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Author Topic: Arthrofibrosis success  (Read 25270 times)

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Offline bear

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Arthrofibrosis success
« on: May 13, 2006, 06:00:07 AM »
I haven't posted for a few months, so I wanted to report on my progress and success to date.  The information on this board really saved my knee and my active life! 

On 8/1/05 I completely tore my ACL playing indoor soccer.  The initial MRI showed a possible tear of the MCL as well.  Four days after the surgery I was scheduled to go to New Hampshire for ten days for my honeymoon.  So I was given on hinged brace and crutches, told to set the brace to 30 degrees flexion, and put no weight on my leg until I returned.  My knee was very swollen, and I did my best to RICE while on vacation. 

My first requests to see an OS came back with a date in September!  I knew, vaguely, that I was supposed to do physical therapy, but I had been given no instruction as to what and how and why.  Unemployed at the time, I said I'd see any OS whenever one was available and whoever it was (I have an HMO). 

Sixteen days after the surgery, I finally got into an OS.  He said I had, indeed, torn the ACL and the MCL.  He recommended PT, beginning weight bearing, and wearing the brace for 8-10 weeks until the MCL healed.  I was unable to get into a PT until 8/24, over 3 weeks after the injury. 

At that point, I had barely put any weight on my leg and certainly had done no PT, not having any idea what I was supposed to do, what was okay, what wasn't, what pain was okay, etc.  Once I got into the physical therapist, he set me on the usual exercises, including quad sets, straight leg raises, and what not.  I was terrible at them at that point, and could only bend my knee to 40 degrees. 

So, I went to therapy once a week for a few weeks, until I got in for a second opinion on my knee 9/15.  I didn't exactly trust the first OS, and wanted to see the best doc in the program, but she wasn't available for over a month. 

This new OS confirmed the torn ACL, but said I had not torn the MCL, and I could ditch the brace.  At that point I was off crutches.  My knee would bend to ~60 degrees, but was incredibly painful beyond that.  I got set up with a much better therapist, and I really liked the OS.  The new PT explained to me I had been shown the exercises incorrectly (wonderful) and demonstrated everything correctly.  They were both dismayed at my lack of flexion, and generally agreed the original PT was terrible, and that I was a "stiff" person.  Arthrofibrosis was very briefly mentioned. 

I saw the new PT again in 3 weeks, then 2 weeks after that, then a month after that.  She didn't seem to want to see me more than that, and felt I could do everything at home.  But despite my dilligence and determination, I could NOT get my knee to bend.  And I think I'm a fairly tough, athletic person, having played numerous sports my whole life, and played soccer through college. 

At one point the PT suggested it was a saphenous nerve problem.  Which, when I read about that, I took to mean it was all in my head.  Again, great.  In the meantime, as any of you who have had a frozen knee know, life was an extreme pain in the butt, very furstrating, and I began to wonder if I would ever get my normal life back.  Stairs were slow and difficult, I couldn't walk without a limp (I did not have full extension, or hyperextension), and I couldn't even step over a small item on the floor or on a sidewalk without swinging my leg out.  Sitting with a knee stuck straight out sucks, too, especially on your hip.  I went to the gym regularly, tried swimming and water exercises, nothing worked. 

Anyway.  By mid-November I'd had it and scheduled another appointment with the OS I liked so much.  And I'd been reading religiously on this site about arthrofibrosis (what I suspected to be my problem) and the window of opportunity.  But the appointment got canceled (she had emergency surgery) and was re-scheduled for a MONTH later, her earliest availability.  I called back numerous times and could not get in earlier.  It was scheduled for 12/15 at the end of the day, and on the 16th she was going on vacation for 2 weeks.  Not good. 

In early December I went for an outside opinion (paying out of pocket) and this doctor immediately said I had a very serious problem on my hands and had to have immediates surgery.  He consulted with his two partners, and none of them had seen a case like this in many years.  Woo-hoo.  He diagnosed me with arthrofibrosis, but I already knew this. 

I wrote my provider and my OS, requesting an immediate appointment or a referral out, and still no response.  For many days.  At which point I made an appointment with Dr. Eakin, based on his recommendations on this site and proximity to me. 

Just as I was booking a plane ticket to CA, my OS's assistant called and said she'd see me that afternoon.
ACL complete tear
MCL partial tear
Soccer, 8/1/05

Offline bear

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Re: Arthrofibrosis success
« Reply #1 on: May 13, 2006, 06:10:50 AM »
More...  sorry, long-winded. 

