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Author Topic: New/old forum participant trying to find resources regarding PFPS  (Read 4115 times)

Offline cspike2

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Hello.  I have been visiting this site off and on over the years, each time trying to commit to learn as much as I can about my knee issues, and each time getting overwhelmed.  I am trying to re-commit.

I was diagnosed with Chondromalacia 18 years ago, first in the right knee, and then a few years later in the left.  I was 28 at the time, and an active cyclist and runner.  My first arthroscopic surgery only found a mild frayed spot behind my knee cap and a plicae.  The second surgery on my left knee there was more damage, and I had actually worn a hole through the patellar cartilage, so they performed the microfracture procedure.  Extensive PT before and after my surgeries, I have been in a state of pain management ever since.  I was able to return to competitive cycling and triathlons for quite some time.  Over the years, when the pain became strong enough again, I found myself trying something new to help.  I have tried hyalgan injections twice, with the first attempt being successful, but short lasting.  I have been fit for custom bike frames, and had various fittings over the years to make sure I was positioned correctly.  I have had two MRIs, with the latest being in November of 2015.  The same doctor saw both of my MRIs, and his comments were that all of the weight bearing surfaces and ligaments in my knee look fine, I just have the damage behind both patellas, which he said really has not progressed that much between my MRIs.  Im now 46 and have two little boys that I want to be more active with.  Lately my left knee will swell for no obvious reason.  I have stopped cycling and running (for fitness), and have picked up pilates.  After viewing many of the posts on this site I feel like I have been lucky overall, but I have a garage full of bikes, and my two young boys that really make me want to do something about this. 
I am able to walk around, including stairs, mostly fine; I know my limitations. I feel like I need help focusing on treatment options and just general discussions about how to approach this.  I live near one of the doctors listed as a whos who in PFPS on this site, Dr. Dye, so I was thinking about making the trek into the city to see him.  Bear with me as I am not that familiar with many of the acronyms I see on this site.


Offline dal_knee

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Re: New/old forum participant trying to find resources regarding PFPS
« Reply #1 on: March 24, 2017, 01:54:51 AM »
The same doctor who did the microfracture x years ago, read your latest mri?   He/she will  not be objective about the latest state of affairs.  Perhaps get a second opinion.   The swelling can be worrisome depending on whether it's due to mal-tracking (try dry needling focusing on hips/glutes, in combination with standard physical therapy that again emphasizes hips/glutes) or either: (patellar OA or chondral defect). 

Think it would be great if you could consult with Dye....get the ultraconservative opinion first and commit to that since your case does seem very mild.
2007 - partial medial meniscectomy
2010 - full thickness chondral defect & adjacent subchondral edema MFC.   Direct result of stupid partial mensicectomy from 2007.
2014 - Subchondroplasty, chondroplasty, unauthorized 2nd partial medial meniscectomy.
2015 - partial failure of subchondroplasty.

Offline cspike2

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Re: New/old forum participant trying to find resources regarding PFPS
« Reply #2 on: March 24, 2017, 05:02:27 PM »
The doctor who performed the microfracture did not see any of my MRIs.  It was in 2000, and the arthroscopic surgery was performed basically to explore my knee, that is when the hole was found.  I was young and desperate, and did not take the time to really educate myself on the issue.
I've learned from doing pilates for a year, that my hip extensors and gluts are weak, and very unbalanced from left to right. I am very anal and critical about trying to be as symmetrical as possible, although I realise we all have a dominant side.
I have an appointment with the same OS I've been seeing for years, the same OS who has viewed both of my MRIs and performed the hyalgan injections.  He just keeps telling me to give the system 5 years and the stem cell therapies will be more available. 
I will contact Dye's office and schedule an appointment.  I'm just scared of getting my knees replaced, although I was told I could be riding a bike right now if I did. 

Offline cspike2

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Re: New/old forum participant trying to find resources regarding PFPS
« Reply #3 on: March 30, 2017, 07:13:10 PM »
I scheduled an appointment with Dr. Dye, much quicker than I was expecting.  Now I just need to get all of my knee history together and start accumulating questions to ask.  I've been down this road so many times, starting back in 1997.   :-\    Hopefully there are some new breakthroughs that can help me now a days.

Offline cspike2

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Re: New/old forum participant trying to find resources regarding PFPS
« Reply #4 on: April 11, 2017, 11:29:46 PM »
I had my appointment with Dr. Dye today.  Going back next week for an MRI, X-ray and bone scan.  I have another appointment with my usual OS this Friday, but I'm not sure what to ask about at this point.  I've never had a bone scan, only the MRI and X-ray.  Besides the obvious chondromalacia or PFPS that I already know I have, my left knee is producing more synovial fluid lately, which is why it appears swollen most days.
I am not looking forward to the long drives into SF, or starting from scratch, but I want/need to be active still. 

Offline cspike2

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Re: New/old forum participant trying to find resources regarding PFPS
« Reply #5 on: April 24, 2017, 07:57:39 PM »
Doctor Dye had to cancel his appointment on the day of my diagnostic tests, but I had the X-ray, MRI (left knee only at this time) and bone scan.  He scheduled a phone consultation to review my images, and I just got off the phone with him and he gave me as much info as possible, but I need to head back into the city for some better explanation.

