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Author Topic: Only good for a week 'syndrone'  (Read 26856 times)

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Offline Boydy

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Only good for a week 'syndrone'
« on: January 03, 2006, 11:23:21 AM »
Has anyone had the same experince as this, ? I have been trying to get back to 'normal' activities for 11 months post LR now.  And I am seeing some sort of pattern forming, it seems EVERYTHING I try, if it is successful at all, seems to only last for a week ( 2 weeks tops). As you would imagine I have tried umteen dozen different PT programs, tried acupunture, drugs for nerve stimulators, Bowen massage, taping, braces etc, etc,  ::), and each one of these things that I have tried seems to work for awhile, and I think, " at last, I have found a way, or I've broken that pain and swelling cycle,"  but it always goes backwards, ( and its not always because I then go overboard and push my knee just a bit too far)  I have learnt that the hard way, that is what I used to do. :P  But I am really concious of going slow and steady, and it still only seems to last that dreaded week or two before it spirals backwards. :-\  This has been going on for so long now that it is really getting obvious.  Has anyone else noticed the same sort of thing happening to them.  Curious to see if it is just my imagination.  ???
Boydy
Arthroscope to repair meniscus tear, 10/04
Arthroscope for Lateral Release & repair another medial meniscal tear, 2/05
"Time heals all wounds"
Gosh I sure hope so !!

Offline KarenS

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Re: Only good for a week 'syndrone'
« Reply #1 on: January 03, 2006, 03:04:37 PM »
I deal with the same. I really think that even if you think you're not pushing too hard, you are. I'm beginning to realize that with me. It's nearly impossible to stop what you're doing and sit down when you feel fine. I felt great the past two days, and even though I was conscious of not *really* overdoing, I still did more than usual, and today I feel it a little bit. I was told by my old therapist that some people need to increase their activity by only 5% per *week*. He said that factors in to maybe 5 minutes extra activity per day. Therefore, you can see how you can do "too much" and totally not realize it!

Offline shade

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Re: Only good for a week 'syndrone'
« Reply #2 on: January 03, 2006, 03:18:23 PM »
Boydy & Karen,

Ha!!Ha!!  Well, guess it is not funny, but we all seem to end up on the same posts.  Guess that it is not your imagination unless we all have the same one and that is doubtful.

Anyway, I was just thinking the same way.  When I first got my tru-pull wraparound - I could actually walk and do some things without any pain.  It felt wonderful and I actually felt that I might be on the right road again and all I'd need was time to see if my patella might possibly go back into place again or get a surgical procedure to do it...... Well, now my chondral lesion is rubbing and getting irritated all the time so it just makes a person wonder what else can you ever do that would work. 

The frustration is what gets to me - I hate thinking about my knees, but that is all that I can think about because they always hurt & prevent me from having some sort of lifestyle.  It is a viscious catch 22....

Hope that we have some reasonable answers some day......  ~Shade
July '05 (RK) - LR/debridement
Mar '06 (RK) - Open LR + Allograft w/OBI TruFit Plug + Fulkerson TTT
 Feb '07 (LK) - LR + Fulkerson TTT

Offline Nettan

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Re: Only good for a week 'syndrone'
« Reply #3 on: January 03, 2006, 03:45:13 PM »
A ongoing circle..with a start but no ending...just going around.
I can recognize this and really have no answers why it is like this.
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline Heather M.

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Re: Only good for a week 'syndrone'
« Reply #4 on: January 03, 2006, 07:00:47 PM »
This is just my opinion, but there has to be a reason for the ongoing swelling and pain.  Find that, and you will find your solution, too.

Heather
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
http://www.flickr.com/photos/hmaxwell

Offline KarenS

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Re: Only good for a week 'syndrone'
« Reply #5 on: January 03, 2006, 07:49:42 PM »
There's always a reason, and mine is the fact that my ITBs keep tightening up when I try to strengthen my pathetically weak quads. My new OS agrees with my old one who said that when the problem isn't corrected fast enough and the quads get that weak, the weakness then becomes your main problem. So you need to strengthen the quads (and, in my case, the hips). But if you don't do it easy and slow, you will reaggravate the original problem (in my case, the ITBs). This is the "downward spiral" that so many OS's refer to in regards to PFS.

