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

[crankerchick]

It seems like whatever the "specialty" is of the doctor, that is what they can do for you. Instead of saying, "I do TTTs, but I don't think that is best for you" they say "A TTT is the next thing for you to try and lucky for you, I do a lot of those." I don't want a doctor that diagnoses from within the box. Just be straight up and say, "this is what is wrong and I can't help you" or "this is what is wrong and I can help you." We as patients look at doctor's to be the expert and sometimes they aren't the expert in what might be wrong with us, so maybe they don't even know how to diagnose us; they are only thinking within their box. Its a catch 22. I'm happy for the people on here who have doctor's that said, before chopping them up in all the ways they know, "You need someone else to look at your knee."

[doublemom]

Yeah....  I've seen 4 OS's so far, and still haven't had my surgery   I'll also go see the doc who just did Sharon's PFJR to see what his opinion is.  I've had one "nothing's wrong", one "lateral release NOW!" (ran away from that doc as fast as I could), one "TTT/LR/whatever else I see at the time", and another "TTT/LR" from a doc with very little experience in the procedure.  Not one has pointed me toward another doctor who might be able to better help me with my PF problems.  Scary, very scary, when docs won't admit that someone else might be better helping than they are able to.

Andi

[Aztec]

Yeah....  I've seen 4 OS's so far, and still haven't had my surgery   I'll also go see the doc who just did Sharon's PFJR to see what his opinion is.  I've had one "nothing's wrong", one "lateral release NOW!" (ran away from that doc as fast as I could), one "TTT/LR/whatever else I see at the time", and another "TTT/LR" from a doc with very little experience in the procedure.  Not one has pointed me toward another doctor who might be able to better help me with my PF problems.  Scary, very scary, when docs won't admit that someone else might be better helping than they are able to.

Andi

This isn't entirely fair. I saw one of the 3 docs again today and he reversed his conclusion about patellar tendinopathy. Someone above said doctors are people. Yes, which means that most of them are good and want to help. I believe that all of the docs I've seen are genuinely trying to help, and if they thought someone else would/could help, they'd refer me (actually, one did). 

[crankerchick]

I agree with you Aztec. Although I know my post sounds like I have a distaste for doctors, it's for lack of being able to wholly put into words what I think. How I feel about doctors isn't fair. I think they have everyone's best interests at heart. I also believe its not fair for knocking a doctor that doesn't diagnose something he/she doesn't know to look for. They are people and they only know what they know, nothing more nothing less. So of course they only recommend what is within their arsenal. If they think they know what is wrong with you, then why would they think something is different is wrong with you, right?

So I'm penalizing doctors for basically, only thinking within their box and at the same time I am saying I understand that they only know how to think within their box. It just means its up to the patient to get online and do all the research and hang out in forums and the like to find out about diagnoses that their doctor doesn't know to consider, and finding doctors well versed in that condition if the patient thinks its the avenue to pursue.

[doublemom]

Everyone has different experiences with doctors... unfortunately some of us have not had good experiences overall.  My first OS took xrays and told me there was absolutely nothing wrong with me (holy guacamole, it's quite obvious from my x-rays that there is most definitely something wrong!)  I've also dealt with a wrist fracture with my daughter that was missed by an ER radiologist and two doctors.  Come to find out once I took her and her original hospital x-rays to a hand specialist, the fracture was actually very visible, but three hospital staff had looked right past it. 

An OS who was very highly recommended to me actually has very little experience with PF maltracking surgery, but he works in the same group of doctors as the OS who just did Sharon's PFJR.  He never once mentioned to me that one of his colleagues in the same orthopedic group was more experienced with problems like mine.  All he had to do was refer me down the hall, literally, but he never did.  I took me finding Sharon on this website and discovering that we're actually neighbors to find a more appropriate OS to deal with my problems. Very frustrating when you're the patient on the receiving end of it and you've had several doctors not be straight with you or not be willing to refer you to someone more appropriate.  

On the other hand, I'm a medical transcriptionist for a wonderful rehab doctor who has absolutely no problem referring patients to other doctors when needed or when something is outside of her scope of expertise.  I just wish more docs were that way... there are definitely some great ones out there, it's just a matter of being able to find them

Andi

[crankerchick]

Wow Andi, you took the words out of my mouth. You followed my thread on my escapades, so you know where I've been too. I just pray that I have found the right doctor now and that I have truly found the root cause of my issues, because I don't think I can take any more knee stress at this point.

I had a doctor call for an MRI, and the report says right on it, "moderate patella alta" yet that doctor mentioned nothing about patella alta. He also wanted to do a lateral release, and it only took about 5 minutes on google for me to have at least 3 different papers in my possession that said that lateral releases and patella alta don't usually go well together. I have no real indication of patellar tilt, which is what isolated lateral releases are best at addressing.

