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Author Topic: Another Patellofemoral "Mystery"  (Read 886 times)

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Offline krisann11

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Another Patellofemoral "Mystery"
« on: December 20, 2017, 03:45:17 AM »
Hey all!

I have a feeling I'm gonna be hanging out on this board a lot for the next year or so, so HI!

I've been a runner since I was 15 (now 24). Ran 2 marathons, the second one in the spring of 2015. Around mile 9 developed pretty bad AKP, which I subsequently ignored for a year and a half (was still running 15-20 miles per week). Eventually, it got so bad I couldn't run at all anymore without limping, which finally got my attention.

After 6 months of PT/ice/activity reduction, no improvement. Got MRI which showed a shallow trochlea, lateral tilt, cartilage damage on lateral patellar facet and femur, and a patellar bone cyst. Ortho surgeon literally told me "I'd be crying too if that was my knee" when I cried in his office. Basically told me not to hold my breath on being able to run again, but I guess I'm not ready to throw in the towel just yet.

Had an arthroscopy (meant to be chondroplasty too, but the femur damage meant it would've been pointless) on 11/20. Surgeon says patellar malalignment is worse than it looked on the MRI- basically my patella doesn't sit in the groove at all. He says the only thing left to do is try a tibial tubercle transfer. I'm not sure yet whether I want to try that... honestly it sounds terrifying. But if the possibility is out there to be able to run, jump, squat, climb, hike without pain? I'm willing to try anything. I just don't want to make it worse.

I'm going tomorrow to get a second opinion, reading posts on here, have been reading papers by Dr. Dye all night... trying to get as educated as humanly possible without, you know, going to med school.  ;) Anyone have a similar situation? Any of you Denverites who recommend a surgeon in Colorado specializing in PF stuff? Share your anecdotes, advice, success stories, horror stories, and particularly QUESTIONS that I should ask my surgeon(s) before making a decision.

Offline tinydinosaur

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Re: Another Patellofemoral "Mystery"
« Reply #1 on: December 20, 2017, 06:16:21 AM »
i would be asking:

- is the TTT going to 'fix' the lateral tilt?
- why TTT and not trochleoplasty? (since you have a shallow groove)
- worst case scenario what complications will a failed TTT cause? worst case scenario, if it fails are there more options? (is the surgery burning any bridges in terms of other options)
- what is the success/fail rate of the TTT? or what are the long term outcomes from a TTT? (you can also google public published studies on outcomes of that surgery)


you don't want to be thinking worst case scenario going into the actual surgery itself should you end up doing it but you definitely want to know should things not go exactly as planned if there are other options or what complications it could cause you.

personally my surgeon recommended away from TTT, they said you don't want to be fooling around (their words) with moving an attachment point when so many things can go wrong when (again, in my case) the MPFL surgery could correct the same issue, which was an unstable patella, shallow groove. i further had a trochleoplasty after but at the time it wasn't a common surgery to offer.

if you're uncertain it's your right to seek a second or third opinion, ask questions - a good surgeon will be willing to explain all of these things to you. you want to certain this is the right surgery for you and comfortable with what the surgery will be doing. i would highly recommend googling TTT outcomes as well and peruse through the results of this surgery.

Offline krisann11

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Re: Another Patellofemoral "Mystery"
« Reply #2 on: December 20, 2017, 09:10:44 PM »
Thanks for the info! I think my biggest concern is making it worse... I would never forgive myself for that.

I got my second opinion today and this surgeon is leaning even more towards TTT as the solution so that my joint quality doesn't continue to deteriorate. She said that was mostly based on my age and the too-lateral alignment of my knee as well as my family's background of osteoarthritis.

I feel a little more confident that both surgeons I've talked to have basically said the same thing. Although I definitely need to ask those questions about "what happens if it goes wrong?"

Thanks in advance. How did your TTT end up going? Did you get relief from it? 

Offline reflex_nl

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Re: Another Patellofemoral "Mystery"
« Reply #3 on: December 23, 2017, 12:47:29 PM »
Hi Kisann11,

I'm more or less in the same boat as you. I had several sub-luxations and the last was the worst. It resulted in significant cartilage damage to the rear of the patella. A scope was needed to clean-up the knee, but didn't help much to get rid of the pain.

I had 3 MRI's over the last year and showed: shallow trochlea, lateral tilt, lateral shift, grade 4 cartilage damage on lateral patellar facet.

I been researching a lot on the knee to find appropriate solutions, after speaking to 10+ OS's over last year I decided to have surgery mid-dec.

- MPFL reeffing to solve the lateral shift
- Lateral release to solve the  lateral tilt
- MCIC to fill the cartilage hole.

I'm recovering as we speak... I was worried that the surgery made things worse, as I don't know it for at least another 6 mths. However, doing nothing in case of misalignment and grade 4 damage leads to more wear and tear.

NB: For TTT have your OS check your TT-TG distance, and let at least two other opinions.

(you can see my MRI's here: http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=69981.30)
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

Offline SuspectDevice

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Re: Another Patellofemoral "Mystery"
« Reply #4 on: December 24, 2017, 04:42:02 AM »
Well, if it were me & I were only 24, but given what I know now about knee surgery of any type, I'd be going for 2 yrs of a Dr Dye type approach - massive activity reduction, staying within envelope of function, maybe some anti-inflams, and seeing if there was any significant improvement.  If not, then perhaps consider the surgery route.  A TTT is a big deal, and not something I'd be trying at your age.
L Medial menisectomy 2012
PFPS in both knees since
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 80+% cured via Dr Dye's research
2018 - back to 30% of training vol - that'll do
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2018 - Collarbone/ribs good, swimming again

Offline krisann11

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Re: Another Patellofemoral "Mystery"
« Reply #5 on: January 10, 2018, 09:44:02 PM »
Hey reflex_nl!

