terrible awful no-good very bad knee

[Brambledog]

Sounds to me like they just don't know....

Now as a layperson  if I'd been shown two x-rays as you describe, I would have said that it indicated a clear loss of cartilage, either from the trochlear groove or the patella, or of course both. However, I have not had their fine education so really can't say! I know (all too well) that CRPS does cause muscle wastage, bone loss and other clear physical damage though, so I couldn't rule out the link, even of it is a bit sketchy! From your pain levels, i can quite see how you'd feel the doc claiming psychosomatic issues had his head on wrong that day....

Both docs have some holes in their argument, and should really have explained themselves a bit better, at least so one or other could be given some credence...

In the meantime you are still no further forward. These docs have a lot to answer for...

Brams 

[TwoBadKneesUSA]

WTF?  I would agree with Brams really.  There is cartilage loss somewhere perhaps or maybe scar tissue is locking down the kneecap.  Neither of these is "in your head".  WOW!

Milly

[kcknee]

Hi-

I read your post earlier today and really think you need to check out the information on Arthrofibrosis. Here is the link to the information page:
http://www.kneeguru.co.uk/KNEEnotes/node/433

Also, search the Arthrofibrosis Board for postings on  "patella baja" and  and "Infrapatellar contracture syndrome" . There are several posts that go into details on the symptoms and treatments. Here is one recent posting:
http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=59260.msg572796#msg572796.

The bottom of my patella used to disappear into my knee when I bent my knee when I had scar tissue wrapped around my patella tendon.

Hope this helps.

Kristin

[mdk]

The bottom of my patella used to disappear into my knee when I bent my knee when I had scar tissue wrapped around my patella tendon.

Exactly that. That is happening. I'm certainly going to bring all this up on my next visit (hopefully with the new doctor by then). I'll be back in a minute with pictures of it, once I muster the will to waddle over to my phone....

Both docs have some holes in their argument, and should really have explained themselves a bit better, at least so one or other could be given some credence...

It was just short of funny to watch the original doc scrambling to interject how "That's what I meant when I said (some completely opposite thing)..." I think I learned who's NOT the top dog in the office, at least, which gives me hope for the poor citizens of Texas.

There is cartilage loss somewhere perhaps or maybe scar tissue is locking down the kneecap.

I'm not a doctor but I THINK, neither of those things are good.

[RLE]

The bottom of my patella used to disappear into my knee when I bent my knee when I had scar tissue wrapped around my patella tendon.

Exactly that. That is happening. I'm certainly going to bring all this up on my next visit (hopefully with the new doctor by then). I'll be back in a minute with pictures of it, once I muster the will to waddle over to my phone....

Both docs have some holes in their argument, and should really have explained themselves a bit better, at least so one or other could be given some credence...

It was just short of funny to watch the original doc scrambling to interject how "That's what I meant when I said (some completely opposite thing)..." I think I learned who's NOT the top dog in the office, at least, which gives me hope for the poor citizens of Texas.

There is cartilage loss somewhere perhaps or maybe scar tissue is locking down the kneecap.

I'm not a doctor but I THINK, neither of those things are good.

I just read the last page of your thread. I have to go back now and reread the last couple pages because I'm a little lost. First I'd like to say how blown away I am by the collective wisdom of this board and what Bram said about being a layperson-HA! what I know at this point about my knee I've learned from reading this board. Literally not from one single doctor of the 9 or so I"ve seen. The patients on here have far exceeded the knowledge base of many surgeons apparently. Not all, but a depressing number.
Also, wow, the scar tissue/cartilage problems makes a lot of sense-I have cartilage loss too-it was torn off in the accident and I've had a lot of trouble with my kneecap locking down due to scar tissue and the pain is through the roof sometimes. Sounds like you're making some progress. I keep thinking it's physical not nerve (although that would cause irritation and pain)  I hope this gets resolved soon, I feel frustrated for you reading some of the things you've gone through. Ok, I had missed that one post on it being in your head while the studies show actual physical changes in your knee. Unbelievable.

[mdk]

In fact now that I know the changes are there, you really don't even need an x-ray to see them. I just snapped this:



All else in an equal position there's like a half-inch difference between the two knees. I... I really don't think I'm making that up. (also, Kaiser is waving at the camera).

Here's one of the vanishing kneecap under whatever you call that.... swelling, tissue, Idunno, no one else seems to care that it's there. I'm having a hard time with light and angles and whatnot getting this to show.... but as described, if I bend my knee it gets swallowed up in that mess of bulges sprouting out of the tibia.