ANother doctor (who just happens to have an interest in TTTs and MPFL reconstructions) recommended a (surprise) TTT/LR for my "knock knees" and when asked about a possible rotational deformity, his PA-C told me they check for that on the first examination when they "check alignment and gait." Another 5 minutes on google and I had multiple documents suggesting rotational deformities are best diagnosed from ct scans, of which no doctor had ever called for. Would the doctor have told me differently? I don't know, because I would have had to drive the 40 minutes and pay another copay to find out. Meanwhile, there's a guy 600 miles away that will correspond on the topic with me via phone and email whenever I have questions. Its kind of a shame that I can get a doctor 600 miles away on the phone any time I need to, but doctor's in my own state I can't even ask questions directly.

I'm not saying the doctor's are incompetent or that they didn't have my best interests at heart but I just had a nagging doubt in my mind that what they wanted to do to me was the best thing for ME, as opposed to just the next things to try for people like me. Thank goodness for this forum because based on recommendations I got here, I went to see someone who appears to be more versed in patellofemoral issues.

Do my other doctors suck? Hardly. THey just only knew to diagnose out of the box of diagnoses that they check for. But it just makes it hard for us to patients to know who to listen to because we always wonder if what we are hearing is what is best for us or if it is just the best that doctor has to offer from his box of conditions.

[doublemom]

Cranker... yep, I hear ya!  The part that really scares me is all the people out there who DON'T do their research and just take the word of the first doctor they see, whether it be knees or any other body part for that matter.  My grandmother was that way, she would nearly bow down to her doctor and it drove me crazy, because she had a ton of health problems and just took his word 100% of the time without learning about her conditions and different treatment options.  Just "take this pill and all will be fine." 

Same with my daughter and the ER radiologist/docs when she fractured her wrist.  If I had believed them without question, she would have been given a little splint and told to go on about her business.  She was testing for her black belt in taekwondo in a month and if she had only had a little brace on, the fracture could have very easily displaced and turned into a TFCC injury because of the position of where the fracture was. 

I know there are some absolutely excellent doctors out there, but after doing a ton of Internet research and talking to people both online and in person, it seems like it's fairly hard to find the best of the best.  I guess what I'm trying to say in all of this is that it's up to each person to do their research and keep digging until they find the solution that works for them. 

Andi

[lb573]

Hi Andi,

I could not agree with you more! Patients need to become more proactive about their own health; need to realize that we all live once, and we need to make the best of it! It is very difficult to find a good doctor, and even more so, if you are not motivated to do your own research! For myself, i was seeing an OS when i initially injured my knee, told me at one point that 'it was all in my head' despite that i could not walk without my knee buckling on me, and my kneecap going funky...not in my head! For awhile i tried to live with that, until my PT basically made me give my head a shake, and said that it was time to see someone who knew what they were talking about! I then seen my current OS, who knew immediately what was going on with my knee, and we started down the path of repair. Looking back, i wish i would have walked out of my initial OS's office sooner than i did; from the moment i stepped foot into it, i felt as though i had walked into a retirement home...average age of his patients was about 80...and there i was 19. An OS that works for one person, may not be the right one for another person which is why it is so important to do your research. We do not live in the old days, where the good pt always took the word of their dr as right no matter what. It is now the time to become an active member of your health-care team! So again, must echo what Andi is saying, it is so important to do your research, find what works best for you, and don't be afraid to seek out 2nd, 3rd, 4th...opinions until you find the one that fits!

Leah

P.S. Andi, how is your daughter doing with her wrist now?

[NotSuperhuman]

Newbie here...

I'm on my second round of PRP (actually, I get my second set of injections tomorrow) and I did two rounds of prolotherapy for chondromalacia. Before starting these two, I had done PT, cortisone injections, and accupuncture. My OS wanted to do exploratory surgery. Let me just say: there is barely a risk with PRP or prolo. Sure, they hurt like crazy, but after your knee heals you either feel better or feel the same. I'd personally try this before surgery--there's no going back after that. For my first PRP treatment, my knee hurt horribly for a little over a week, then for six more weeks it felt just as fine as before then PRP. But at the start of week 7 my knee started to feel better. It stopped clicking and catching, and when I do PT it doesn't get red and hot like before.

My doctor says PT and PRP go hand in hand, so the recommendation of doing excercises works with the PRP recommendation.

My suggestion would be give PRP a try. If it works, you've saved yourself a lot of time and money.

[Skinnycatz]

Hi Tracey...

I am interested in some word you have on this post: specifically your "red and hot".  This describes my knee perfectly...it happens every night like clockwork.  Guess a certain amount of weightbearing is enough to set it off...PT used to set it off right afterwards.  I went to PT 11 months after my third surgery, nothing takes the heat out of my knee.  Now I am seeing a pain management guy and trying these anti-inflammatory gels.  My knee still heats up but it isn't as bad and I have kept up the strengthening.  My kneecap just doesn't like exercise.  I can go in the pool but that leg can't kick much and I can bike with hardly any resistance.  If I use a decent amount, it will hurt terribly. 

My question is: where did they do the PRP injections?  In the joint?  Usually this is used for healing of tendons...I have a problem with my patella tendon as well.  It has some wear and tear and scar tissue.  I was thinking all this time that the scar tissue from my surgeries might be the cause of the inflammation I get every day but you haven't had any surgeries so I see and get heat too.  Does it happen every day for you?  Maybe it is my kneecap and OS #1 just didn't tell me how bad it was because he wasn't ready to suggest a knee replacement. 