X-Ray on both knees looked fine.  Bone Scan showed activity on the patella, the medial and lateral compartments.  The MRI shows signs of early cyst formation on the patella, but the femoral condyle looked ok.  Synovitis likely cause of my pain, but both of my knees are in early arthritic stage.
I tried to take notes as fast as I could, but it sounds like the majority of my problem is in my patellas.  Not sure if that is good or bad.  I've always wondered about patellar replacement, but from what I have been reading, you can't really do just the patella and not the femoral condyle.

I'll do some searching on this site for some of the terms he mentioned, but I'm always interested to hear anyone experiences from any else.
« Last Edit: April 24, 2017, 10:16:11 PM by cspike2 »

Offline cspike2

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Re: New/old forum participant trying to find resources regarding PFPS
« Reply #6 on: April 29, 2017, 12:50:30 AM »
Official test results.  I feel like I need to look up most of this info, but I am meeting with the Doctor again next week.
FINDINGS: 
   XR KNEES AP/PA BILAT WEIGHT BEARING    
No fracture or dislocation. No significant joint space narrowing    
or osteophytes involving medial or lateral compartments.    
 
Impression:
 
IMPRESSION:     
No significant medial or lateral compartment degenerative    
changes.

MRI Knee Left Without Contrast (both knees are bad, but my left is worse):
Sagittal, axial and coronal proton density and fat-suppressed    
sequences.    
 
FINDINGS:     
There is a physiologic amount of joint fluid.  There is no    
popliteal cyst.    
 
The medial meniscus is normal.  There is minimal chondral    
fissuring the medial tibia and femur.    
 
The lateral meniscus is normal.  There is a full-thickness    
chondral fissure lateral tibial plateau with bone reactive edema    
seen on coronal 8.  The lateral femoral condyle articular    
cartilage has minimal fissuring.    
 
The anterior cruciate ligament is normal.  The posterior cruciate    
ligament is normal.    
 
The medial collateral ligament is normal.  The lateral collateral    
ligament is normal.    
 
The patellofemoral alignment is normal.  Full-thickness cartilage    
fissuring and erosion is present throughout the majority of the    
patella.  Diffuse chondral thinning is present in the trochlea.     
There is edema and mild cystic change in the patella.  The    
quadriceps tendon is normal.  There is mild proximal patellar    
tendinosis.  No edema is seen in the infrapatellar fat pad.    
 
Impression:
 
IMPRESSION:     
1. Patellofemoral arthrosis with full-thickness chondral erosion    
throughout the majority of the patella.  Mild subchondral edema.    
    
2. Full-thickness chondral fissure with basal layer chondral    
delamination and mild reactive edema medial aspect lateral tibial    
plateau

Bone scan:
TECHNIQUE: Approximately 3 hours following the intravenous    
administration of 25 millicuries of technetium-99m methylene    
diphosphonate (Tc-99m MDP), anterior, posterior, and bilateral    
lateral images of the knees were acquired.    
 
FINDINGS:     
Right Knee: Abnormal tracer uptake in the patella.    
 
Left Knee: Abnormal tracer uptake in the patella, lateral    
proximal tibia, and medial proximal tibia.    
 
Impression:
    
1. Abnormal tracer uptake in the right patella.    
    
2. Abnormal tracer uptake in the left patellofemoral, medial    
tibiofemoral, and lateral tibiofemoral compartments.

Offline cspike2

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Re: New/old forum participant detailing Dr. visits
« Reply #7 on: May 02, 2017, 07:42:08 PM »
I had an in person consultation yesterday to look over my films with Dr. Dye.  I've been doing the OS and PT thing with my knees since the late 90's.  At this point I wish I would never have had my arthroscopic surgeries, but at least they were relatively minor procedures compared to what I could have done.  The one consistent piece I keep hearing from all of the OSs I see is that I am too young for knee replacement.  Dr. Dye was a little more adamant about it, saying I don't want to go there. 

So for now I will be working to restore my knees to a homeostatic state, but to what end?  Attempting to not load my knees at all through out the day, to ice them 2-3 times a day, and take NSAIDs for a couple weeks.  Walking and swimming are pretty much all I will be doing now a days, and I've voluntarily begun taking the elevator.  :P  There was no mention of strengthening my VMO or quads in general, just to get my actively regenerating/repairing patellas back to normal.  I left the office thinking I am now in a state of existence versus being active.  While I haven't ridden my bikes for fitness in almost a year, I still enjoyed commuting by bike and riding with my young boys.  I'm guessing that all ends now, but I will try to think more positively.
« Last Edit: May 02, 2017, 10:12:39 PM by cspike2 »

Offline reflex_nl

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Re: New/old forum participant trying to find resources regarding PFPS
« Reply #8 on: May 08, 2017, 05:45:03 PM »
wow, that's limiting a lot of activities... I'm more or less in the same boat as you, with a full thickness defect in the patella. Thanks for sharing Dr. Dye's input.

