Who should handle my next steps?

[Dedicated_Dad]

I've been thinking on this a lot.

My Surgeon did my knee for me on literally 1.5 days' notice. I called him on Friday afternoon, in a jam, and he did my knee on Tuesday AM. I am and will always be very grateful to him for this - you HAVE to know how much it took to make this happen. The gals at the hospital told me "we told him it wasn't possible, he said 'you can, you must, and you WILL. Make it happen!' "

I MUST be grateful for that!

That said, he didn't handle the problems I have had well at all. At first he reassured me, then he got defensive, then finally basically questioned my mental health. He never really tried to figure it out... "It's plastic and metal. Sometimes they make noise, we don't really know why. You'll get used to it!"

He seemed OK with the first "second opinion" -- the one that basically said "dunno - -come back in a year if it's still bugging you..." -- but I got a really odd vibe from him about the ANSWER I found. "Well -- I guess that's another theory..." It was like he didn't want to hear it.

Now that I have a diagnosis and solution, I have to decide who should do the work. I'll need an arthroscopy / fat pad (scar tissue??) excision, and possibly a new plastic bearing component.

Honestly, I'm pretty convinced it's going to need the thicker plastic, but will "play along" with the other stuff -- I'm willing to be wrong but have thought from the beginning it was too loose. The other Docs have said it was loose, but carefully said "not necessarily TOO loose..."

I know my Doc has the skills, but ... even when I told him what I'd learned, he was... odd. I'm not getting "warm and fuzzies" from him.

Still, it's a small town, and ... I really don't want to change surgeons. Before my TKA I'd planned on seeing another Doc, just on "GP"... I'd talk to 2 dealers before buying a car, so... He said he'd be happy to care for me after, regardless of who did my TKA. At this point, I'm not sure he'd be happy about someone else doing this work... Then again, I don't know if he'd do it, or ....

Part of me worries that with his "attitude" he may not do more than he had to... if the Doc says "excise the fat pad" he may not look for other scar tissue or whatever while he's in there... I'd like to know that whoever goes in will look around and be sure all else is as expected, not just in-snip-out...

I just don't know.

He's always taken good care of me in the past, but this experience and things I've heard from others make me think he doesn't handle "complications" very well... Seems like people either love him or hate him, and anyone with a problem seems to be in the "hate" category. I haven't found anyone to say "well, I had a problem but he fixed it." They all seem to have -- like me -- ended up having to go elsewhere for a solution because he didn't want to hear it.

Further, I once overheard him "ranting" about another patient who was complaining of pain several weeks after an arthroscopy, still riding a chair and crutches... -- "I told her she needed a psychiatrist." Funny -- that's basically what he said to me...

I'm torn. Gratitude makes me want to trust him, but...

I'm mixed up, and would welcome advice.

DD

PS: I also think, after reading my surgical notes, that I know why it's loose. It seems he did all the trial components before releasing the lateral compartment to give me full extension. I think this changed the "geometry" and caused it to be looser than it was when it was stuck at ~ -15... Does that make sense?

 

[JudyS]

DD
The problem I have with your doc is his attitude. The fact that you overheard him talking about another patient and saying she should see a psychiatrist and basically said the same to you, I would go with the doc who diagnosed it.
I know the feeling of loyalty, but you do not want to have any more problems with this knee. It needs to get fixed correctly .
good luck
Judy

 

[Dedicated_Dad]

Thanks for the input... I'm leaning that way too...

Just for clarity, the Doc who diagnosed the problem isn't "practicing" any more. His son has taken over his practice, and is also the chief surgeon at the big-city world-famous-hospital joint replacement center.

Odds are the son would be the one to do the work... I'd be OK with that, even though I never met him, because I'm confident he and his Dad have similar approaches and no doubt speak the same "language"

DD

 

[JudyS]

I've been in that situation with endocrinologists. I have a local one who I see on a regular basis . Then i have my extremely brilliant one who does mostly research and only sees patients on one evening per week.
When he prescribes something different than my local doc, I always go with what he prescribes or thinks is going on.
He was the one who diagnosed some rare conditions a few years ago after I flew across country to see him.

I always ask him for recomendations for docs as well.
Maybe you could ask the non practicing doc who he would recommend for the surgery?
Judy

 

[Josephine]

I'd agree with that. I think you need to start from scratch and see a totally new guy. In fact, I'd 'interview' two or three to see whom you feel most comfortable with - if you can, of course.

As for the procedures, they could do them in tandem. Do the arthroscopic trim and then go on and replace the tibial insert. Has been done that way before.

