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Author Topic: Patella Baja torture....  (Read 7762 times)

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Offline Heather M.

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Patella Baja torture....
« on: August 16, 2003, 10:55:50 PM »
This is for my fellow sufferers of scar tissue and patella baja, especially anyone who's been offered a fix...

Heather--I read in another post that you said your doctor was optimistic about the patella baja...but that's because he thinks yours is due to a quad tendon repair that wasn't up to snuff, right?

I've just been told by my wonderful doctor that the changes to my patellar tendon are permanent, and there's little to be done for me except to attempt an open salvage procedure to move the patellar tendon insertion point.  I'm a bad candidate for this because I have evidence of arthritis in all three compartments.  

And sadly, my doctor doesn't do this type of procedure, I would have to go elsewhere.  But he still thinks the actual scar tissue is causing a lot of my pain, as some people are BORN with patella baja and do just fine.  It's all a bunch of opinions, and my head is spinning.

The thought of an open TTT freaks me out, as I've had a lot of infection problems and heal very slowly.  I live alone, and being non-weight-bearing would be a huge burden--I'd have to have family members move in.  Gulp.

Anyway, I was wondering if your doctor was going to address your patella baja by tightening up the quad tendon repair?  I was told that I'm a very unusual case to have patella baja without any previous tendon issues.  Oh, lucky, lucky me.  I'm struggling, trying to figure out if I should exhaust my conservative options--i.e. do one more scope to remove the scar tissue and actually assess how much grew back--or cut to the chase and try to the open repair.  Or learn to live with it.

None of them are happy options.  And the open repair would be a 'salvage' procedure with very limited expectations for recovery.  Not something to get me excited about it....

Janet, does the above pretty much gel with what you've been told?

I'm really, really frustrated, and starting to believe I'll never have a normal knee again.  Or anywhere close.  I hate feeling like that, it feels like giving up.  But there is a certain amount of relief in accepting things.  I guess my head is just spinning....

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 Janet

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Re: Patella Baja torture....
« Reply #1 on: August 16, 2003, 11:07:22 PM »
Heather:

I'm so sorry you got bad news at your visit. I have been told that the changes to my patella tendon were permanent and the patella would always be baja. I have had two good OSs tell me that they would not do an osteotomy on me. Dr. W said that it would put the patella in a position where the back would rub on the femur. But in my case, they don't feel that the patella baja is really causing my huge problem. My huge problem is that the quads don't work well. And since they haven't worked well for four years, we are having a really hard time convincing them that they can and should work! It seems that the VMO is firing with my leg straight, but the quads in general aren't really working when my leg is bent. Also, my rectus femoris is not strong enough and is really hampering my gait. We are doing all the right things in PT, but so far, progress has been very slow. I'm not even back to what I was before this last surgery. That being said, the one thing I can say that has improved is that I don't swing my leg to the side as much as I used to. I think that's because the scar tissue is gone.

I totally understand you not wanting to go through a TTT! I always thought I would do anything to get my knee more normal. But at this point, even if it were an option for me, I don't think I'd do it. However, you have a lot more pain than I do. Wish I had some great words of wisdom for you, like you always have for the rest of us. Just keep asking your questions and doing your research, and hopefully someone will be able to help!

Janet
Torn quad tendon repair & VMO advancement 4/99, MUA with LOA 10/99, Patella baja and arthrofibrosis, LR & medial release & LOA 5/01, LOA & chondroplasty 6/03,TKR on 11/06, MUA 12/06. From perfect knees to a TKR in 7 years, all from a fall on a wet floor...and early undiagnosed scar tissue.

Offline Heather M.

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Re: Patella Baja torture....
« Reply #2 on: August 17, 2003, 12:22:23 AM »
Janet,

Like you, I'm better at many things than before the surgery.  I'm walking almost normally, my knee doesn't catch...but the pain is just as bad.  If not worse, and it was pretty bad before.  Most days, when I'm walking, it feels like there is a giant nail being driven into the shinbone right below the knee.  Knowing it's my kneecap striking is not a comfortable feeling.

I guess my frustration is that three months ago I was doing a lot more than I am now.  I tasted some improvement in function, then slid downhill.  Probably my fault because I let the pain overrided what I knew was a very real need to continue with the PT.  But it got to the point that I couldn't work, and I have to make a living.  It's so complicated.  I really don't know what to do, so I'm basically in denial.  It's not just a river in Egypt...hehehehehe.  I've got a manuscript to deliver in the next few weeks, so I'm focusing on that instead of my knee and what we will do. I'm sure I'll pay the piper in the fall, but it's not like I have a lot of choices.