I'm pretty sure Boydy knows her problem is maltracking...? (Am I remembering that right? Isn't that what the brace is for?)
« Last Edit: January 03, 2006, 07:53:43 PM by KarenS »

Offline shade

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Re: Only good for a week 'syndrome'
« Reply #6 on: January 03, 2006, 09:43:15 PM »
Hi,

Here is what I think about solutions, but this is only my opinion...... 
If you live in the right place & find the right PT (who actually has training) and/or find the right surgeon - then, hopefully will be on your way to finding solutions. 
This can be a daunting task in quite a few places & sometimes may take years.  Sadly, by then you can have secondary damage besides the original problems & these conditions are very hard to treat. 
For me, the secondary damage is what is keeping my rehab from working because everytime I try to do anything it flares up again. 
It is just a very frustrating situation......
I could be wrong, but I thought that was our situations anyway......
« Last Edit: January 03, 2006, 09:45:36 PM by shade »
July '05 (RK) - LR/debridement
Mar '06 (RK) - Open LR + Allograft w/OBI TruFit Plug + Fulkerson TTT
 Feb '07 (LK) - LR + Fulkerson TTT

Offline Heather M.

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Re: Only good for a week 'syndrone'
« Reply #7 on: January 03, 2006, 10:51:28 PM »
Shade,

I think you're right about finding the correct combo of great PT and OS with knowledge of your problem and getting things addressed before damage sets in.  Often there's no going back once you have OA, but you can certainly improve things and get your body to a new normal with good PT and treatment. 

And believe it or not, you can live in the middle of a city with 3 million people and tons of top notch OS's....and still have the ones you see miss the boat on diagnosis!

I guess my point in the first post (which I made in hurry as I watched the Fed Ex guy approach my door, hitting post without reading--sorry if it sounded cryptic or something! ;D  I just wanted to get to the poor man before the dogs did their best Cujo immitation!) was that if you have been diagnosed with problem A (whatever it is) and are working soooo hard doing all the right things to fix problem A...and you still have pain and symptoms...maybe Problem A isn't, in fact, the problem?  Unfortunately, with so-called 'anterior knee pain' or PFS, there are a lot of symptoms that overlap with other conditions.  So unless you are actually treating the right problem, you can set yourself up for so much pain and frustration.  You three (Shade, Boydy, Karen) are working SO hard, and it really sounds like you are doing all the right things for your particular diagnoses, but the positive results have eluded you.  I really don't think you guys are doing anything wrong; if the problems continue, it makes sense to look at whether the diagnosis was correct in the first place.  That may be an alternative approach--it's only logical, because I truly don't think there are issues with 'patient compliance' or the patients 'overdoing it' in this case.  You all have been so painstaking in your rehab, I just have to think you would have recovered or at least seen some good improvement by now.  If you haven't, then maybe the original diagnosis, and the treatment plans based on it, missed the boat?  This is what happened in my case, so of course it's the first thing I think of when I read similar situations.  That may or may not be true, but it's what comes to mind for me.  I was treated initially for tendinitis after my LR and chondroplasty surgery.  Months and months.  Then I was told that I would only get better if I could strengthen my quad and improve the kneecap tracking.  So that was my 'diagnosis'--mal-tracking and muscle atrophy.  And I did, indeed, have these.  But they were SYMPTOMS of a larger problem, not a proper diagnosis.  This is how I spent over five months rehabbing, doing exactly what Boydy described--starting one activity and doing okay with it, then over the next few sessions having the pain and swelling increase until I wasn't able to even walk, let alone continue with the new rehab activity. 

Then, after MONTHS of trying to build my quad and improve the tracking, I was told I had a torn meniscus.  Then a chondral lesion with a flap that was popping in and out of place, causing pain and swelling.  Then it was plica syndrome.  Then it was back to mal-tracking.  I rehabbed so hard, following the protocol for each of these diagnoses to a T.  But it just didn't work, and I didn't improve.  Then, my original surgeon wanted to take another look in the knee, because he finally believed that I was being compliant and realized I had a true mechanical problem going on in there that wouldn't be addressed by PT (it helped that my wonderful, sweet PT came to a couple of OS appointments in a row with me and helped convince the OS that PT just wasn't working).  As soon as he stuck the scope in there, it was immediately clear what the problem was.  So the months and MONTHS of PT and MRI's and x-rays and hands-on exams, we found out that my problem was something new that hadn't been considered before.  And I had a great surgeon--the team physician for our pro baseball club, saw basketball players and college level athletes, as well as the weekend warriors and other surgeons in town.  It wasn't that he was a bad doctor, he just missed my particular problem.  It happens.  And he even admitted to kicking himself after my exploratory scope, because it was so obvious in retrospect what the problem was--arthrofibrosis, in my knee.