When I finally got into my OS, she agreed I had a major problem and we scheduled surgery for the next week, 12/14, before she went on vacation.  I was terrified, wondering if I was doing the right thing.  Did I need to see a specialist?  She was very competent, I liked her a lot, and she made me feel comfortable.  And I trusted her years of experience.  So I went with it. 

I had an MUA with a lateral release on 12/14, and a shot of steroids/cortisone.  I was still unemployed at that point, so I had plenty of time to do the therapy.  I used a CPM for 3 weeks at night, and most of the day for the first week.  My living room floor was my bedroom.  I went to the gym three times a day, and did the exercises religiously, and carefully.  Patellar mobilizations every two hours, lots of ice, CPM, quad sets, straight leg raises, everything else.  I went to PT 3 days a week.  I was NOT going to let my knee scar up again no matter what, although I was terrified it would the whole time. 

I had it drained after two weeks (at my request).  After 3 days, my ROM was to 100 (!!!).  After 5 days, 117.  After a week, 120!!!  I wasn't sure I'd ever go past 90 again.  I biked in my basement every day, twice a day, too. 

I've gone on long enough, but will say that by March, I had full ROM (143), full extension and hyperextension, and "graduated" from PT.  I bike 5 miles to work, and am slowly jogging again.  My knee feels great, and I have had no problems since the surgery. Last week I biked to work twice, jogged (on and off) for ~3 miles, and then did a 5 mile hike on the weekend.  I was a little sore the next couple days, but generally everything is great. 

So, thanks to the posts and advice on this site (particularly all the various warnings about what worked and didn't work for people) I have a normal knee again.  The only difference is I still have a completely torn ACL (I'll deal with that some day, although I've never had instabilty since the injury), a couple small scars, and a huge lump of scar tissue that is plainly evident, but doesn't affect my daily life. 

And for whatever reason, an MUA worked for me and wasn't the horror I'd read about.  I'm still scared the scar tissue will come back someday, but I hope not!!
ACL complete tear
MCL partial tear
Soccer, 8/1/05

Offline celinenj03

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Re: Arthrofibrosis success
« Reply #2 on: June 04, 2006, 01:53:42 AM »
I am glad to read you got your success. ;D ;D I just want others to know (you wouldn't believe the people on this board who are freaked out by arthrofibrosis a very rare and VERY PREVENTABLE condition) that you were immobilized for 2 weeks (an ancient practice for ACL reonstructions nowadays) and that is most likely the reason you developed arthrofibrosis in the first place. I am glad you were able to find a more qualified surgeon to help you out with this most recent procedure.
Terrible Triad - 1/16/06 - Basketball
3/15/06 - Scope/Cleanout of to achieve full ROM
5/3/06 - Surgery-ACL Reconstruction-Allograft
9/12/07 - Large Loose body removed;Grade 4 Lesion on LFC
9/17/08-Microfracture, Lateral Release (all right knee)

Offline hottubpam

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Re: Arthrofibrosis success
« Reply #3 on: June 14, 2006, 02:55:19 AM »
Celine,

I agree that arthrofibrosis is rare, however there are at least 20 active posters on this bulletin board that are currently dealing with this insidious condition.  I just want to make sure other readers are aware that it DOES happen and is NOT always a "very preventable condition" as you allege.

If you could spend just one day walking/hobbling/crutching in the shoes of someone with severe recurring arthrofibrosis you might be a little more empathetic towards those of us that are "freaked out by arthrofibrosis".

Pam
ACLR, Menisectomy 3/04; ACL resection, Cyclops lesion removal, LOA & MUA 10/04; LOA, LR & AIR 12/29/04;#4&5 surgery on 2/9/05 & 3/2/05 debridement, irrigation & lavage, portal closure; #6  LOA, AIR, LR & other releases 12/9/05; #7 surgery 1/18/06 portal closure, lavage, debrid etc #8 skin graft 3/06

Offline celinenj03

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Re: Arthrofibrosis success
« Reply #4 on: June 14, 2006, 12:52:55 PM »
Arthrofibrosis is very highly preventable. Most cases, even of those on this board were preventable. It wasn't the individual's fault but rather different surgical opinions for post-op care (many/most were casted or immobilized in some way, or operated on too soon after injury, etc. That is the point I am making. There is no need for people to read and get freaked out if they know all the facts first. There is a very good protocol one could follow to almost eliminate the risk of Arthrofibrosis altogether.