Take care and keep at the PT--it's all we can do.  If your doctor doesn't get with it on pain control, and you find youself avoiding activity because it causes pain...based on my experience, I'd advise that you get the pain under control however possible and keep doing the PT.  I wish I had, but I'm not going to beat myself up on the subject.  Just wish I'd done things a little differently and gone on a full pain control regimen *before* I'd lost all the function....

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 ~*Heather*~

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Re: Patella Baja torture....
« Reply #3 on: August 18, 2003, 02:45:33 AM »
Janet,

I was wondering if your OS ever considered your quad isn't strengthening because of the baja? I was told that my quad will never gain any muscle because with the extensor mechanism thrown off I could not do a proper contraction. I had 2 inches of atrophy when my imobilizer came off last october (after the quad tendon repair) and I still have it to this day.  I decided to challenge their thoughts and have been faithful to working it out.  I have regained nothing.  It's so sad. That is why I am considering another surgery.

Heather,

This new OS I saw feels the baja is the first issue and the sloppy repair would be the second.  He does not agree with the other OS who said just redo the quad repair.  The new OS feels that you can NOT determine laxity of the patella tendon through my MRI, therefore is going to do a lenghtening procedure.  I see him again on the 25th to discuss procedures. He said there were a few to chose from. He said the absolute worst case scenario would be a cadaver graft...may not go through with it if that's the option. I don't know a lot about that, but it sounds horrible.

I know that there are huge risks with surgery and I could even make things worse, but I HAVE to try.  I need to try.  My knee rubs and locks.  I can't stand it.  It's horrible.  I will let you know the procedures when I find out. I am sure I will have tons of questions for you and Janet.  

Thank you all for all your help!

Heather
 
R knee-2 LR's, 1 ITB Release. L knee-LR/medial plication (2/02).Fell postop 3/02 & ruptured quad tendon.Quad tendon repair (8/02).Led to Patella Baja.TTT w/ Quad tendon reefing 9/03.Screw removal 8/04

Offline ls

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Re: Patella Baja torture....
« Reply #4 on: August 20, 2003, 08:24:31 AM »
Ladies,
I am one of the few success stories I know of in this area so I thought I'd share my progress, although due to good advice I got on this board my problems were adressed early. I had severe patella baja and total VMO atrophy, I had an extensor lag of 35%, lots of scar tissue and very poor function. In May I had scar tissue removal and was put in a cpm machine 24 hours a day for a month. I was in agressive pt within days of surgery. My therapist has been very innovative in finding exercises that will work my non existent quad. My patellar placement has returned to normal and my quad atrophy is greatly improved, my extensor lag is down to 10%. I still have to be very diigent about pt, my therapist still pops free adhesions from my patellar tendon, but I am looking at a full recovery. The patella baja was definetly caused by the scar tissue and with the low placement the VMO has no hope of firing. I have heard of people who's VMO's tear because of the patella baja and not the other way around. I don't know how long you all have had the poor patellar placement but there is hope of improvement without the extreme surgical measures you are talking about. I would also think that extensive surgery and immobilization following would be the worst thing you can do with someone with scar problems.
Let me know if I can be of any help and hang in there,
Laurie
12/02 lat. release, chrondoplasty. Post-op- bleed, arthrofibrosis, patella baja, extensor lag. 5/03 debridement, chrondoplasty, closed manipulation, cpm. Post-op quad atrophy, extensor lag.

Offline ~*Heather*~

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Re: Patella Baja torture....
« Reply #5 on: August 20, 2003, 04:01:57 PM »
Laurie,

I am so happy that you found relief with patella baja.  You mentioned yours was addressed early and I believe that is why you were about to fix it so well. The ladies here have their patella tendon scarred down so there is no mobility for the patella to correct its position.  There has also been damage to the groove in which the patella tracks.  Scar tissue is not what is keeping the patella in the wrong location it is the physical changes that happened within the knee. Was this the same for you? I also believe that we have all had this for quite awhile.  You were so lucky to have it addressed so early, I only wish I knew what to look for so many months ago  :'(  

Heather and Janet,

I'm sorry if I have your condition wrong, but that is what I thought was going on. I'm pretty sure I have it right though. I know there are other problems as well, but I was focusing on the baja only.

In my situation, I had a quad tendon rupture that went undiagnosed for 4 months.  I finally had surgery to correct it one side effect from not repairing it right away is baja.  They do not believe that scar tissue is holding mine down or the problem at all.  They feel the quad repair was done poorly and because I didn't notice the baja until my knee started locking and the patella tendon had a chance to tighten down. Almost a year later! One OS said there was laxity in it (that would be GREAT) but another said you can't tell that from an MRI.  So who knows at this point.  