[Brambledog]

Hmmmmmmmmmmmmmmmmmmmmmmmmm.

Ok. That swelling is still WAY out of order, surely?! Amazing what a nice bit of surgery can achieve...

Mdk, I know this isn't helpful, so apologies in advance, but your surgeons sound numptees to me. You need if at all possible to see someone with half a brain cell who can actually help you (and is totally disconnected from the military), rather than standing about scratching their heads (while up their own arses, evidently) and playing some twisted guessing game that is taking months and months of your precious time.

Something is wrong. We aren't there, and can only guess. I am angry for you that surgeons with years of training and hopefully experience can't do a better job than this with all the tests and imaging available to them. I mean really, FFS.

Of the two surgeons bickering during your appointment ::)which have actually operated on that knee? One or both? Maybe there's some avoidance and arse-covering going on...? Perhaps the military don't want to be sued?

Lol at Kaiser there napping in the chair, not a care in the world....you've just got to love animals....

Brams 

[Lottiefox]

Holy f****ing cow have they ever LOOKED at the knee and your knee before saying it is all in your head??? (And yes, I do know that psychosomatic pain isn't just someone making pain up - it can be very real....but usually in the absence of what is CLEARLY an unhappy joint!!!).

Kristin has posted some excellent advice and links regarding AF. AF is also the problem that Renn experienced who I referenced earlier, and her pain was off the scale. I have to say, that your leg doesn't *look* CRPS-like, although it is very tricky to tell via a photo. You don't seem to have any weird hair growth, shiny skin bits, mottling, etc etc. My foot of course looks pretty fabulous lying down but you can still the area of doom along my scarline and top of my toe, even when laying down.

What happens next? Can you push to try and see someone who can start again with this mess? I hold on to the hope this is a mechanical issue. This can be alleviated. You might never get 100% knee but I think most of us on here would settle for a knee that doesn't hurt off the scale and lets us live a life we can enjoy.

Wave to Kaiser. Big paw.

Lottie

[carty]

hey mdk,
I was really moved by your story and want to share some information I have. (Done research on my own behalf.)
Topic: TKR

Somewhere you wrote 15-30 years. Forget it. I have read scientific articles on that. 20 years would be long, even for the average "low demand" person, means elderly. For the "high demand" person, means younger and/or physically quite active, especially still working it is mostly less. 
So younger persons get better results at first, but it is lasting a shorter period of time.

Then I read an article that comparde TKR, arthrodesis and amputation regarding pain, activity level und satisfaction. While there was no big differerence in satisfaction TKR patience hat a reduced activity score and felt they need to save their knee. Amputated patients had the highest activity score. arthrodesis patients had no feeling of needing to save anything but activity level was not much higher than in TKR patients.

Said this I found the study was not clean from age effect. TKR patients are mostly older. Arthrodeses and amputated patients are younger on the average. Also it seems quite likely to me, that amputated persones are more likely high demand patients. So it's hard to compare.

On the first sight I also would think amputation is the better and lasting solution. About arthrodesis I do not think, because it will tear apart the hip and back in no time. And it's really sh*tty to sit with that stiff leg even on a normal table.
Then I ask myself what is an prosthetic leg doing to my other joints? I have not researched that yet.

(I'm not in a hurry to do anything right now, but I now my knees will wear out way befor my time. I have not much cartilage left on my one knee cap at the age of 32 and on the other it's also just a matter of time.)

[kneepaincure]

Amputation carries the risk of many extreme complications, among them 'phantom pain' which patients report suffering from for years together. Also what effect would it have on the remaining joint? If you read the posts of member Kimberly77, living with one leg is a precarious life, and more so when the other joint begins to give way. A more conservative treatment (if suitable) would be a PFJR if you only have isolated kneecap arthritis.

[mdk]

Amputation carries the risk of many extreme complications, among them 'phantom pain' which patients report suffering from for years together. Also what effect would it have on the remaining joint? If you read the posts of member Kimberly77, living with one leg is a precarious life, and more so when the other joint begins to give way. A more conservative treatment (if suitable) would be a PFJR if you only have isolated kneecap arthritis.

Completely understood. This is all assuming that it's down to just that or a TKR, which I'm starting to lean away from in a pretty big way. It really shouldn't come to that, though, I'm sure I'll have at least one more shot at a nicer option. Only trouble with the PFJR at this point is there's apparently (maybe?) some kind of tracking problem that's STILL persisting, which as I understand is a big contraindication. If I can sort that out and follow up with the partial, that would be great. Or who knows? Maybe the next doctor finds something much simpler to fix. Long story short it's too soon to speculate with any real passion.



