terrible awful no-good very bad knee

[aaa]

mdk, my goodness you are one tough person.  Its impressive you've endured all of this and still have a good attitude about it all.

A TKR doesn't sound right ... I know, I'm not a Doctor, but still.  The issue is probably with the patella not the articular cartilage.  If I were to try and guess, I would put my bets on revising the TTT (basically moving it back to where it was, repair/reconstruct the LR, and MPFL reconstruction.

I'm basing this on other cases I've read here on kneeguru with people with your symptoms, and also that you sound like you had a normal knee prior to your injury/discloation initially.

Example case -  http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=40953.0  .  She couldn't walk at all, her TTT shifted the kneecap so badly every single step was agonizing pain.  I beleive Dr. Teitge fixed her problem, and she's running triathlons know.

Well, all of the above is still pretty much a guess, but I hope you'll consider seeing a surgeon with experience in PF issues.

[TOMMAX]

Hey, hopefully they come through with the PM doc asap so you can at least have better control of the pain. The meds suck, I agree with you there. Its frustrating being pill'd up, its sh*tty. I am right there with you. I havent been taking mine on schedule anymore either cause Im just sick of it too. But its the choice of suffering or relief.
TKR at 25 does sound pretty drastic and is probably unnecessary. Still hoping its a mechnical issue that can be sorted out with proper surgery. If there is cartilage damage hopefully there are some options to fix that up as well, but hoping even more that the cartilage is relitavly fine and its purely mechnical.. A TKR for the wrong reasons can make things even worse, believe it or not. Too bad there isnt some way you could get to see Dr. Sanders in TX for an eval. since he is right next door to NM. It can be tough depending on if your insurance covers it, travel costs, hotel costs, cost of a CT rotational scan and xrays, and the general feeling of a crap leg to lug along for the trip, etc, etc. So many hoops to jump through with these damn knee problems, frustrating. Just let me walk, take away the pain. Its all we want. Why cant it be so simple.

How does your leg feel at rest? If you rest it enough can you get the pain to a minimum?

[Brambledog]

Hey mdk,

Well you've had a sucky time of it recently (understatement of the year), but I'm really glad *someone* there has finally taken your knee (and you) seriously and bent a few ears that needed bending  Hope they get those pain levels under any kind of control ASAP. Keep shouting at them until they do...

TKR sounds drastic. I know drastic pain/drastic times call for drastic measures, but as another poster said, others have been there before, and not everyone needs to just have their knee replaced. There may yet be a solution that doesn't involve something so major. Hope for your sake that there is, anyway.

Just SUCH a bloody shame that your poor knee has been through such a lot of crap in the meantime. I agree that you need to see a specialist in your type of issues, but I also appreciate that you don't always get loads of choices about these things.... I'll have my fingers crossed that whoever you get next is a vast improvement, and gets it right this time.

You are getting somewhere with this now. And it's amazing how fast people can do things when the right person is shouting 

Take care,

Brams 

[mdk]

Believe me, I've put in for Dr. Sanders at *every* opportunity. It just can't happen -- UNLESS of course I'm still having problems a year from now, when they throw me out of the Air Force (rumor has it that's about a 101% chance, with a 1% margin of error) -- then I can go to whoever I want wherever I want. So in a way getting separated might be the best possible thing that could happen to me. How's THAT for ironic, Alanis Morissette? But yeah -- short of paying for every penny out of my own pocket (and I really don't have that many pennies -- which could be an issue soon I guess), it isn't gonna happen.

But I'm still counting the latest developments (aside from the pain, grrr) as a win, because someone who has actually touched my knee and looked at it is giving me the name of a specific doctor. If you remember back to the beginning, my doctors get picked by pulling a name out of a hat -- so this is the first time I've had any reason whatsoever to believe that the next doctor's visit will be any better than the previous one.



Response time! (gotta be careful -- typing cheerfully, apparently, sets off waves of pain. Ow.)