Were you ever told of surgical options? Any info you can give would be great. Thanks again!

Heather
R knee-2 LR's, 1 ITB Release. L knee-LR/medial plication (2/02).Fell postop 3/02 & ruptured quad tendon.Quad tendon repair (8/02).Led to Patella Baja.TTT w/ Quad tendon reefing 9/03.Screw removal 8/04

Offline ls

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Re: Patella Baja torture....
« Reply #6 on: August 20, 2003, 06:54:14 PM »
Heather,
Mine was also caused by the scarring down of the patellar tendon and scar tissue filling in the groove under the knee cap. I think we're talking about the same problem. But I did have a very rapid onset of scar tissue after a bleed in the knee following surgery. I then had agreesive treatment within six months of onset.
Good Luck Everyone,
Laurie
12/02 lat. release, chrondoplasty. Post-op- bleed, arthrofibrosis, patella baja, extensor lag. 5/03 debridement, chrondoplasty, closed manipulation, cpm. Post-op quad atrophy, extensor lag.

Offline ~*Heather*~

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Re: Patella Baja torture....
« Reply #7 on: August 20, 2003, 06:58:52 PM »
Thank you so much! I see my OS on Monday the 25th. I will definitely discuss this with him. I surely hope there is a chance for me.  I'm so happy you found relief this is such a miserable condition isn't it?  Thanks for the success story, I love hearing them. It gives me hope to hold on to.  There is a section for success stories (if it's still there) maybe you could post there too?  Thanks again for posting!

Heather
R knee-2 LR's, 1 ITB Release. L knee-LR/medial plication (2/02).Fell postop 3/02 & ruptured quad tendon.Quad tendon repair (8/02).Led to Patella Baja.TTT w/ Quad tendon reefing 9/03.Screw removal 8/04

Offline Heather M.

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Re: Patella Baja torture....
« Reply #8 on: August 20, 2003, 11:56:21 PM »
Laurie,

You are the poster child for the best approach to address patella baja and arthrofibrosis--quickly and conservatively through arthroscopy and specialized PT.  I strongly agree with Heather and urge you to post in the success stories section--it is cases like yours that keep us going!  Every paper I've read on the topic says that patients who are successfully treated within 6 months of onset of patella baja have good to excellent results, many with return to full activity.  However, the deciding factor for a bad outcome was the contracture of the patellar tendon.  Not just being scarred down in place, but an actual physical change in that tendon to a shortened, fibrotic mass.  In those cases, the long-term results are often "sub-optimal" in that great, understated medical language.  Everything I read, and every doctor I talk to, indicates that these physical changes are permanent--very much like a visible scar on the skin from surgery.  If you can get the kneecap back in the right position and the quads working well again to keep it that way BEFORE the patellar tendon contracts, you are in great shape.  

That sounds like your case, and I think that's just wonderful.  I'm really jealous--but we did everything right after my lateral release and bleed in the joint caused this problem.  Within 5 months of the LR surgery I had an arthroscopy to clean out the joint and free up the kneecap.  Unfortunately, I had complications (infections) that resulted in more scarring.  My kneecap has now been in the baja position for over 18 months through 7 procedures.  But we're still trying, and at this point I'm going to stick to conservative means for one more shot, which will be this fall. If that doesn't work, then I have to think about accepting things or moving on, because so far my contracted patellar tendon has resisted every effort--acupuncture, surgery with one of the best knee specialists in the world, specialized PT (up to 2X/day post-op), CPM 24/7 for 4 weeks post-op (once I had it for 7 weeks), weight-bearing, non-weight-bearing, manipulations, insufflation, cortisone, oral steroids....if I DO decided to move on to an open procedure, I feel very confident that it will be as a very last resort.

Some doctors, in the case of a contracted patellar tendon that resists conservative means, advocate an open procedure to actually move the insertion point for the tendon and compensate for its shortened length. The doctors I've seen have proposed a Delee osteotomy, modified Fulkerson, or modified Maquet procedures.  The objective is to move the insertion point of the patellar tendon proximally (closer to my quad) and anteriorly (to elevate the kneecap up out of the joint).  It may also be necessary to move the insertion point medially to compensate for the damage in the lateral compartment of my knee.  I also have a lot of damage to the back of my kneecap, which is probably another reason these doctors are proposing the various TTTs to help unload the kneecap.

(Cont'd)
« Last Edit: August 21, 2003, 12:07:07 AM by hmaxwell »
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 Heather M.