By the way, I am curious about something. This has been bugging me. I have 2 knee books sitting on my shelf right now. One is called, "Heal Your Knees" by Dr. Robert Klapper, the other is called "The Knee Crisis Handbook" by Dr. Brian Halpern. Both are excellent reads!

Neither of these very well respected reads, mention Arthrofibrosis. Is this because it is so rare a condition? I am asking this sincerely. Why not a single mention of it for readers who only buy these books if they have knee problems.

I think the incidence of Arthrofibrosis is extremely rare. And I just want to put it in the proper perspective for the thousands of readers who visit this site.
Terrible Triad - 1/16/06 - Basketball
3/15/06 - Scope/Cleanout of to achieve full ROM
5/3/06 - Surgery-ACL Reconstruction-Allograft
9/12/07 - Large Loose body removed;Grade 4 Lesion on LFC
9/17/08-Microfracture, Lateral Release (all right knee)

Offline Graceful1

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Re: Arthrofibrosis success
« Reply #5 on: June 14, 2006, 01:11:04 PM »
Many valid points here, however, it should be noted... immobilization after some surgical procedures is often necessary; and shouldn't be looked upon as foolhardy or poor judgment by a surgeon.

Thanks.
« Last Edit: June 14, 2006, 01:20:17 PM by Graceful1 »

Offline celinenj03

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Re: Arthrofibrosis success
« Reply #6 on: June 14, 2006, 02:29:26 PM »
Yes, that is true of some procedures. I guess I am thinking mainly ACL Reconstruction since that is what I had done. Thanks for the clarification.
Terrible Triad - 1/16/06 - Basketball
3/15/06 - Scope/Cleanout of to achieve full ROM
5/3/06 - Surgery-ACL Reconstruction-Allograft
9/12/07 - Large Loose body removed;Grade 4 Lesion on LFC
9/17/08-Microfracture, Lateral Release (all right knee)

Offline favouritesearcher

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Re: Arthrofibrosis success
« Reply #7 on: June 15, 2006, 10:42:01 AM »
Bear,

I'm glad that you've posted your story because there's a tendency for arthrofibrosis success stories to be glossed over as if to say that if you've got better, then you didn't have genuine arthrofibrosis, and I think that you did have a severe case if you had flexion which was that limited.  The statistics also show that 80% of people with some form of arthrofibrosis who are treated within 12 months by a specialist make a good to excellent recovery.

Although it is "highly preventable", by the time most people know the correct rehab it's usually too late to apply it because their knee is too stiff, and it isn't terribly useful to know that it could have been prevented, it just has the effect of increasing sufferers' regret over what they have lost because not having the use of your leg is very upsetting.  I think that anyone with a dis-functional kne, whether caused by arthrofibrosis or something else, is really suffering.  Also, even the specialists say that it is very difficult to treat so I think there is reason to be concerned, but not over-alarmed.

Probably the two books don't mention arthrofibrosis because once it has been established for a while, it can only really be treated by a surgeon.

What Heather M and others on this site tell you is in general very good advice, and I too would credit her and the others with letting me know enough and be confident enough that something had gone awry to do something about it instead of just sitting there and hoping for the best:
1.  Think about getting a better surgeon.
2.  Know the correct rehab, and that pushing the knee is not always better.
3.  Get treated sooner rather than later - it is important.
4.  Know that something needs to be done.

I think that arthrofibrosis is more prevalent than suggested.  I know three people off-board who have it.  Also all the surgeons I spoke to knew about it, but not necessarily what to do.  I would say that the severe recurring arthrofibrosis is what is so rare, and it seems to be linked to other disorders.  I think that there are three types of arthrofibrosis:
1.  The type which is minimal (such as a cyclops lesion) and will go when the problem is corrected.  An example would be someone like SkiRob.
2.  The type where people produce more scar tissue than normal (whether their body over-produces it, or it is allowed to grow by immobilisation) which can be very difficult to get better because of the extent of the adhesions.  I would also include people who have recurring arthrofibrosis which has been caused by consecutive arthrofibrosis-causing incidents (eg ACL reconstruction which has gone wrong, followed by infection during a procedure done to get rid of the adhesions).  I think that these people can get better if treated correctly and before any severe damage has been done.  These people probably have had very poor surgeons.  An example would be myself, though I only have 60% of the function that I had before.
3.  The type where people produce huge amounts of scar tissue regardless of what is done, and I think that these are the people who have the genetic problem and comprise the 1%.  Maybe Jaci would be an example.