A TKR doesn't sound right ... I know, I'm not a Doctor, but still.  The issue is probably with the patella not the articular cartilage.  If I were to try and guess, I would put my bets on revising the TTT (basically moving it back to where it was, repair/reconstruct the LR, and MPFL reconstruction.

I'm basing this on other cases I've read here on kneeguru with people with your symptoms, and also that you sound like you had a normal knee prior to your injury/discloation initially.

I'm trying to remember what a "normal knee" was like..... I *think* you're right, I *think* I must have had one at some point (OW, STOP IT MDK).

Anyway you're probably right, or at least I hope you're right. The PT stressed that "I'm not a doctor -- _______ is the doctor" too. I think more I'm latching onto the SIGNIFICANCE of the prognosis than the actual procedure itself -- all I've heard from anyone so far is "Well, are.... are you putting ice on it sometimes? Yeah? Gosh, I don't know then.... are you.... are you putting TOO MUCH ICE on it sometimes?" Yeah real helpful doc. Now I have a medical professional who thinks my pain is serious enough to warrant a TKR -- even if there's a better procedure out there (and I really hope there is, because.... well I'll bring it up later), I'm being taken THAT seriously. That's an improvement.

Hey, hopefully they come through with the PM doc asap so you can at least have better control of the pain. The meds suck, I agree with you there. Its frustrating being pill'd up, its sh*tty. I am right there with you. I havent been taking mine on schedule anymore either cause Im just sick of it too. But its the choice of suffering or relief.

You're right here, so I probably don't even have to come up with a metaphor for you. It sucks.  (I realized halfway through quoting your post that I already responded to most of it, lol) (OW STOP BEING HAPPY, ME!)

You are getting somewhere with this now. And it's amazing how fast people can do things when the right person is shouting

Ain't THAT the truth.

TKR sounds drastic. I know drastic pain/drastic times call for drastic measures, but as another poster said, others have been there before, and not everyone needs to just have their knee replaced. There may yet be a solution that doesn't involve something so major. Hope for your sake that there is, anyway.

OK, so, let's talk about this. I wanna have some kind of an education in this area before I walk into a doctor's office, and it's hard to make Google answer the questions as I mean them.... Alright. First thing that comes to mind is, unless I'm right about to die, a TKR will eventually wear out and need to be replaced. I gather that takes anywhere from 15-30 years, depending on the type of prosthetic used, and also that young people wear them out faster. I've also learned that "Young people," where a TKR is concerned, refers to anyone around the age of 40. In other words, I could probably get a TKR tomorrow, wear it out, go in for a revision and be told (at the time of revision) "You know, you're a little young to be getting a TKR, we might wanna wait a few years."

So, seriously -- none of this "Oh I'm an AWESOME DOCTOR I can do a TKR on a teenager!" balogna, none of this "Our TKRs last for a ZILLION YEARS buy them buy them!" .... serious face. Realistically, if I get a TKR at age 25 and I do an average job of taking care of it, how long before I'm in a wheelchair?



Some perspective on the question might help.... I've managed to convince myself (do NOT ask me how) that an 'elective' amputation would actually serve me better in the long run than a TKR at this age. I guess like, you only have to learn how to walk on a peg once, and you're set. Versus a TKR, a screw comes loose and they have to open you up to tighten it; plus the 2-3-4(?) revisions you're gonna need anyway, plus any complications from any one of those that might happen, plus they might have to cut it off eventually anyway when I'm like 70, and then it gets a lot harder to "peg up."

So when the PT says "You need a TKR," part of what I'm hearing is "You might be better off just... you know........." And when he looks at me and says "Gosh you look nervous," I think that's probably why. SO. This probably isn't a topic best suited for the PF section I guess, but I'll start here anyway. How much good, SERIOUSLY, is a TKR going to do me over my life? Versus I guess like a C-leg or something?


NOT SAYING THAT I'm going down that road or anything yet -- still hoping for an easier option. I'm just saying, I wanna be prepared in case this discussion starts to come up in earnest.