 

[Rowdy66]

Hey, Dedicated You pretty much answered this in your question. Why would you trust your future to a man who is insensitive and who is so egotistical that he can't face up to the fact that he is a human, not a god, and he might just have been wrong. I think you need to start over fresh with someone who makes you feel confidence in them. You know, I have long held that doctors are like mechanics, some do good work and you take your car back, some do poor quality work and you FIRE THEM!!!! You owe your doctor no more gratitude than you do a mechanic or a plumber, they wouldn't do the work if they weren't getting pain and neither will he. You really sound like a good man who has his feet on the ground, I am sure you will end up doing what is best for you. Anyway, good luck will keep you in my prayer. Rowdy

 

[Dedicated_Dad]

First, thanks again for the input. I think you're all correct.

I don't THINK I'll be able to "interview" Docs, in these parts it seems to take 4-6 weeks in advance just to get an appointment with one - which is why getting my "same day" a couple of weeks ago was such a miracle. Maybe that doesn't seem like much to you guys but...

At this point I think I'm going to go with "son of super Doc." Son didn't get to take over Dad's "chief" spot in a world-famous hospital due to nepotism - he's a super-Doc in his own right. Add in the fact that I am sure he and Dad can communicate well and... I think he's my best bet.

OTOH, my OS was there for me when I was in a jam, and has in the past always accomodated me whenever possible, always called when I requested, made room when I needed to see him... I think I'll end up going to big-city Doc to get the work done and back to local OS for after-care provided he's OK with that. He just doesn't seem to handle problems (with HIS work) very well, so eliminate that from the picture and hopefully all will be OK.

... As for the procedures, they could do them in tandem. Do the arthroscopic trim and then go on and replace the tibial insert. Has been done that way before.

I'm a bit confused here. Are you saying to do both at the same time?

If so, please excuse my ignorance, but what's the advantage to the arthroscopy if they're going to have to open it up to change the plastic? Why not open it up and remove the insert, thus allowing them to do whatever else with clear and easy access to flip the patella, etc?

Personally, I think I need the thicker plastic and would rather get it over with in one shot than to go through arthroscopy, pain and recovery, then start over with the new plastic... Let's just knock it out and get it over with.

Also -- correct me if I am wrong, but statistically speaking isn't it more likely to have infection etc. from two surgeries than one?

If I'm understanding you properly, how would you go about trying to convince the surgeon?

"Listen, Doc... I've been thinking about this, and ... I think we all agree that a thicker spacer would be optimal. I understand the conservative approach to things, but in the grand-scheme wouldn't it make more sense just to do this and get it over with? If you pop out the spacer it would make it easier to look around and get at the fat pad to excise it, make it easier to check out the rest of the joint, then pop in the new plastic? Why not kill two birds with one proverbial stone, especially when we can be SURE it will solve the problem and optimize my outcome with less surgery and therefore less pain, less recovery time, etc? "

Again, I am SO grateful for your time, attention and input. It's really been GREAT for me to have you guys to lean on, talk to, etc. Thanks so much!!

DD

 

[Josephine]

Good questions, Dad.

The issue here is one of access and invasiveness. If they did - as you suggest - open the knee and flip over the patella to excise said fat pad, the post-op effects for you would be as severe as when you had the original op. That is not necessary.

Plus, via arthroscope, it's possible to see exactly the bit of tissue that is causing the problem. It's a bit like taking a jelly fish out of the sea - once it's out, it goes all flat and not at all like its real self. This is it with the fat pad. When the joint is filled with saline, apart from the joint space being distended, the structures inside are almost exactly like they are in normal operation so the surgeon can snip away and be sure he is removing what needs to be removed. Either way, the fat pad needs to be dealt with arthroscopically come what may. But that's just my opinion!

Replacing the tibial insert just needs the joint to be opened, the insert removed and a new one slipped in. With luck, the entire joint doesn't need opened up as extensively as they did with the original op, though you might find you need to go through much of the PT again anyway.

As far as infection is concerned, yes there is a risk as with any surgery. Having two procedures at the same time will mean there is only one exposure, one anaesthetic, etc. However, it depends upon the surgeon - as ever.

 

[Dedicated_Dad]

Thanks much for clarifying! I guess I didn't think it would be nearly so bad, given that all the bone-sawing, pin/rod hammering, gluing etc. was already done... Learn something new every day!

One major problem with this whole thing is that YOU can move my leg around all day and never get a pop. Heck -- I can move it too, without popping, unless I am vertical... I've had a bit of a challenge visualizing how a thicker spacer would solve this, but I *think* it's because it would take up the slack in my quads/patella and thus eliminate one of the two contributing factors he mentioned... Sound right?