I was interested to note that you'd had a lateral release.  This tied in with something I read in a presentation that Dr Steadman made, where he said that in almost all cases of ACL reconstruction, a lateral release was necessary to compensate for the likely shortening of the patellar tendon (slide 14 of attached transcript).  He also talked a little about a combined MCL/ACL tear (slide 4) but I've also read about it elsewhere.

http://video.medscape.com/pi/editorial/cmecircle/2004/3069/flash/steadman/transcript.html

Thanks again.

John
Mar 04 - Tibial spine avulsion fracture (skiing). Open surgery to fix, 1 screw.  Max passive ROM 20-75, active ROM 30-45
Aug 04 - Diag. severe arthro. Scar tissue clean up (LOA, removal of scar tissue).
Feb 05 - Discharged from surgeon's care. ROM 3-125.
Apr 05 - Discharged from physio. Same ROM

Offline celinenj03

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Re: Arthrofibrosis success
« Reply #8 on: June 15, 2006, 12:53:33 PM »
Dr. Steadman automatically does Later Release on his ACL reconstructions? Is that only on the patellar bone to bone grafts? I don't believe the patella tendon shortens on every case of reconstruction. Very interesting though. I read the article and it really proves how heavily success weighs on the surgeon. There is so much room for error. I remember when searching for a surgeon my brother gave me good advice. Get someone who specializes in ACL reconstruction and does thousands of them. There is no 100% guarantee of course, but at least you are giving yourself a much better success rate right from the start.
Terrible Triad - 1/16/06 - Basketball
3/15/06 - Scope/Cleanout of to achieve full ROM
5/3/06 - Surgery-ACL Reconstruction-Allograft
9/12/07 - Large Loose body removed;Grade 4 Lesion on LFC
9/17/08-Microfracture, Lateral Release (all right knee)

Offline Jaci

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Re: Arthrofibrosis success
« Reply #9 on: June 15, 2006, 04:08:14 PM »
Hello,

For everyone's benefit here's the statement made by Dr. Steadman so you know the context in which he's discussing lateral retinaculum decompression (release).

"Slide 12. Another point on the patellar tendon is that if the rehabilitation is not successful, you will get joint stiffness. Another concern after bone-patellar tendon-bone is anterior knee pain. Some people say it is 90%; some people say it is 40%. In our series it's very small. It's less than 2%.

Slide 13. The reason you would get anterior knee pain is scarring and stiffness in the joint. What we've identified as the risk factor is that unless you do patellar mobilization (manually moving the knee cap and the knee-cap tendon) you're going to have tightness in the joint and scarring between the patellar tendon and the tibia, and that is the end for the articular cartilage in the trochlea and the patellar tendon. This manual mobilization, in addition to early range of motion, is the thing that can avoid the arthritis 10 or 15 years from now.

Slide 14. In terms of the solution to anterior knee pain, I think it's important to the bone graft defects. We use tunnel drillings and we pack those into the defects, so one possible source of pain would be an unfilled defect. Patellar mobilization, as we mentioned earlier, is another super important point, and it has to be manual mobilization. I don't think you can do it any other way. Another thing we do is a loose partial-thickness closure of the patellar tendon so that we don't squeeze it and shorten the tendon. We also do a lateral retinacular decompression. We release the retinaculum on almost every case unless it's a general laxity case. We feel like that allows the patellar tendon to accommodate any shortening -- say 1, 2 mm. If you don't do that then it has to take up the slack somewhere, and I think it's by compression of the patellar tendon against the trochlea."

I'm a patient of Dr. S, although I did not have an ACL recon, I have had "lateral retinaculum decompression" with him to release the pressure of my patella against the trochlea that was brought on by arthrofibrosis. My understanding is that it is not the same as a traditional lateral release that is used to correct patella tilt; the retinaculum is selectively released (only very small amounts) to, in the case of ACL recon, counter shrinking of the patella tendon.

Unfortunately, we don't have the benefit of a Q&A session with Dr. S to have him clarify exactly what he does.