Anyway, that's what I meant to say, instead of a cryptic little two sentence post.  Sorry it came out weird.  On the plus side, the Fed Ex guy left my property without a drop of blood spilled and with all his limbs attached, so the morning was not lost....anyone seen a 25 pound attack beagle at work?  It's entertaining, to say the least.

Heather
« Last Edit: January 03, 2006, 10:57:18 PM by Heather M. »
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
http://www.flickr.com/photos/hmaxwell

Offline shade

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Re: Only good for a week 'syndrome'
« Reply #8 on: January 03, 2006, 11:22:48 PM »
Heather,

Hi, understood what you said in your posts and I agree.  Think it is the frustration & the exasperation that a person feels after trying so hard and nothing seems to work.  
Oh well, hopefully we shall all find the way to the road of recovery - we know it is there - we just have to find it.
Here's to happy knee days ahead. 
Good to know that the FedEx guy did not get attacked by the 25 lb beagle.   ~Shade
« Last Edit: January 03, 2006, 11:45:29 PM by shade »
July '05 (RK) - LR/debridement
Mar '06 (RK) - Open LR + Allograft w/OBI TruFit Plug + Fulkerson TTT
 Feb '07 (LK) - LR + Fulkerson TTT

Offline KarenS

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Re: Only good for a week 'syndrone'
« Reply #9 on: January 03, 2006, 11:58:30 PM »
Heather, I pretty much knew what you meant, too. No worries. :)

In my case, I was never diagnosed with ITBS. My acupuncturist (who recently came over here from China and barely speaks any English) discovered the tightness in both legs within the first minute of examining me. And she didn't do the usual "tests" that OS's and PTs do to check for tightness -- she could feel it by pressing with her fingers! And they were VERY tight. My PT at the time was a little put out when I told him because he said he didn't think they appeared to be tight during his exam. Apparently he didn't do a very good exam! I ditched him quickly, because he seemed to dislike the fact that I was doing acupuncture at the same time, and he refused to treat me for ITBS. What a loser.  >:(

Pain in the ITB area of my left leg was the very first thing I felt, actually, even before I knew there was any real problem going on. I would get off the treadmill and get that tightness in the middle of my thigh. I'd sit and rub it and it would go away. So I didn't worry about it. Then, I was outside walking with my kids and as I pulled one leg forward to take a step, the lateral side of my knee would seize up into this painful ZING, and it took several seconds to relax. And I would be left limping, with knee pain for the next 12 hours. After many months of the weird off-and-on thigh tightness (which began to set into the right thigh, too), and a couple of instances of the "zinging" that left pain behind, I started getting the "irritated cartilage feeling" when I used the leg press and squat machines at the gym (which, I believe, was what damaged my ITBs to begin with...and I'm sure my LRs of long ago played a hand in setting me up for that, but I'm trying not to dwell on that!).

When I finally saw my OS when everything finally flared up at once and did not go away, he barely brushed over the ITB symptoms I described, just "yes"'ing me to death, and instead was very focused on the fact that my irritated cartilage never completely calmed down. He was baffled, his colleague who examined me was baffled, the OS he referred me to for a second opinion (the chief of orthopedics at New England Baptist Hospital in Boston) also was baffled, and this guy was still convinced (after 8 months of this going on) that all I needed was PT to strengthen my quads, and worst case scenario a scope to clean up the joint (as if that would solve the problem!).