Francine

[NotSuperhuman]

Hi Francine,

PT used to make my knee get red and hot (the knee cap and then a bit above and below the knee), but so did walking for any (pathetically short) amount of time, or standing. Both of my knees are shot, but the left went first, so that one's worse. My right knee gets red and hot sometimes, but not as much and not as frequently as the left.

I haven't had any surgeries so far. I'm 27 so too young for a knee replacement and after many months of PT (and one cortisone injection that didn't work) my doctor suggested exploratory surgery. I really didn't want to deal with surgery, especially since my MRI and X-rays came back clean, so that's when I got prolotherapy. I got two rounds and they injected a dextrose solution into the joint and the surrounding tendons. They said that with my cartilage damage, prolo could take many rounds to start working, so after two rounds I didn't notice a difference. That's when my doctor (not my OS by the way) suggested PRP. I got the first round at the very end of July. She injected the platelets into the knee joint, the tendons around the knee--top, bottom, sides. In all, I think they do about 6-8 injections per visit, and I think with each injection she moves the needle around to spread the platelets throughout the knee and tendons.  I say think because I really just focus on breathing and not screaming during the procedure.

 It hurt SO MUCH and for a couple weeks my knee was so stiff. I couldn't even sit down or stand up without using my hands. Then, between three and six weeks post-PRP, my knee just felt normal like it did before the PRP. Then, during week seven, I was able to stand while holding my 1-year-old nephew and I didn't feel the need to sit after a few minutes. AND...my knee didn't turn red or get hot. When I went back to the gym to do some PT, it also didn't get red or hot. I really think the PRP is working...and I'm going back to get it again tomorrow.

The thing with PRP and prolo is that it purposefully inflames your knee, which seems counter-intuitive, but I believe it only because I think it's working for me. I never ice anymore--just heat every night. No anti-inflammatories for me (I can't even take Excederine.)

I have noticed strengthening helps, though. But before, even while my leg was getting stronger it would still be bright red after a workout or if I dared do something crazy like stand in like at CVS.

[FormerlyActive]

This is a really good discussion. Unfortunately if someone has a hammer everything looks like a nail. I don't know if it is ego or their medical practice that doesn't let them say - I don't know if I can help you can I refer to you to someone who can?

Its so hard as a patient because you have to diagnose your own knee before you even know which doctor to go to! Then there are the issues of geography, your health insurance's limitations, if that doctor will see you, how long it will take until they see you etc.

There has to be a a better way in such an advanced medical world.

[Skinnycatz]

This is a really good discussion. Unfortunately if someone has a hammer everything looks like a nail.

Boy, you sure hit the "nail on the head" with that comment!!  I've had to deal with this with all of the seven docs I've been to.  I hate it.  The pain management doc I am seeing is also a neurologist.  Even though he actually told me he didn't think my pain was nerve related he didn't have a good explanation for the heat so he used that to justify doing a sympathetic nerve block on me.  He specializes in these...but stupid me, I actually thought that he wouldn't do one unless he thought there was a decent chance that at least some of my pain was nerve related!  Geez...

I have always thought that it was just the chondromalacia getting worse that is causing the heat in my knee...the more I do, it must be causing friction to build up.  I just makes sense to me.  I do know that I have a lot of scar tissue in there, it always feels abnormal in there.  I get pain in the other knee but it is sharper pain, and mostly when I try to stretch it.  The knee replacement OS I saw this year (who threw me out of his office basically!) told me, after looking at my x-rays, that my "good" knee (non-surgical one) was actually worse looking around the kneecap than the left one.  That must mean that the scar tissue from these surgeries must be playing a role in my pain as well.

Prolotherapy is not for me (my expert PT told me) because it lays down scar tissue.  I don't need any more of that!  PRP is not covered by my insurance and is very expensive.  I'll have to get very lucky in Vegas! 

Francine

[CHILLYdogs]

PRP is not covered by my insurance and is very expensive.  I'll have to get very lucky in Vegas! 

Francine

According to my doc, PRP is the "Best deal in healthcare today."

(quoted from: http://www.thumpertalk.com/forum/showthread.php?p=8684681#post8684681 )

At $150/dose, it hardly seems you'd need to "get lucky in Vegas"!!!
Use the money you'd save on the plane ticket to find yourself a good doc (Yes! they DO exist!) and to buy yourself a chance for a life without knee issues.

All the best!

[stoker13]

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? 

I am hanging around here because I recently fractured my kneecap (3 pieces and multiple cracks) but I have had patellar tendonitis in the past  (I am an avid cyclist) and the treatment for it is strenuous knee activities, including squats and thrusts.  It worked great for me.  Just my two cents for whatever it is worth.

Anyone have a fractured treated conservatively (knee immobilizer, weight bearing as tolerated, no surgery)?  I am hoping that by looking at the fractures only doesn't mean that the OS has missed other potential problems like tears, etc.