[Lottiefox]

mdk, there is a HUGe amount in here I want to comment on but I'm a little bit inebriated...but one question I want to ask is whether they are still doing the  spinal nerve block thing to rule out or explore the possibility of CRPS? I KNOW there is very probably a mechanical issue here and the lack of help from the Gaba isn't overly inspiring for there being a CRPS element but if ANY possible surgery is being mooted you need to know if any trace of CRPS exists. If it does, anything else surgical should be halted until its controlled. I guess I am just saying to my mind you need to make sure it ISN'T the beast that we don't speak about before anything else happens.

TKR has a limited life span. I am not sure why it is being mooted for you. Clearly you need up to date scans to see what state the cartilage is in, but seeing as all your issues are patella related I cannot see that you will suddenly have lateral and medial total wiping out of cartilage that would warrant a TKR. SO, if the issue is OF and perhaps a severe lack of PF cartilage, then the answer is a partial PFJR...but.....that can ONLY be beneficial if the overall alignment and tracking and set up of the knee is correct - which from the sound of it, it isn't.

I agree that you're much further along in that someone has recognised the severity of the pain and is sending you to a doc who will ideally have the right viewpoint. I am just wary of someone saying "TKR" to you at such a young age, with little evidence it is needed. In my professional life I have worked with people with TKRs at 25 - but they've usually been motorcyclists who have such bad damage after a collision its TKR or nothing.

I really hope you get some answers soon. I feel for you, as someone sitting here tonight with a CRPS flare up in the foot and attempting to medicate with Lyrica, red wine and a James Bond movie.

Keep us posted, hope some of this makes sense...

lottie x

[mdk]

Lottie -- which Bond movie?

So far as I know, they still intend to give me the lumbar sympathetic block. However, it's been almost a month since that was ordered and *nobody* will tell me where we stand on getting it done. I'm totally willing to go through with it, because in my mind (and with these stakes) it's better to be safe than sorry. But, based on the results of the Gaba (none), I'm not going to go too far out of my way to get the CRPS-thing looked at again.



Also -- got myself some Oxys now, just in case. Once again the PCM-folks on base seem suddenly and dramatically more cooperative

[15run]

mdk,
I've been following your post-op .. rooting for things to work out for you .. hope you don't mind my two cents
Being tough can actually work agaisnt you sometimes  .. speaking as a 10-yr PFJ pain sufferer.  Things only got a little better once I started actively trying to lower the inflammation level.  For me that meant no standing for more than 5 minutes, working up from there and keeping legs outstretched 2- 4 hrs a day.  Much of this falls outside the field of medicine... i.e. the part about muscles, physics of various movements.  Do you have access to an OT?  Hopefully you can rest over the weekend...   

[mdk]

mdk,
I've been following your post-op .. rooting for things to work out for you .. hope you don't mind my two cents
Being tough can actually work agaisnt you sometimes  .. speaking as a 10-yr PFJ pain sufferer.  Things only got a little better once I started actively trying to lower the inflammation level.  For me that meant no standing for more than 5 minutes, working up from there and keeping legs outstretched 2- 4 hrs a day.  Much of this falls outside the field of medicine... i.e. the part about muscles, physics of various movements.  Do you have access to an OT?  Hopefully you can rest over the weekend...   

Weeeelllll I'd be a little tighter with that "Being tough" label if I were you, I'm a real baby about all this honestly.... I've been fortunate enough to get lots of time to rest, at the sole expense of having to do a whole lot for really short periods. Couldn't possibly have phrased that in a more confusing way, I know.... what I mean though is like, I go to work on, say, Tuesday. I have to hike into a building, sure, but then I get to sit down for several hours and stretch out and rest my knee on a second chair, all the good stuff. Then I hike to another building, then I lounge out again for several hours, then I come home and lounge some more. Now my previous supervisor had me going back and forth to my car probably like three or four round-trips a day, and that was pretty brutal, but for the last several weeks I've been able to limit my crutch-work a whole lot. The extra rest isn't doing a whole lot for me though.... I mean it's great that people are helping me out and letting me take it easy and all, I don't wanna downplay that, but in terms of pain-reduction it certainly doesn't FEEL much better. The new PT mentioned that he doesn't wanna do ANYTHING with bending my knee following the exam he did (hard to blame him -- like I said I think I sent him into shock). I'm experimenting with that on my own, keeping my brace locked out straight whenever I can manage it, unlocking pretty much just to drive or to let it bend slightly on a pillow or two. So far that's keeping me under an 8 more often than not, which, yeah, that's better I guess....