Thanks again!!

DD

 

[Josephine]

That sounds very right. Spot on!

 

[blondie42550]

About clicking, I had a clicking noise in my knees too. Mostly in my right knee when I was doing a certain exercise for my at home therapy. Sometimes it was in my left knee too when I was walking. At 8 mos post op, I haven't felt any clicking for months now. I have been trying to find the site where it explained what the clicking is. As best I remember, it has to do with the ligaments and them getting back to where they belong. If I find the site I will post it. If it is something that will work itself out, it seems kind of drastic to get cut on again! Is it painful, or just annoying?

 

[Dedicated_Dad]

It's excruciating. If I walk ~1/4 mile in a day I'm at a 7-8 on the 10-scale pain. Mine's definitely an "abnormal" event, I am pretty confident my Doc got it right.

Appreciate the input, though!

BTW -- Josephine -- I found my sheet from the Doc-visit today. His Dx was "hypertrophic infrapatellar fat pad." I remember seeing him write "fat pad impingement" on notes he kept. I'm guessing the total picture is ""hypertrophic infrapatellar fat pad" impingement"

The more I read up on this, the more convinced I become that my plica-incident after my surgery may be related -- I have to be sure to mention this to the surgeon...

Just wanted to clarify...

DD

 

[Josephine]

That sounds right - hypertrophic just means overgrown or swollen! In other words it's just the medical jargonese for it!

 

[Dedicated_Dad]

That sounds right - hypertrophic just means overgrown or swollen! In other words it's just the medical jargonese for it!

Gotcha. -- and thanks again!

The more I read up on this, I'm wondering about something else. I keep seeing the term "patella alta" which I understand to mean the patella is "high" proximally -- as in closer to the hip -- relative to the joint line. I've also seen the term "patella baja" which is the opposite, where the patella is too low.

The latter seems to be caused by a too-thick plastic component, raising the joint line higher than it was before. I haven't found a specific reference to "alta" saying the cause is the opposite, but it seems logical... There are certainly far fewer references to "alta" than to "baja" online, making me think it's less common...

Anyhow, looking at my knee, and considering the mechanics of what he said is happening, and his agreement that a thicker plastic may be necessary for me makes me wonder if part of my problem is "patella alta."

Further, looking at my x-rays and comparing them to the normal and patella-baja examples I've found online, my patella definitely seems to me to be sitting rather high, or proximal, to the rest of the joint.

This leg was shorter than the other pre-surgery, due to the old broken tib/fib and their overlapped mal-union. It's definitely shorter still now, which is especially obvious when I'm sitting with my feet together on the floor. Seems to me that this too could result in the "patella alta" thing...

Further, when I pick it up and it separates/elongates due to the slack, that would obviously place the patella much higher relative to the tibial components than it is when weight is on my foot and things are together...

Seems like a thicker plastic component would ultimately make my tibial plateau higher, thus making the leg longer and raising the joint line in addition to taking up the slack in the collateral ligaments and "tightening things up". It also seems like it would help with my extension lag, by taking up some of the slack in my quad/patella ligaments. It would also help with the "patella alta" if in fact that's what's happening... Naturally we'd have to be careful not to go TOO thick and cause "patella baja" or other troubles, but looking at my X-rays compared to many others I've seen online, it seems like my plastic is VERY thin...

Does it seem like I have a proper understanding of this?

Not sure where I'm going with this, except that I'm wondering if this ('alta') could be part of my problem and wanting to be sure I have a proper understanding of the mechanics......

Thanks again for the input!! I promise, when I am back on my feet financially I'm going to make a nice donation!!

DD

 

[Josephine]

Well, I wouldn't get too hung up on these terms - medics like to use them but they could just as easily use 'higher' or 'lower' instead. It's a bit like French - the grammar doesn't always translate. So when they use these terms they're really intended to be more of a descriptive than a condition or an absolute. Also you're tending to pick on individual points and worry them to death!

Let me put it this way: the reason for your present predicament is like when you pitch a tent. There are guy ropes on the sides and corners that, when properly taut, hold the tent as firm, balanced structure. If one or more guy ropes is slack, then the tent is unstable. If all of them are, the tent won't even stand. That's pretty much what has happened to you.

Now the patella is just a sesamoid bone, meaning one which grows within a tendon, and is not of any great anatomical consequence in the scheme of things. It's position is coincidental to the main problem which is that the quads/patellar tendon, along with the collateral ligaments, is slack so the entire joint lacks the appropriate tension. This can only be corrected by putting in a bigger tibial insert - the correct size of tibial insert! Then everything will settle into the correct balanced, anatomical state.