I'm also doubting about stopping PT and get full rest.

- Do your knees swell a lot?
- Do your knees irritate/hurt during regular daily activities?
- Do your knees get warm?


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 grade 4 damage to patella Nov'16
LK PT ongoing... in a lot of pain...

Offline cspike2

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Re: New/old forum participant trying to find resources regarding PFPS
« Reply #9 on: May 24, 2017, 08:13:28 PM »
I just got back from a two week vacation that in the past involved lots of activity.  Running, walking, swimming and snorkeling.  I don't run anymore so that was easy.  I limited my walking, but I was in the pool or ocean every day playing with my kids, or more so supervising them.  But eliminating the snorkeling was an absolute deal breaker; not going to happen.  So for the most part my knees did fine using fins, but I did try to behave.  I have been keeping a journal lately to track my pain, and I think it has actually made it worse since I am more aware.  I basically feel like my knee is made of glass, and I have to be careful doing anything.  I'm hyper conscious of how I position my leg, trying to avoid bending it too much.  Makes me feel rather useless just performing routine tasks at home.

Since I have been on the NSAIDS I have not noticed my knees swelling too much.  As far back as I can remember these days, my knees have always appeared bigger to me.  When they legitimately swell now a days, I get a feeling of instability throughout the joint.
Yes my knees hurt during regular daily activities.  Since I have been experiencing issues since 1997, I've gotten used to it.  The pain is tolerable for daily life, just debilitating for an active daily life.
Do my knees get warm?  I'd have to say yes, but not so much that I notice it. Back when I ran and road my bike, I'd say yes, it was noticeable, but that makes sense.

Is your pain just in one knee?  My pain is predominantly in my left knee, but my right is also damaged.  I keep wondering what Dr. Dye's regiment leads to?  To what end to I take NSAIDS and Calcitonin?  When my prescriptions run out, what next?  He didn't seem concerned with PT, just achieving homeostasis and avoiding replacement.  I have a follow up on 6/12, so I'll try to ask more questions.

Thanks for your post and questions. 

Offline Brandon123

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Re: New/old forum participant trying to find resources regarding PFPS
« Reply #10 on: May 24, 2017, 08:36:56 PM »
Thanks for sharing your story and experience with Dr. Dye. I have read a few of his research articles and his general treatment recommendations seem to be similar to what you describe (restore knee homeostasis, icing, NSAID, etc.). If you get a chance to ask him, it would be really interesting to hear what he says about PT.

Offline cspike2

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Re: New/old forum participant trying to find resources regarding PFPS
« Reply #11 on: May 24, 2017, 10:37:14 PM »
I did ask him about PT after my MRI, X-Ray, bone scan consultation appointment, when he prescribed the meds.  He kind of looked at me and said that PT is generally for getting your range of motion and flexibility back, and that I didn't appear to need either.  I've always thought of PT as strengthening too, but I guess that it can be included in the flexibility/ROM category.  But that all brings me back to the question I've been thinking about lately, to what end am I doing this?  Yes it would be nice to be pain free, but I've accomplished that periodically over the last 16 years.  Granted I apparently contributed to the damage in my knees during my periods of good pain management (cycling and running), but it would still come and go. So what happens after I finish with my NSAIDS and calcitonin? I don't want to be taking oral NSAIDS for ever, I like to use topical ibuprofen instead, when needed.  I guess with my age and active nature, I'm having a hard time believing my knees can maintain a homeostatic state for long?

Offline Brandon123

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Re: New/old forum participant trying to find resources regarding PFPS
« Reply #12 on: May 25, 2017, 09:01:42 AM »
Interesting what he said about PT. I have always struggled with PT in the sense that it often makes me worse, probably because my damaged patella cartilage is so sensitive to any type of load. At the same time I understand that muscles need to be strengthened...

I guess the aim of your treatment is to reduce inflammation, reach a steady state of low to none inflammation, and stay there. But I understand what you mean, if you go off NSAIDS and start being more active again, it will be difficult to maintain such a homeostatic state. 

Offline reflex_nl

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Re: New/old forum participant trying to find resources regarding PFPS
« Reply #13 on: May 25, 2017, 10:57:50 AM »
My pain is only the left knee, i'm 36 years old btw and enjoyed an active lifestyle untill the injury. Pain starts to build up slow during the day and at 6pm i'm needing an ice pack to reduce the imflamation. It seems pain is not coming from the cartilage (as dr dye also agrees) but from the inbalance of the soft tissues/homeostais in the knee. Oral niasd's dont help me much nowadays...  I wonder if it would help to completely stop all activities.

http://themindfulcaveman.com/my-knee-story-part-1-injury-and-recovery/
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 grade 4 damage to patella Nov'16
LK PT ongoing... in a lot of pain...

Offline Vickster

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Re: New/old forum participant trying to find resources regarding PFPS
« Reply #14 on: May 25, 2017, 11:03:10 AM »
Not sure what country you are in, but there are physios out there expert in dealing with PFS, might be worth a consult if able to access

Cartilage itself has no nerves but irritation to the lining of the joint or the bone underlying the damaged cartilage is the likely source of pain as you say
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