Anyway I say all that to reassure you that (a) no, no, I'm really not that tough, I swear! and more importantly (b) I'm a lifelong believer in rest at every opportunity. Some call it 'laziness,' I just call it 'hey I've got a medical excuse now!' Counting the last two days off from pain, I've got a four-day weekend of nothing but rest planned -- although at some point I'm gonna have to take out the trash, and if history is any indication that'll suck.

[Lottiefox]

mdk

Last night we watched Moonraker - my hubby's fave one. We have the boxed set in the aluminium box thingy - quite sad! I love Bonds - right from the early ones up to Daniel Craig although the ethos seems to be changing a fair bit in the latest one....Apologies of my typing was somewhat inebriated! I think you're wise in seeing if the lumbar block brings any relief, but as you say it certainly seems that something mechanical is probably at the root of the issue. Don't dismiss that they may co-exist though and keep on plugging away at both avenues....

Anyway today i have to spend the day chanting Bayern Bayern. Dislike Chelsea immensely! Did you watch the Man City and man U games last week? I know you mentioned you watched the man derby a few weeks back. We nearly exploded! Hubby is a Liverpool supporter (I know, someone has to be) but we were united in not wanting Man U to clinch the championship as we have so many smug friends who took it for granted with the 8 point lead! I nearly fainted when Man City pulled it off with seconds to spare - Mancini needed our drugs I think.

Have a restful and relatively pain free weekend I hope,

Lottie x

[mdk]

I'm in the states, so I can only catch the scraps they feed us from the REAL soccer leagues. But I did catch the City-QPR game. GOOD LORD, if that doesn't bring soccer alive over here I don't know what would. I guess it wouldn't hurt to have a team in the Olympics, lol..... still can't believe we didn't pull that off. I was all excited for London and now it's purely an academic exercise -- they probably won't even cover the men's soccer games over here. TRAGIC.

Anyway yes, I too was stunned and glad that City pulled off the miracle. Although, being a smug American myself, I probably would have claimed Queen's Park as my new "Favorite Team" had they won, just to poke the Brits



OH HEY so I just made a new thread in general discussion about potential TKR questions, in case anybody was thinking about commenting on that post I made earlier about that. Hopefully putting it out in general areas will draw a few more eyes that maybe don't check in here all the time. It's a little more melodramatic than usual but serious subject matter and all..... anyway, that thread exists now.

[aaa]

Hi mdk,

When I had my failed LR, I saw a bunch of surgeons in Canada where i live.  I really felt a bit hopeless as every Doc said it was in my head.

I went out of pocket and saw Dr. Teitge, a 4 hour drive from me.  I think Dr. Sanders is hopefully not too far from you.

Even though at the time, I knew getting the actual surgery from Dr. T would take a bit of miracle - and that miracle ended up happening - just having the assessment and seeing someone who understood my problem and could give me a clear diagnosis that made sense took a lot of stress of my mind and my lfe, in fact it probably saved my marriage just having that information as nobody really believed me.

Anyway, I hope a consultation with Dr. Sanders is a possibility, even if the military turns a blind eye to whatever he says, it may give you some piece of mind there is a real solution.

[mdk]

Like I said, once I can get the money, Dr. Sanders is my next stop.


