if you already mentioned this, but has Dr. Dye given you a cortisone shot? I've read that he sometimes do that, not only for relieving pain/inflammation, but also as a diagnostic tool.

Jasey, have you tried any injections yet?

I sure did . Had 3 in each knee. It helped at the time.

Ive started physio again and Im making progress so far :).

Great that you're making progress with the physio!
RK sharp pain while running, diagnosis chondromalacia patellae 6/09
RK arthroscopic chondroplasty 9/09
RK rehab, recovery, 90% normal, started running again -> back to square one 5/15
RK diagnosis patellofemoral arthritis + LK diagnosis chondromalacia patellae 8/15 -> conservative treatment

Offline reader278

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #50 on: February 14, 2018, 09:51:59 PM »
Dr. Dye did give me a cortisone shot and it helped somewhat but I still wasn't great. Then in January I got PRP which made the pain much worse and even after a month I could barely walk. I am day 2 post-op from synovectomy by Dr. Dye. Apparently he came across and removed a clump/knot of inflamed synovial tissue (which he told my partner was rare to be clumped or knotted like that).   I did't talk to him directly after sx yet and no cartilage damage which is good.

Offline Brandon123

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #51 on: February 16, 2018, 09:02:37 AM »
Sounds really good that he didn't find any cartilage damage. Hopefully removing that inflamed synovial tissue will make a difference!
RK sharp pain while running, diagnosis chondromalacia patellae 6/09
RK arthroscopic chondroplasty 9/09
RK rehab, recovery, 90% normal, started running again -> back to square one 5/15
RK diagnosis patellofemoral arthritis + LK diagnosis chondromalacia patellae 8/15 -> conservative treatment

Offline reader278

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #52 on: February 23, 2018, 07:45:44 PM »
So I'm about 10 days post op. Still on crutches, yesterday I overdid it and the knee felt warm with increased pain today. This road is so long!!!

Offline SuspectDevice

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #53 on: February 24, 2018, 04:53:38 AM »
So I'm about 10 days post op. Still on crutches, yesterday I overdid it and the knee felt warm with increased pain today. This road is so long!!!

Yup, heat in my kneecaps is always a sign for me that I've overdone it. I think once the synovial inflammation has been chronic for years, it is really really hard to eliminate entirely.
L Medial menisectomy 2012
PFPS in both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 80+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2018 - Started basic MTB racing, maybe try short triathlons in October?

Offline Brandon123

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #54 on: February 24, 2018, 10:14:00 AM »
So I'm about 10 days post op. Still on crutches, yesterday I overdid it and the knee felt warm with increased pain today. This road is so long!!!

Yup, heat in my kneecaps is always a sign for me that I've overdone it. I think once the synovial inflammation has been chronic for years, it is really really hard to eliminate entirely.

Same here, my knee gets all warm and red as soon as I push it the slightest. I don't know about your experiences, but the most effective way for me to curb this development (usually the heat starts in the late afternoon/evening) is the following: a hot shower and then immediately afterwards 20 minutes of icing the knee.

Sounds weird, but it is sometimes like I can stop the heat development a bit with this procedure. Interestingly, icing only is not as effective as a hot shower and then icing. It's like the thermometer of the knee resets for the rest of the evening or something. Maybe this is only my weird experience, but thought it might be worth mentioning :) 
RK sharp pain while running, diagnosis chondromalacia patellae 6/09
RK arthroscopic chondroplasty 9/09
RK rehab, recovery, 90% normal, started running again -> back to square one 5/15
RK diagnosis patellofemoral arthritis + LK diagnosis chondromalacia patellae 8/15 -> conservative treatment

Offline reader278

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #55 on: February 24, 2018, 03:56:54 PM »
I'll try that, thanks Brandon. I'm also on Celebrex now so hoping I may get a similar result as you SuspectDevice. My knees are not constantly burning, but I was also deconditioned and barely moving even before the surgery.

Offline SuspectDevice

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #56 on: February 24, 2018, 08:59:18 PM »
And take it easy & let the Celebrex do it's work - probably over several months.  I still think I did too much while on Celebrex, would have got a better result if I'd just done easy walking for 5-6mths, rather than getting back into leg exercises & freestyle swim kicking so soon.
Same Brandon - I've not tried the hot shower then ice, but icing def helps (e.g. like last night after doing a 30km solid ride with a group of friends).  In the past, I'd have done a ride again today, but I know now that pushing hard for 2 days in a row on my knees is a recipe for a major setback, so I try to leave at least a day between harder leg stuff.
L Medial menisectomy 2012
PFPS in both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 80+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2018 - Started basic MTB racing, maybe try short triathlons in October?

Offline reader278

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #57 on: February 24, 2018, 09:40:39 PM »
Have you guys tried any supplements like turmeric, ginger or omega 3 in addition to NSAIDs? Not sure they would do much but wondering if anyone has gotten results as an extra anti-inflammatory boost

Offline SuspectDevice

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #58 on: February 25, 2018, 07:23:43 AM »
Yeah, tried lots of natural etc. supplements.  Can't really say they did much.  Still take Cod Liver Oil tabs every day but no idea if it's worth it.

One thing though.  There is some recent research to suggest that low-dose aspirin has positive effects on the inflammatory chemicals (cytokines etc.) that play a big role in PFPS. I've been taking one of those daily & I have to agree it helps.  But probably only of use once you get beyond the real chronic constant burning pain stage.
L Medial menisectomy 2012
PFPS in both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 80+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2018 - Started basic MTB racing, maybe try short triathlons in October?

Offline Brandon123

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #59 on: February 25, 2018, 09:30:58 AM »
Same here, haven't seen any relevant difference with supplements. Still taking a daily Omega 3 supplement though, good for overall health even if it doesn't help the knees. 

However, I haven't tried turmeric and came across this study of turmeric in knee OA a few weeks back. And - at least according to this study - the effect is comparable to Ibuprofen. Cannot guarantee the quality of the study, but still interesting.

https://www.ncbi.nlm.nih.gov/pubmed/24672232
RK sharp pain while running, diagnosis chondromalacia patellae 6/09
RK arthroscopic chondroplasty 9/09
RK rehab, recovery, 90% normal, started running again -> back to square one 5/15
RK diagnosis patellofemoral arthritis + LK diagnosis chondromalacia patellae 8/15 -> conservative treatment