Follow-up, post-op (was: CONUNDRUM: 3 Top Knee Specialists... 3 Opinions!)

[Aztec]

I'm 43, (was) a triathlete, have a knee that *always* feels inflamed under any kind of load, and am totally confused. For 18 months I got no good answers from any orthos, as they chalked it all up to chondromalacia and shrugged. Then I started seeing the best in the field (renowned researchers, famous name clinics, etc) and suddenly I've found doctors with opinions. Sadly, they are in conflict with one another. See what you think?

Dr. "A"... suggests my kneecap doesn't quite glide perfectly well, thinks my patellar tendon and the area around it may have some very subtle scars from two previous arthroscopes (looking for a reason I couldn't fully extend in '85 after a bike crash, and then exploring the inflamed feeling and "fullness" at extension in '08 which continues today). Suggests an anterior interval release procedure where the tendon would be freed up, some fat pad removed as needed, and an area enervated. I saw someone he referred me to at a top university hospital, and he concurred (though he wants to see hip/glute physical therapy first, just because).

Dr. "B"... says that wrong, the kneecap glides fine and scar tissue is not an issue. He knows Dr A, and was even trained by the same famous knee genius. However, he believes it's all related to patellar tendinosis, entirely extracapsular. Suggests an eccentric squat routine, maxed out physical therapy, and PRP if that fails. And says no surgery.

Dr. "C'... is known worldwide, and is a "renegade knee theorist". Super interesting character. He says all the others are wrong, and thinking too much about structure and not enough about the metabolic biology of the knee as a system. He says I have synovitis, points to it and excess fluid in the knee, and that I need to rest rest rest, take anti-inflams, ice, and avoid all irritating movements. I’ve already done that on/off and had zero improvement. He suggests a bone scan to look for any irregular metabolic activity.

I really have no idea what to do now, or which direction to choose. It’s been so long now, I just want results NOW. I’ve already done stuff like cortisone shot, synvisc, ART, acupuncture, yoga, strength training, drop squats, months of rest, etc. Nothing. I seem to have built up more ability to tolerate more intense work, like one-leg squats, but my baseline symptoms never improve. And it’s keeping me from cycling the way I want to.

Ideas?

[Silkncardcrafts]

Sorry to hear about your experience. Whereabouts are you based ?

[Skinnycatz]

You sound a lot like me although I don't have nearly the function in my knee that you have.  I have lost a significant amount of cartilage though on my lateral side (under kneecap and lateral meniscus).  My patella tendon is scarred from some "partial tear" that happened on its own (no injury I can recall) and I have quite a bit of scar tissue in my fat pad from three arthroscopes.  My knee heats up every day.  The more I am on it, the worse it is.  It is warm first thing in the morning and heats up later in the evening with redness as well.  The docs (have seen a lot more than three! LOL) can't figure out why this happens.  Sure, my knee is arthritic but so is my other one and it doesn't heat up and get red like this one does.  I figure it is because this knee had three surgeries, that is the difference so it is probably scar tissue.  Also, my alignment (knock knees) is worse on that side so that doesn't help.

One recent doc suggested that an anterior interval release MIGHT help me.  I am afraid to let anyone touch this knee again for fear that the scar tissue would just get worse.  After every knee surgery, I have less function than before too.  I would love to know what doc suggested this for you.  How is your alignment?  How much scar tissue do you really have? 

If this problem doesn't interfere that much with your everyday life, I would just modify your activities and deal with things because more surgery could make it worse.  In my case, I have already modified my activities, given up every form of exercise I used to love....all I can do is go in the pool and do upper body circuit weight training, very little biking (any tension hurts the knee).  I try to strengthen with SLRs...any "loading" exercises are just too painful.  I live dragging an ice bag everywhere I go.  Ice is the only thing that helps.  I have been on high dose anti-inflams. for over a year but have had to stop most of that due to stomach issues.  Now I am trying various gels...my knee heats up no matter what I do.  I wish I could just get a new knee but nobody will do that because they all say things aren't BAD enough!  My x-rays don't show bone-on-bone yet....

Please let us know what happens with you!

Francine

[Aztec]

Sorry to hear about your experience. Whereabouts are you based ?

SF Bay Area.