That's when I started acupuncture -- and thank goodness I did, or my ITBs would still be stiff as pokers and I'd still be hobbling around! I definitely have made progress from where I was last May -- no more visible swelling, no more redness and heat, and no more weird feeling in my ankles (which, again, no one could figure out, but loosening the ITBs made it go away). I had gotten to the point where I was 95% better by the end of September...but I had been doing nothing to strengthen my quads or hips, so I reaggravated the condition when I went a little bit gung-ho with my activity level. I'm just pulling out of that backslide, and now I've discovered (yes, on my OWN) that there are adhesions in my vastus lateralis as well as other areas of my thighs and hips, that need to be massaged out, and I'm stuck doing it myself. I feel like no one (other than my acupuncturist) understands what's really going on here, and no one is listening to me. After all this time, I know my body a lot better than these so-called "medical professionals" -- when my ITBS flares up, that's when my knees bug me; when I get them to loosen, my knees feel fine. I'm wondering if the newly discovered adhesions are what's keeping me from getting the ITBs to loosen completely...? Ah, who knows. Even the new OS I saw last week isn't all that concerned with the ITBS. She recommended arch supports (although I barely pronate, and only with my right foot) and I'm going to be given a knee sleeve with electrodes that will stimulate my VMO. I'm glad she's trying *something*, and I know she has a point that I need to strengthen my quads, but THAT IS NOT THE ONLY PROBLEM, NOR DO I FEEL IT'S THE ROOT OF THE PROBLEM -- THE ITBS IS!!! Grrrrrrr. It's extremely frustrating! I really feel that if I could only find someone who can do myofascial release, between that and the acupuncture, I would be making quicker progress. My ITBs are just so reactive, I'm in a Catch-22 with the quad and hip strengthening. :(

Boydy, I am forever hijacking your posts!!! I'm sorry!  :-X (Vent over!)
« Last Edit: January 04, 2006, 12:14:37 AM by KarenS »

Offline Boydy

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Re: Only good for a week 'syndrone'
« Reply #10 on: January 04, 2006, 12:35:14 AM »
I can't beleive this, I have just written twice and lost the lot both times, ( the first time I wrote an epic dialogue and didn't press opst properly and lost it. So wrote a shorter version and my time ran out somewhere in the process, so lost that one too) DAMNED, I have been here for 1 hour and got nowhere)  :(
Oh I can't do this again, so will be very short this time.
Karen & Shade, thank you for your continued support and encouragement, we are all definately in the same boat, your right in all that you have said,.
Heather, I have writers cramp, there is so much that I wanted to say but, can't do it for now. Just wanted to express my thanks for your opinions, I haven't been ignoring your advice all these months, and I do listen, actually listening to you tell of your experinces scares me (probably frustrates me more like it) because your story does sound so much like mine, that is why I was so insistant with my last OS to follow up on Arthrofrobrosis , which he did with extensive xrays done at different angles (as you suggested to me that he should), then he assures me that I havent got it. (Not that I want to have it, but it would have made more sense to have found something like that to be hindering my recovery). So that leaves me a bit mistified as to what to do when, I have seen the two best knee OS in my State ( who tell me they know about Arthrofrobrosis)  they say I have maltraking and wasted quads ( get them built up and all will be well !!!)  Even went as far as investigating my quad weakness in other areas, but when that didn't turn up anything, went back to first plan, work harder at building those quads up and you'll get there. GGGRRRRR    See the frustration in all this !!    ::)
This is a way shortened version, but I can't type anymore, thank you all for your support and I value your opinions imensly.  By the way Heather, where do you find these amazing PT's that will go with you to a OS appointment. That is great service,  :o , so glad that you have had some positive outcomes, it has been a very long road for you but nice to know it can work out.
I'm going to go before I lose this one too.  ;D
Boydy
Arthroscope to repair meniscus tear, 10/04
Arthroscope for Lateral Release & repair another medial meniscal tear, 2/05
"Time heals all wounds"
Gosh I sure hope so !!

Offline Heather M.

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Re: Only good for a week 'syndrone'
« Reply #11 on: January 04, 2006, 02:12:28 AM »
Boydy,

Sorry you lost your posts...I have gotten used to hitting CTRL + A and CTRL + S to highlight my whole post and then save it.  I do it periodically, otherwise my hand brushes the touchpad and that is like hitting the 'back' arrow in Internet Explorer--bye bye post.

Anyway, I've got dinner sizzling on the stove, but wanted to say that I had five months of exams, x-rays, and MRI's...no one caught the arthrofibrosis.  No one.  I don't know why, but that's what happened to me.  Of course, Dr. S. caught it in about 25 seconds of hands on exam, but he knew exactly what he was looking for.

So I've not got a lot of faith in diagnostic imaging for some reason.  Wonder why...? 