How did your procedure go? I had a second opinion (who basically said the same thing as first surgeon) and then re-met with my original OS yesterday. He says this is likely to continue to get worse if I don't do anything, and that he would do it if he were me, so I'm beginning to lean more in that direction.

I've never subluxed, so of course TTT is slightly less effective in treating pain than subluxation, but my OS thinks he can get me back to being pretty comfortable doing most things, maybe with the exception of running, but maybe not.

I'd love to hear how you're doing. Of course, I'm crazy nervous about this (probably going to schedule for February or March). But it's nice to know people who are going through the same thing!

Offline reflex_nl

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Re: Another Patellofemoral "Mystery"
« Reply #6 on: January 11, 2018, 04:35:17 PM »
Hi krisann,

For me, so far so good, but the knee is still swollen - hence, I hardly feel the typical cartilage pain related issues. And secondly, I'm still in  a brace that is giving me support. Cartilage needs at least 6 mths before I will see some results post op. In the meatime a lot of PT...

Yeah, TTT on paper gives good results:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2899368/ and https://www.omicsonline.org/open-access/clinical-outcomes-of-tibial-tubercle-transfer-for-anterior-knee-pain-andpatellofemoral-instability-2167-7921-1000204.php?aid=74609&view=mobile

But also read some patient stories:
https://justwhatikneeded.wordpress.com/summary/

Did the OS measure your TT-TG distance, can you share yours? mine was 16mm, which is borderline, >15 mm it could be needed, >20 mm, TTT is recommended.

It is a tough call to make, and it depends a lot on how limiting it is in daily life.

Reflex
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

Offline krisann11

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Re: Another Patellofemoral "Mystery"
« Reply #7 on: January 25, 2018, 10:28:37 PM »
@reflex_nl,

My TT-TG was 19 or 20 mm I want to say, but I had a scope done in November that showed that the MRI didn't fully capture how bad my alignment was. Basically my patellar facet sits right on top of my condyle (statically), so it's kind of evident now why all that PT didn't help.

I'm at the point where I'm in pain almost every day, with most activities that involve walking, especially stairs. I can't squat at all or dance really, which is a problem with the chorus that I sing in. My surgeon is at the point where he says he would do it if he were me, so we're going though with all the insurance stuff as I make my final decision. Keep me posted on how you're healing!

Offline krisann11

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Re: Another Patellofemoral "Mystery"
« Reply #8 on: January 26, 2018, 08:20:00 PM »
Heard from the insurance/billing department with my OS today... Whew!

The cartilage graft he wants to do is a "DeNovo" graft, which looks super cool but apparently insurance still sees it as experimental and therefore I'm going to have to pay for it out of pocket. Anyone had experience with that? Is there some fancy workaround that anyone has had success with with getting insurance to pay for the graft itself?

Offline reflex_nl

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Re: Another Patellofemoral "Mystery"
« Reply #9 on: January 27, 2018, 03:42:58 PM »
@reflex_nl,

My TT-TG was 19 or 20 mm I want to say, but I had a scope done in November that showed that the MRI didn't fully capture how bad my alignment was. Basically my patellar facet sits right on top of my condyle (statically), so it's kind of evident now why all that PT didn't help.

I'm at the point where I'm in pain almost every day, with most activities that involve walking, especially stairs. I can't squat at all or dance really, which is a problem with the chorus that I sing in. My surgeon is at the point where he says he would do it if he were me, so we're going though with all the insurance stuff as I make my final decision. Keep me posted on how you're healing!

Yup, PT cannot fix cartilage holes. TTT alone is likely not enough to fix it. Your TT-TG is indeed fairly large hence, I can understand the recommmendation of your OS.
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

Offline reflex_nl

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Re: Another Patellofemoral "Mystery"
« Reply #10 on: January 27, 2018, 03:47:08 PM »
Heard from the insurance/billing department with my OS today... Whew!

The cartilage graft he wants to do is a "DeNovo" graft, which looks super cool but apparently insurance still sees it as experimental and therefore I'm going to have to pay for it out of pocket. Anyone had experience with that? Is there some fancy workaround that anyone has had success with with getting insurance to pay for the graft itself?

I believe your based on the US - which city/state?  DeNovo is a US only option. I even called Zimmer to get it to the EU, but they have no plans yet. There are some DeNovo cases on the web. Typically quite succesfull. It is my second option in case the MCIC doesn't work. It is indeed expensive...  whole surgery incl. MPFL reconstruction was quoted at ~40k$. I haven't seen anyone who got it covered since it is quite experimental.
« Last Edit: January 27, 2018, 03:50:28 PM by reflex_nl »
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

Offline krisann11

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Re: Another Patellofemoral "Mystery"
« Reply #11 on: January 28, 2018, 07:11:37 PM »
Yikes! That's kind of terrifying! They quoted me at $5900 for the graft itself, and said insurance may or may not cover the procedure. I'm not sure how much at this point for the TTT, but apparently insurance usually covers a portion of that so I'm a little less worried about that.

I'm sorry DeNovo isn't available for you! It was basically my surgeon's go-to and I truly believe the reason it's still considered "experimental" is just because it's new-ish. It seems to be the go-to for most decent surgeons in the states these days!

Offline reflex_nl

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Re: Another Patellofemoral "Mystery"
« Reply #12 on: January 28, 2018, 08:39:29 PM »
Yes. It ia getting more common. Are your planning to go surgery?
The quote i got was including all the hospital and surgeon fees.
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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