[Aztec]

One recent doc suggested that an anterior interval release MIGHT help me.  I am afraid to let anyone touch this knee again for fear that the scar tissue would just get worse.  After every knee surgery, I have less function than before too.  I would love to know what doc suggested this for you.  How is your alignment?  How much scar tissue do you really have? 

If this problem doesn't interfere that much with your everyday life, I would just modify your activities and deal with things because more surgery could make it worse.  In my case, I have already modified my activities, given up every form of exercise I used to love....all I can do is go in the pool and do upper body circuit weight training, very little biking (any tension hurts the knee).  I try to strengthen with SLRs...any "loading" exercises are just too painful.  I live dragging an ice bag everywhere I go.  Ice is the only thing that helps.  I have been on high dose anti-inflams. for over a year but have had to stop most of that due to stomach issues.  Now I am trying various gels...my knee heats up no matter what I do.  I wish I could just get a new knee but nobody will do that because they all say things aren't BAD enough!  My x-rays don't show bone-on-bone yet....

Please let us know what happens with you!

Francine

Answers...

- The doctors at the Steadman clinic and Stanford suggested this.
- Alignment seems fine.
- No visible scar tissue. Steadman believes that it only takes very subtle scarring for these symptoms to occur.

Modifying everday life is certainly possible. However I'd have to drop my athletic ambitions which would be (and has been) severely depressing. What's most vexing is that my knee isn't that bad. Just bad enough to keep me from training more than just a little here and there. 

[ridgeline]

Go with all 3. Seriously.

B says jump into a squat routine. Not sure that's the answer, but he's a doctor and I'm not and why not try it.
C says get a bone scan. Why not?
A says a surgical procedure. Put this off until you can fully do B, C but then, why not?

I personally think you can have all the imaging, tech you want but having a good doctor actually go in an look around is another thing.
I know nothing about the surgery you've been offered but unless there's a chance of them making you worse, well...

By the way "C" sounds very Bay Area. )

[NadiaMac]

I don't have anything substantive to contribute here, but it is interesting to me that A and B both point to patellar tendon involvement.  Is there a diagnostic that they can do to "test" whether a patellar tendon focused approach will address the pain?  For example, injection of local anesthetic into the appropriate place and activity testing it?  Injection of anti-inflammatory into an appropriate place and seeing if symptoms are relieved.  I had cortisone injection into the sheath of a foot tendon done with my acute foot tendonitis about 4 years ago as a diagnostic leading up to surgery, and it really increased my confidence that surgery was the right thing to do. 

Good luck with your decision making. 

I am also a SF Bay Area frustrated cyclist-- knee pain has kept me off the bike for 4 months now and my progress has been pretty slow. I'm on doc#2 and will likely see the Stanford folks in a month if I continue to fail to progress. I'm getting really sick of swimming.

Is C at UCSF? 

[Skinnycatz]

You are lucky to be near Stanford...I would go with their opinions personally.  Steadman has helped a LOT of people on this board from all over.  Wish I could just go to him.  Why aren't there any OS's up on scar tissue problems here in Southern California?  I am still investigating possible nerve involvement with my knee but if it isn't that, the next step is the anterior interval procedure.  Today I had an ultrasound and there is still thickness of my patella tendon and lots of scarring in the fat pad.  Nothing could be seen to point to nerve involvement yet...the sympathetic nerve block is the next procedure and if that doesn't help, it isn't a nerve thing.  Nobody can figure out why my knee gets so hot and red in the evenings. 

BTW, docs don't want to inject a patella tendon with any anti-inflammatory...that can cause rupture from what I've heard.  Wish something would get the scarring off mine, don't even know how it got there!!

Good luck with your decision.  I know how hard it is to give up athletics.  The last time I was able to run was 2002...my knee started hurting and that was it for me.  Went back to step classes after surgery 1...probably shouldn't have.  Eventually, that eroded the rest of the lateral portion of my kneecap.  I really miss it but I would give anything now to walk around pain free.  I am almost never pain free unless there is an ice bag on my knee.   

Francine

[Aztec]

Is C at UCSF? 

I don't think so, although I know he teaches somewhere. His name is Dr Scott Dye and is a very bright and interesting character (I was only being coy with names earlier to keep any biases out of it).