And yes, your story sounds so familiar.  Just about every step of the way, actually.   I don't know how you have to proceed except to keep looking for an OS who will listen to you and not keep saying the same stuff again.  One who treats lots of complex knee cases, including arthrofibrosis, every year.  Who doesn't say "I have no idea why..." or "I've never seen anything like it..." or "You're just not trying hard enough...." or "I'm going to recommend another 25 months of PT...."  It's tough to find one of these doctors.  Almost as tough as finding a good PT...maybe more.  But just as important.

Karen,

I also had resistant ITBS...it was adhesions over the insertion point of the IT band.  All the releasing in the world didn't help, because it just tightened up again.  I finally had an open IT band release, and that helped a lot.

Yikes.  Chicken burning.

Heather
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
http://www.flickr.com/photos/hmaxwell

Offline Boydy

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Re: Only good for a week 'syndrone'
« Reply #12 on: January 04, 2006, 03:00:41 AM »
Hi Heather,   hope you saved that burning chicken,  :P   what with ferocious Beagles, and burning dinners, life can be so caotic.  ;)
Just thought I would let you know that I have bitten the bullet and have just got off the phone to yet another OS in our capital city. (He is the one the Neurologist told me was 'very good with tricky knees')  ::), anyway all I can do is try again, hey !  Only problem is his first available appointment is 7th June !!   :o   :o  If I didn't take that one it was another month after that. :(  Oh well, at least I have an appointment made, and will see how it goes until then. Am looking into Pilates or Yoga classes to help with all the tightness (especially the ITB)  but wouldn't you know, in this one hick town of mine, noone does it. Looks like, as usual ,I will have to learn from books, computers or videos how to do it myself. Thank god for modern technology.  :D  Enjoy your dinner, thanks for the reply's
Boydy
Arthroscope to repair meniscus tear, 10/04
Arthroscope for Lateral Release & repair another medial meniscal tear, 2/05
"Time heals all wounds"
Gosh I sure hope so !!

Offline misshilde

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Re: Only good for a week 'syndrone'
« Reply #13 on: January 04, 2006, 05:35:49 PM »
Wow, you guys sound just like I feel , and I really have no reason to whine..my surgery was only 2 weeks ago, but the ITB is was bothers me most...I'm doing pilates and that works great..using a foam roller on the floor and lay down on it and roll back and forth till the ITB feels looser...hurts like the dickens, but I feel much better later....besides I just wanted to say how impressed I am with you'all...when I go for my PT and doc appointment I'm gonna "quote" you...cause all the crap that's happening to me seams to be a "universal" knee thing....also my pilates girl had me start hamstring and stomach strenghtening too...it's all connected somehow....

hilde
born with bad knee
83 patella ligament pierced by iceicle
84 50%  hamstring rip
86 lateral meniscus tear
more dance 
99 menisectomy(finally)
more dance
patellar & quad tendontis
05 LR, bonespur removal, general clean out, stage 4 OA
oct 06 illiophoas release( hip ok) but knee still bad...

Offline KarenS

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Re: Only good for a week 'syndrone'
« Reply #14 on: January 04, 2006, 06:01:40 PM »
Hilde, you're right, it certainly all is connected somehow. Now, if only the narrow-minded OS's I've seen would believe that (or care). I know when my ITBs are tightening when I start getting soreness in my right hamstring. (I've stretched my hamstrings out quite a bit now, though, and it still happens to a certain extent.) Then the soft tissue on the inside of my right ankle gets sore. Then the lateral part of my right knee feels tight. Then the buckling happens. And so on and so on. One thing leads to another. But thankfully now I know the order of events, and I can nip the tightness in the bud before I get to the buckling stage!

And strengthening your core always helps with everything else in the kinetic chain. (So why am I not down on the floor doing crunches right now instead of typing?  ::) It is of my New Year's resolutions to get my ab strength back!)

Boydy: I'm so glad to hear you are pursuing another opinion (but I'm sorry to hear you have such a long wait!).

Heather: I will do absolutely anything to avoid further surgery, because I'm convinced that although it can be very helpful, it can also be the root of all evil. LOL! Seriously, though, I have seen the light at the end of the tunnel, so that gives me hope. And I hope to say goodbye to this tunnel FOR GOOD in 2006. Thank you for all your input, and any time you think I need a boot in the butt about doing something -- anything -- please feel free to speak up! :)
« Last Edit: January 04, 2006, 06:09:42 PM by KarenS »