Anyway the newest is that I've won a battle with the Referral Management office -- and I do mean a battle. Remember when I said I was willing to go along with CRPS treatment as long as it didn't interfere with whatever else we were trying? They ignored that sentiment. My PCM put in a new request for a pain management doctor almost two months ago (that's how far out the guy was booking); last week the RM folks cancelled the referral without notice (as in, they didn't even call me to let me know -- I found out from a third party) because on a technicality, the lumbar block thingy counts as pain management. Who knew? When I stormed into the office to ask what the hell was going on, they turned me out with a phone number and said "Sorry, start over." I explained "You know I already made an appointment for the 20th, right?" They apparently didn't know -- but after I left, apparently, they had the courtesy to call the new PM doctor and cancel the appointment, again without telling me. But despite their best efforts, somebody else cancelled too, and now I'm getting in tomorrow after all. Take that, jerks. My late new year's resolution is to stop by their office every time I'm nearby, and fill out a scathing customer satisfaction survey.

[Brambledog]

Hi mdk,

Blinkin' 'eck, what a thrilling life you lead.

Well done with the pain management appointment, always good to fell you've got one over on the pen-pushers!

Re a PFJR: I was told I was in line for one, but both my OS and my physio have told me that more and more now they are thinking again before doing them as they are not lasting as long as they initially hoped, and they are looking at revision to a TKR within a few years for a lot of patients. Especially so if tracking is already an issue. In my circumstances with the CRPS that alone makes it a no-no. Apparently the TKR is a better option when there are major issues, and has more likelihood of giving the patient a good many years of surgery-free life. I'm sure there are many with successful PFJRs, and many surgeons endorsing them, but that is what my lot have said! Of course, they could be wrong....

Also, IF you did have crps, lumbar block success depends on many things, whether the strength is right, if it's in the right place, etc. Many people with confirmed CRPS have to have several before the right combination is hit on. Just throwing that in the ring. I agree with Lottie that your leg doesn't look CRPSy, from those photos the colour is good, no shininess, hair growth similar on both legs, etc. You do have significant muscle wastage and swelling, but then you would anyway considering everything that knee has gone through... At least they're thinking about it - at least it's something they can rule out!!

Good luck with the appointment.

Brams 

[mdk]

Oh man.


So two days ago I got another note in the mail, saying all future appointments with my OS are cancelled, by you guessed it, the Referral Management office. Needless to say I stormed in there like Sherman to the Atlantic.... would it be insensitive to say the woman who worked there was completely and totally cowed? I think they received my feedback. She was scrambling so fast to take care of me she almost fell out of her chair. I ended up getting a sit-down with the civilian supervisor (who was no more competent, but at least a little more receptive) and calmly had what I think will ultimately be a productive chat about when it's okay to cancel all my appointments without asking first.

The explanation for the latest cancel was that my request for a second opinion finally -- a month later -- got approved. Unfortunately the doctor to whom I was referred said he didn't wanna touch me, which is a sign of things to come I think.... at my insistence the RM folks talked him into a consult, with the understanding that he's never going to operate on anything.... still, might get some answers, which would be better than nothing. Also I got myself a TENS unit, which is great for most of the day but still nowhere near strong enough to handle the major pain.... but it's an improvement nonetheless.

OH -- forgot to mention, I saw the PM doctor on Wednesday, which I was really proud of. He said "There's nothing I can do for you, go ask your base doctor for morphine."

[TwoBadKneesUSA]

WOW!  Unbelieveable!

[mdk]

Just checking in again, because I've been pretty severely bummed out lately and misery loves company. I've had a few more appointments with a few more people, and no new information from anybody.... Started several significant complaints against my TriCare/Referral office through a couple of channels, because I've been getting more of the same (most recently, they left me high and dry for a month while a PT referral expired on their desk). I *did* actually finally get another PT appointment today (yes, the first one since my last posting -- that's how long it takes for RM to get anything done). My first time in the pool.... I'm sure I should give it more time before I make a final judgment on anything, but it was just awful. I've basically lost all hope at this point -- it's not getting better. I honestly don't think it ever will. My next appointment with the OS is on the 21st, and if nothing changes by then.... I dunno. It's been a year now since my first surgery. The grinding, popping, clicking is more frequent and more painful than ever, and I'm more restricted than I ever thought I'd be. I'm in my bed more than I'm out of it.... and I dunno how much longer I can put up with this. I've said it before, I know, but if I can't fix this leg then !@#^& this leg. I don't need it.