 

[Dedicated_Dad]

You rock!

I'm a bit of a geek in some ways -- I need to understand. Many times in my life I'll get off on some tangent and study everything I can find about some topic that caught my eye and/or my interest... In this case, of course, it's pretty much taken over my life since I can't walk through even a light day without some pretty extreme pain. Since I couldn't get my OS to listen for so long I just had to figure it out for myself...

The fact that I am currently stuck on something close to bed-rest ... I'm going a bit stir-crazy after 5 months and am determined to get past this ASAP. I understand the "P" denotes what's "possible" -- these things take time, and I'm actually OK with that.

I can't stand the dreck that passes for TV any more, can easily run through a dozen Clancy or Barker novels in a week and that's become boring... can't sleep 24x7... I guess being stuck on my rear thanks to this knee and being unable to ignore it because it stabs me smack in the awareness twice with every step...

Gah.

I just want this to be O-V-E-R so I'm trying to make sure I've got it all figured out... No job, can't really look for one with no way to know when I'd be able to work...

I'm a high-end computer systems engineer/consultant by trade. I usually get the stuff noone else has been able to fix. The puzzles are the only thing I really like about the job... I'm well suited to it because of the same personality traits that you're witnessing here -- I'll keep gnawing on it until I figure it out. I haven't been beaten yet in a 20-year career... =o )

So, with my biggest and most pressing problem being this knee, and this being about the only problem I've ever come across that I couldn't fix... The seconds are crawling, the clock's moving in slow motion...

Thanks for being there... You're right, I need to let this go, but...

Gah..

DD

 

[Doug]

Josephine,
I love it when you talk like that....Whew...

 

[JudyS]

DD,

I can totally relate to your needing to know every detail and figure it all out.
About 4 years ago my body started falling apart. A cardiologist thought my stroke level blood pressure was endocrine related as I was in excellent shape (an obsessive runner).
That started my 2 year nightmare with endocrinologists in Atlanta. I had high bp, high cholesterol, osteopenia, high cortisol, anemia and felt tired and just a mess. They would give me my test results and send me on my way.

I did lots and lots of research on line, came up with a diagnosis, they all told me i was nuts. Through my research I found a doc in Los Angeles who is primarily a medical researcher, came to see him. After running some tests, he emailed me in 2 weeks with the probable diagnosis of Cyclical Cushings , which is what I had come up with.
Ends up I have hypopituitarism, which has effected my thyroid, adrenal glands giving me secondary conditions and very low growth hormone.
The high cortisol and low growth hormone are what has eaten my bones and sped up the cartilage degeneration, hence, hip replacement, know I am in a knee sleeve thingy!!

Sorry that is so long, but I had to figure it out and it sure worked for me. Now I just can't come up with the cause for pituitary failure as it is usually a pituitary tumor and I so far do not have one!!!!

All of that to say I do the same thing as you.

Judy

 

[Dedicated_Dad]

Sorry to hear you've had a bad time!!

I don't know if you've heard or thought about this, but a friend had an experience that sounds somewhat like yours...

He was 32, in apparently good health, and suddenly his hips literally started disintegrating -- "osteonecrosis." He had to have both hips replaced at age 32.

The root cause was prednisone -- apparently in some (rare) people the corticosteroids cause their bones to die and disintegrate. There's a side effect I've never seen on the pharmacy handout!! He had a sinus infection, Doc gave him some prednisone, and ...

OUCH!!

Don't know if this applies to you or not, but thought I should share...

As to the other stuff, I've never been quite this focused on my own stuff before, it's just been such a hard time, trying to get the Doc to listen and getting brushed-off ... I knew if I was going to find a solution I'd have to figure it out for myself. Now that I have an explanation I wanted to understand it, which led me to question all this other stuff... I wish I had something else to do, or could just do something else!! But... I'm stuck here, on my butt.

That said, I've always been an "involved patient" - it's my body, I've only got one, so I make my Docs tell me what's going on. I want to understand... This has served me well in the past, I've just got to get past this knee, now...

Thanks again for being there!! I'm trying to "give back" to others too, now...

DD

 

[JudyS]

DD,

My body was overproducing cortisol, which is a corticosteroid. That did do some damage on bones. Also my adult extremely low growth hormone level also eats bones ,cartilage, turns muscle into fat, decreases your ability to exercise (cardiovascular fitness) and messes with your mind!!!

Those that are lacking are replaced and monitored every 3 months. The cortisol is monitored as well .

I too want to understand it all and have been very fortunate to have found excellent doctors.

Judy