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Re: Patella Baja torture....
« Reply #9 on: August 20, 2003, 11:57:58 PM »
(Cont'd)

It is correct to say that most doctors feel strongly that an open repair will cause a great deal of trauma and probably result in further scar tissue formation.  That's why all the doctors I've spoken to have emphatically recommended against any kind of tenodesis (tendon lengthening procedure) or replacement of the patellar tendon with a graft from my own body or a cadaver.  The doctors I've spoken to said that such a procedure would result in additional scarring that would cause the new or lengthened patellar tendon to contract and become fibrotic again (to say nothing of rejection issues and infection, which I have had a serious problem with in the past).  Additionally, I think the fact that I have such deep lesions on the back of the kneecap steers them away from recommending the patellar tendon lengthening/replacement route--it might still leave me weight-bearing on damaged portions of the patella.  

The doctors who have proposed an osteotomy or TTT for my case have been very frank that I will probably require further arthroscopy to remove the scar tissue from the open procedure.  Their approach was to fix the mechanical issues (shortened patellar tendon and damaged kneecap) and then work on any additional scar tissue.  I'm half tempted to just do the open repair and forget further conservative interventions...but my current OS has only done one scope and he did warn me that it would probably take at least two before we could say with confidence that arthroscopic lysis of adhesions was not the way to go with my case.  If I do sign up to have someone surgically break my leg, I want to be confident that I've tried EVERYTHING else first.....

Anyway, these are just my opinions based on the unique aspects of my knee situation, research, and discussion with several knee specialists. What works for me may not work for other people.  And if we did go for an open procedure in the future, it would be very much a salvage operation, with limited expectations.  Perhaps some pain reduction and some improved function.  I'm holding out for better odds, quite frankly.  But I do want to stress that other people have very different situations.  My case is somewhat rare in that I didn't have any ligament or tendon repair that precipitated the arthrofibrosis and patella baja--I had a lateral release with a bad bleed afterward, and then 2 severe post-op infections after efforts to address the patella baja.  I'm thinking I have bad surgical karma.....

Hope this point of view helps, I think the very best thing we can do is ask questions, talk to others who have this condition, and keep supporting each other.  And remember that every doctor's recommendation is based on his or her opinion and interpretation of medical studies.  I had several doctors tell me very earnestly that I needed to just learn to live with this problem, others who said it would never get better and only get worse without treatment.  Each side really believes in what they are proposing.  You just need to educate yourself and find a proposal that is liveable for you.  Talk about what your expectations are--reduced pain, increased function, quality of life, athletics....we all have different needs and these have to be taken into account as well.

Thanks to everyone for your contributions to this debate, I have a lot to talk about with my doctor.

Heather
« Last Edit: August 21, 2003, 12:10:04 AM by hmaxwell »
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 ~*Heather*~

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Re: Patella Baja torture....
« Reply #10 on: August 21, 2003, 12:12:55 AM »
Heather M,

Thank you sooooooo much for that post.  You really gave me something to think about. I know that our cases are not equivalent but still I took some very strong facts away from what you wrote. I thank you for that.  You explained patella baja better than the 2 OS's I have seen for it!  Pat yourself on the back.  I understand so much better now.   :)

I actually took notes while reading that so I can bring them to my OS appt.  You really don't know how crucial you are to this board. Thanks so much!

Heather
R knee-2 LR's, 1 ITB Release. L knee-LR/medial plication (2/02).Fell postop 3/02 & ruptured quad tendon.Quad tendon repair (8/02).Led to Patella Baja.TTT w/ Quad tendon reefing 9/03.Screw removal 8/04

Offline Heather M.

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Re: Patella Baja torture....
« Reply #11 on: August 21, 2003, 12:16:43 AM »
Heather,

I saw your question in the other thread and thought I'd post here.  I flip flop almost daily, but think at this point that I'll opt for further conservative treatment (i.e. another arthroscopy in the fall).  I'm so unbelievable freaked by the idea of an open procedure--I heal so slowly, I live alone so the non-weight-bearing would be impossible, I'm trying to jump-start a new career in the next year....lots of reasons why a scope is a better option.  Including that my wonderful surgeon said if it were HIS knee this is what he'd do.  I reallly trust him, and he's been very honest about expectations (guarded optimism) so....

Anyway, if you go the patellar tendon lengthening route, I would just urge you to ask all the questions Janet and I asked--what is this going to do?  Good, neutral, and bad outcomes?  Worst case scenario?  What is he going to do to prevent scarring from doing the same thing to your new patellar tendon?  What is his PT protocol, CPM, medical interventions (like cortisone)?  How does he feel about alternative treatments like acupuncture and myo-fascial release?  What about pain management?  How long will you be laid up?

