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Author Topic: Patellar tracking disorder, getting worse despite PT and braces  (Read 497 times)

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Offline Fennel32717

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I'm 19, have had rheumatoid arthritis (currently in remission) for 16 years along with what several doctors and physical therapists think may be classical Ehlers Danlos Syndrome, but I'm still in the process of seeing a geneticist to confirm it's EDS. Also have had close to 30 corticosteroid injections in my joints as its the only thing that reliably helped my RA for most of my life; many were in my knees, which is also where it was worst.

For almost two years my kneecaps have been subluxating even with slight activity. It can happen walking, standing, riding a bike, sitting down or just laying in bed. It's been gradually getting worse despite physical therapy (which I've been in for all of this past year and on and off for years before), compression braces provided by a doctor and kinesio tape. Both knees. The braces I have are sleeves with holes for my kneecaps and they don't help, and make pain worse.

Currently, every couple weeks my kneecap will pop out and be horribly painful so that I can't move my knee at all. 1-5 times a day it will start sliding out, but at first its only discomfort and mild pain; I usually catch it then and fix it before it fully pops out and gets to the more extreme level. I've gotten very good at putting them back in place myself but lately its been harder to do. Can't remember exactly which terms my doctors have used beyond patellar tracking disorder but they seem to move out of place both upwards, outwards or occasionally to the inside of my knee. My physical therapists, rheumatologist and ortho all say they can tell my kneecaps move much more than normal when I bend and straighten my leg. I'm extremely flexible and both my knees will bend backwards a few inches. I have pain in and around my knees, particularly in parts that wrap around them.

I'm currently waiting to see my ortho but it'll be weeks, and my rheumatologist is supposed to contact me before then after talking to him and seeing what other options might be out there for braces (nothing definitive until he sees me of course).

Any suggestions? I'm concerned surgery may be necessary if things keep going this way.

Edit - also had x-rays of each knee which looked normal
« Last Edit: August 05, 2017, 09:16:43 PM by Fennel32717 »

Offline Vickster

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Re: Patellar tracking disorder, getting worse despite PT and braces
« Reply #1 on: August 05, 2017, 12:06:07 PM »
Have you been offered biologics for the RA?
Steroid is bad for articular cartilage so looking at alternatives would be sensible to avoid developing osteoarthritis
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation
LK scope 10.1.19 medial menisectomy, trochlea microfracture, general tidy up

Offline Fennel32717

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Re: Patellar tracking disorder, getting worse despite PT and braces
« Reply #2 on: August 05, 2017, 05:53:17 PM »
Yes, I've been on every available treatment and its currently in remission.

Offline reflex_nl

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Re: Patellar tracking disorder, getting worse despite PT and braces
« Reply #3 on: August 06, 2017, 08:06:30 PM »
That sounds painful... sorry not much help here, but I would get it fixed to preserve your cartilage as much as possible
RK Patella Luxation in 2000
RK Scope grade 2 damage to patella
RK PT for 4 mths, recovered 90% after 4 years
LK Patella Luxation in Oct'16
LK Scope to remove loose bodies (grade 4) to patella Nov'16
LK Lateral Release + MPFL Reefing + MCIC in the UK Dec'17















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