Weekend's been pretty good, relatively speaking.... I'm being a little more liberal with the painkillers than usual and I'm still getting my fair share of pain, but I've been getting by. I thought maybe I'd post this phenomenon for y'all, see what anybody can make of it.... this is a little trick I can do, I call it "Chameleon." On command, I can go from this....



to this....



effectively blending in with any red surface. Now I know what you're thinking -- MDK THAT'S A COLOR CHANGE THAT MEANS CRPS, but here's the thing though -- this doesn't happen on its own. This only and immediately happens when I stand up and start putting weight on the leg -- the time lapse between the above photos is approximately one minute. A few minutes later, I snapped another image just to emphasize how isolated this is:



Right back to normal -- the time lapse here is however long it took me to type this far into the post. I dunno what it means, and neither does OS#1 -- I showed him in real-time and he just kinda scratched his head. I see him again on Tuesday, hopefully also I get the results of my MRI on that visit and hopefully they're good. Meantime if anybody has any clues about what's causing that up there, do be good enough to fill me in -- if I can ask about it at the visit by name, maybe that'll get me somewhere (as if it matters -- this should totally be the last time I see this OS anyway, and good riddance)

[Brambledog]

Hi mdk,

Lol at us shouting CRPS!

If your leg is going red ONLY when you stand, and consistently when you stand, then I would say it is more likely to be a circulation issue.... The only condition I can think of (and google, lol) that you should mention to your OS so he can rule it out is vasculitis, and only because it is relatively serious so needs picking up on. Chances are its not that though, as previously stated, I am no doc....

Pleased for you that things are moving more swiftly now. Hope some answers come you way soon....

Brams 

[TwoBadKneesUSA]

Well the PT got it!  Good thing there and hopefully yelled into the right ears! Glad at least some kind of pain management is in the very near future.  You cannot heal properly in that kind of pain. 

As for age for TKR sometimes it really boils down to quality of life and weighing all the options.  Seriously considering an amputation is not insane.  It may not be right yet, however you can only do so many revisions to a TKR which you know will happen if they do it at your age.  The fake knee may last a long time, it may not; don’t think there are any hard a fast rules on that one, esp on younger patients.  The partial I had can last many, many years (much more than a TKR) because of the type it is.  It could crap out sooner than expected too.   So many variables.  If the amputation is seriously on the table for you, bring it up to the new surgeon.  I can very much see the logic.  You may very well be able to have a more active life with a prosthetic than a TKR.  Lottie has some good arguments in her post too, that’s why I went with my PFJR as the rest of the knee was good.  Don’t toss out good working stuff you know.

Color change is some trick!  Could be some nerve stuff, maybe not CRPS (or whatever not sure I got the acronym right), but I had a leg that did that for quite some time after a LR.  There are other drugs than the Gaba(whatever) they use too, so PM may  have you try one of those.  Hope they do try to block as that could at least rule out a nerve problem.

Well so glad that something seems to be happening doc wise for you.  Sure hope they get moving on things.  I will tell you my PFJR knee is happy with dang near anything I throw at it!  My poor right knee can’t keep up (it needs one too, but it has to get in line, the back basically blew out a disk so we fix that first).  Good luck keep us posted!

And remember a TTT can be modified so if things are not quite lined up that way, possibly the new OS can fix that and get the soft tissues on each side the right tension as well.

Milly

[mdk]

unrelated lol:

I *just* got off the phone with the OS's office. Rough transcript.

THEM: Well, there's no real reason to have your appointment tomorrow, since you already saw him like a month ago.
ME: Well, I mean, I had an MRI like two weeks ago, and I was hoping to get the results on that....
THEM: Oh. You did? ..... hmm. You did.
ME: Yeah. I did.
THEM: Well let me see the note here.... um, have you had your appointment with _____ yet?
ME: Who?
THEM: ______, for your block thing.
ME: I don't know who that is, and no, I haven't heard anything from or about that person yet.
THEM: Well, I put in the referral last week, so let me give them a....
ME: Wait wait wait wait. Last week? You put in the referral last week?
THEM: Yep.
ME: Not a month ago when I got referred?
THEM: .....Last week.
ME: You know what? Go ahead and cancel my appointment for tomorrow after all.



I'm absolutely done with these people.