[NadiaMac]

Yeah, he's at UCSF.  He's the guy who underwent arthroscopy without anesthesia in the 1990s in order to create a pain map of the knee.  It's a really interesting article and apparently was quite influential at the time in changing view on treatment/management of PFPS. One recommendation in the article is to absolutely minimize conditions promoting inflammation in order to permit sufficient strengthening to address imbalances.  Which kind of mirrors the recommendations you received.  He's got a lot of publications on his perspective on knee homeostasis, etc.  Might be interesting to read up on it as part of your decision making if you like doing that kind of thing and haven't done so already.

From pubmed:  Conscious neurosensory mapping of the internal structures of the human knee without intraarticular anesthesia.Dye SF, Vaupel GL, Dye CC.
Department of Orthopaedic Surgery, University of California, USA.

The conscious neurosensory characteristics of the internal components of the human knee were documented by instrumented arthroscopic palpation without intraarticular anesthesia. With only local anesthesia injected at the portal sites, the first author (SFD) had both knees inspected arthroscopically. Subjectively, he graded the sensation from no sensation (0) to severe pain (4), with a modifier of either accurate spatial localization (A) or poor spatial localization (B). The nature of the intraarticular sensation was variable, ranging from 0 on the patellar articular cartilage to 4A on the anterior synovium, fat pad, and joint capsule. The sensation arising from the cruciate ligaments ranged from 1 to 2B in the midportion, and from 3 to 4B at the insertion sites. The sensation from the meniscal cartilages ranged from 1B on the inner rim to 3B near the capsular margin. Innervation of most intraarticular components of the knee is probably crucial for tissue homeostasis. Failure of current intraarticular soft tissue reconstructions of the knee may be due, in part, to the lack of neurosensory restoration. Research studies of the knee designed to delineate factors that restore neurosensory characteristics of the musculoskeletal system may lead to techniques that result in true restoration of joint homeostasis and function.

[Aztec]

Yeah, he's at UCSF.  He's the guy who underwent arthroscopy without anesthesia in the 1990s in order to create a pain map of the knee.  It's a really interesting article and apparently was quite influential at the time in changing view on treatment/management of PFPS. One recommendation in the article is to absolutely minimize conditions promoting inflammation in order to permit strengthening to remedy knee imblances (with apologies to any orthos reading this- I am a former biologist, but not a ortho/medical practioner).  Which kind of mirrors the recommendations you received.  He's got a lot of publications on his perspective on knee homeostasis, etc.  Might be interesting to read up on it as part of your decision making if you like doing that kind of thing and haven't done so already.

Yes, he gave me a thick stack of reading materials, including that one. Very interesting. I'm actually surprised that he (or anyone) would have expected the patellar cartilage or meniscus to have much sensation. They are load-bearing tissues. If they had much feeling, doubtful we'd exist as a species because we'd not want to move! I think he had grade II or III chondromalacia but was asymptomatic. So naturally it shouldn't hurt to palpate the tissue. But that the fat pad and synovial are so sensitive is really interesting!

[drmark]

This doesn't make your decision easier, but from reading the fiirst post in in this thread, I immediately knew who all the players were.  All three of these luminaries and their disciples
all say the same thing as if they read it off a script.   Its human nature.  Doctors are human.  Orthopaedic surgeons are especially human and failable.

BTW, patella tendonosis is immediately obvious when looking at the lateral views on the MRI. 

[Skinnycatz]

Geez, Dr. Mark...your statements about OSs make me think that none of them are ever going to figure out why my knee heats up and gets red every night.  So far, I've seen five OSs and two pain management docs.  The latest one wants to do a sympathetic nerve block to rule out a nerve involvement even though the ultrasound just showed what we already knew from the MRI...scar tissue in the fat pad from my three surgeries and the thickening of the patella tendon.  I have lost about half of my lateral meniscus and the back of my kneecap is pretty bare but they all say that should cause all this heat and irritation.  I suppose if I went to Steadman, he would say the anterior interval release would help...just because that is what he does.  How depressing!

Francine

[crankerchick]

I suppose if I went to Steadman, he would say the anterior interval release would help...just because that is what he does.

This is what kind of irritates me about choosing a doctor.

[Skinnycatz]

Exactly! I am so frustrated from this last year of going to various doctors but I can't just give up!  I somehow need to find someone who is a good diagnostician who can understand how ALL the factors work together...the scar tissue, the cartilage loss, the alignment issues.  You would think that an OS who specializes in knees would be enough but in my case apparently it isn't.

Francine