Please keep us posted on your discussions with the doctor, I can't wait to hear what he has to say.  Everyone here has steered me away from tenodesis and tendon grafts, but I had a different underlying condition to start with.  I think they also feel it's necessary to address that, too.

Heather
« Last Edit: August 21, 2003, 12:17:38 AM by hmaxwell »
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 Janet

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Re: Patella Baja torture....
« Reply #12 on: August 21, 2003, 04:00:09 AM »
Laurie:

Glad you got the good care you needed and were able to correct your baja! That's the first time I've ever heard of such good results!

I am not exactly sure when my baja occurred, but guess it was after my second surgery. But it wasn't diagnosed until 18 months later when I changed doctors. By then, my patella was completely scarred down (infrapatellar contracture) and the change in the tendon was permanent. I had additional surgery, and was in PT immediately, continuing for nine months. However, scar tissue returned, leading me to yet another doctor and another surgery. So the changes to the patella tendon itself (as HeatherM said, the tendon has shortened and thickened) will not change at this point. Today I asked how long it will be until we can be sure the scar tissue won't regrow again. Unfotunately, the answer wasn't encouraging. There is the risk of it returning until you get full ROM and normal function. Since I don't think I'll ever have either of those, I guess I'll always be at risk. Scary!

One of the things we are dealing with now in PT is that I can feel the tightness starting in my quad tendon and going all the way down my patella tendon into my tibia. It feels like it's pushing my patella back into my knee (which is exactly what is happening). This causes a lot of pain through the tendons and on the back of the patella where I have the chondral defect. We keep working on ROM, but this continues to be a problem.

I've been told my knee will never be normal (duh!) and I won't regain full quad strength, but they are still hopeful that I will gain more function and have less pain. My goal is to walk with a normal gait at a normal pace with little pain. They say that's a reasonable goal, but I'm losing faith.

Janet
Torn quad tendon repair & VMO advancement 4/99, MUA with LOA 10/99, Patella baja and arthrofibrosis, LR & medial release & LOA 5/01, LOA & chondroplasty 6/03,TKR on 11/06, MUA 12/06. From perfect knees to a TKR in 7 years, all from a fall on a wet floor...and early undiagnosed scar tissue.

Offline Janet

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Re: Patella Baja torture....
« Reply #13 on: August 21, 2003, 04:07:35 AM »
HeatherM:

I have questions for you. How long was it after your last surgery before you started to feel like you were making some progress? Did your pain improve or did PT just irritate your knee even more? I'm getting discouraged because it's been 8 weeks and I just don't see any improvement from before surgery and my pain is worse than before surgery. If I don't get some better pain control from Dr. W I'm going to take your advice and find a pain management doctor. I think you were right when you said that surgeons just don't know how to deal with chronic pain.

Janet
Torn quad tendon repair & VMO advancement 4/99, MUA with LOA 10/99, Patella baja and arthrofibrosis, LR & medial release & LOA 5/01, LOA & chondroplasty 6/03,TKR on 11/06, MUA 12/06. From perfect knees to a TKR in 7 years, all from a fall on a wet floor...and early undiagnosed scar tissue.

Offline Heather M.

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Re: Patella Baja torture....
« Reply #14 on: August 21, 2003, 04:09:47 AM »
Janet,

My heart just breaks reading your post.  You and I have been through so much with these darned knees and latin terms....infrapatellar contracture syndrome is a nightmare.  

I was just wondering how Dr. W feels about acupuncture and myo-fascial release?  It's a proven fact that acupuncture helps reduce tension in ligaments and tendons, and since you're still in the 'supple' phase for scar tissue, it's something to think about.  Myo-fascial release is used in patients who have curved or palsied limbs due to things like burns, stroke, etc.  It is also proven to restore suppleness....

And to answer your question, it was at least 3 months after the surgery before I felt like I was getting anywhere.  My pain levels were much higher after the surgery, and I don't know where I would have been without pain management.  OS's really have no idea what to do with chronic pain, IMHO.  Also, if PT is irritating things, you should go back to the basics until you reach a point when your are not increasing pain and swelling....at least that's what Dr. Steadman's PT protocol had me doing.  Some days I'd go to PT only for e-stim, SLR's, and wall slides.  Others I'd do the bike and all kinds of stuff.

I'm just racking my brain trying to think of something that might help.  Keep the faith--remember how long I was in the 'why the hell have I done this to myself again' funk after my Dec. surgery.  We're all here pulling for you, hopefully you can feel the 'let freaking go, rotten scar tissue' vibes from where you are.

Take care.

Heather
« Last Edit: August 21, 2003, 04:28:53 AM by hmaxwell »
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