Jaci
« Last Edit: June 15, 2006, 07:12:54 PM by Jaci »
10/03 Twist injury
12/03 Menisectomy- tears ACL, MCL, & LCL missed by OS
Arthrofibrosis ROM 38-68
3/04- 4/08 Multiple scar tissue procedures:
6 scopes w/LOA, AIR, LR, chondroplasty, synovectomy, bone spur & plica removal
3 insufflations, many injections
Chronic AF, patella infera, IPCS

Offline missmyknee

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Re: Arthrofibrosis success
« Reply #10 on: June 15, 2006, 10:59:14 PM »
Jaci

I had a z plasty release of my lateral retinaculum when I had my DeLee osteotomy and LOA for baja and infrapatellar contracture. My surgery notes say it was for patella decompression. Is that the same technique you had or are descibing?  ;D
 
Pam
4Fx Clsd red
IMrod fib plate
derotate osteotmy tibfib
AF
IPCS patbaja
DeLeeOsteotmy,LOA,LR Zplasty,bongrf,chondrplty
chondrplty,LOA,fatpad remvd
TKR
openLOA,neurectmy,ITB Zplasty,fabela
PLC recon,revison,LOA,synovec
MCL,revison LOA
openLOA,prox Zplasty
openLOA, 6 neuromas excised,synov
3 Fusions

Offline Heather M.

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Re: Arthrofibrosis success
« Reply #11 on: June 17, 2006, 10:29:40 AM »
Bear,

Congrats on your success story.  Maybe someday you can run a triathlon with Lynn and the other arthrofibrosis success stories!

Regarding your comment that your MUA wasn't a horror story...IMHO that's because it wasn't a solo or "closed" MUA.  It wasn't done as a stand-alone procedure.  It was done after you had a scope to clear out the scar tissue--at least I assume you had this cleared out.  You didn't mention a lysis of adhesions, but nothing else you mentioned actually removes scar tissue so I'm going to guess that you had this along with your lateral release. 

Anyway, the only bone I have to pick about MUA's is when they are done as a STAND-ALONE procedure, meaning there is no actual surgery done.  The patient is just knocked out and their leg is bent forcibly and violently.  What you are describing is an MUA done as part of an actual surgical procedure, with a scope inserted to examine the knee, electro-cautery wand used to cut and remove adhesions, a lateral release done (most likely a selective one, not a full one, as the surgeon would want to avoid bleeding at all costs--huge risk factor for scar tissue, so you and Pam and others likely only had a "selective release" of tight lateral structures).  After all that was done, your surgeon likely removed the scope and other instruments and "manipulated" your leg while you were still asleep--hence the phrase MUA--in order to verify that all the adhesions had been removed and your passive range of motion had been restored.  This MUA done as the finale of a lysis of adhesions or generalized debridement procedure is NOT what most of us are talking about when we refer to a manipulation as a barbaric and outdated procedure. 

So not to belabor the point, but I just want to make sure we're all speaking the same language/using the same meaning for the same words.  The reason you've done SO WELL is that you had the scar tissue physically removed from your knee well inside of the six month timeframe that is usually required for optimal results.  You are a walking, breathing, JOGGING (you lucky dog!) example of the importance of timely and appropriate intervention for arthrofibrosis.

One thing I'm not clear on--did you develop all these problems after just tearing your ACL and other injuries?  Meaning you never had surgery after your injury last August?  I've read your post twice and can't really figure it out--you mention delays at starting PT and seeing OS's and I'm just assuming you never had ACL reconstruction surgery following your injury, but instead developed arthrofibrosis following a severe tear and subsequent immobilization and bracing?  If that's the case, you would be one of the first ones on this board to report injuries with no surgery followed by arthrofibrosis.  Ever the trend-setter, right?  Perhaps the torn ACL was blocking your flexion, as can happen--I hear this is very painful, as the torn bits attached to the stump continually get tweaked.  I can't imagine what that must feel like.  I've had synovial tissue get inflamed and get pinched between my tibia and femur, and it's enough to make me see stars when that happens.

Anyway, congratulations on the hard work and enjoy the payoff.  Not every ACL tear necessarily needs to be repaired, so just go with adding your preferred activities back slowly but surely. 

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 M.

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Re: Arthrofibrosis success
« Reply #12 on: June 17, 2006, 10:34:18 AM »
Re:  Arthrofibrosis being "highly preventable" it all depends on your definition.  But I'd say that's a pretty ill-advised statement.  Between them, Drs. Steadman and Noyes have roughly 50 years of specialized knee surgery experience.  And each of them told me to my face that sometimes arthrofibrosis just happens, no matter what the surgeon and patient do to prevent it. 

Dr. Noyes' course on arthrofibrosis--which was posted here in the hopes of addressing some of the extreme ignorance on this condition from patients and medical professionals alike--lays out approximately 25 "triggers" for arthrofibrosis.  25.  That's a whole lot of triggers.  And yet of all of these 25 potential triggers (which he breaks down into four different categories:  original injury, treatment, post-op complications, and rehab regimens), of all these 25 things that can set off the disastrous cascade that is arthrofibrosis, only 5-6 could be considered "preventable."  Five. Or. Six.  Dr. Noyes states that in the case of ACL reconstruction, with doctors using improved practices and knowledge that he and Dr. Steadman and other surgeons like them have been instrumental in disseminating, the incidence of arthrofibrosis is STILL just under 10%.  In Dr. Noyes' review of his own clinic and 600 patients, they got the number of ACL recons with arthrofibrosis down to 1%.  That's a pretty small number...unless you're that 1%.  Then it feels somewhat more like 100%.  And besides, that 1% number is for ACL recons...there are plenty of folks out there with arthrofibrosis who never had a ligament problem, myself included.

So it is quite clear that while many cases of arthrofibrosis could have potentially been remediated, caught earlier, treated better, or maybe even prevented...there is still a significant element of CHANCE, LUCK, and GENETICS at work here.  When you've done more than read a few articles on the net about arthrofibrosis, you realize that.  And when you've done everything "right" -- from the right surgeon to the right procedure to the right therapy and post-op medication/injection regime -- and you STILL have arthrofibrosis develop/return, then you truly start to gain an understanding of this 'cancer of the knee.'

Heather
« Last Edit: June 18, 2006, 10:04:35 AM 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 ChrisAngel

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Re: Arthrofibrosis success
« Reply #13 on: June 17, 2006, 09:13:22 PM »
If you could spend just one day walking/hobbling/crutching in the shoes of someone with severe recurring arthrofibrosis you might be a little more empathetic towards those of us that are "freaked out by arthrofibrosis".

I strongly agree. Arthrofibrosis is something many people cannot even begin to understand unless having it themselves. I'm absolutely horrified of the idea and general view arthrofibrosis has in my country (Finland), it's easier to put a camel through the eye of a needle, than finding an OS with good experience with arthrofibrosis.

Re:  Arthrofibrosis being "highly preventable" it all depends on your definition.  But I'd say that's a pretty ill-advised statement.  Between them, Drs. Steadm and Noyes have roughly 50 years of specialized knee surgery experience.  And each of them told me to my face that sometimes arthrofibrosis just happens, no matter what the surgeon and patient do to prevent it. 

Excellent point. Even the most qualified surgeons cannot magically erase arthrofibrosis out of our lives. There is so much of that which dependes of the patient's individual case. What works on someone, might not work for someone. Some ones gets rid of scar tissue after one surgery, while the others have to live with it the rest of their lives.

As many others, I've gone through more doctors than I have the shame to admit. OS's were ready to toss the towel in the corner in my case, since it was "no use to operate meanymore". One even had the guts to say to my face, that no such thing as special experience over arthrofibrosis even does exist!! That was when I was asking if they knew someone with special experience over arthrofibrosis and this was the response I got. ARGH!! Talking about professional behaviour towards a patient...! Like I was asking the moon from the sky...unbelievable.

Long time after that I finally decided to try my absolute last straw...taking contact the only OS recommended in here from my country. Took a long time to get to see him and to get back to him after getting instructions to get MRI's. But so far every effort to get to see him has been worth it.

He was everything I've heard people talking about great OS's in here. He did not only talk about everything I've so far heard only in the forum, but said to me "Of course we cannot leave you like this". Just about the most wonderful line I've heard in so many years!

I am going to have my knees operated by thsi guy. He is somewhat 60 years old and has GREAT experience in treating arthrofibrosis. Been published nationally and internationally. The only thing (besides the price of the private hospital operations) preventing me from going to "get my knees fixed" right away is, that I also have hurting shoulders, which are not a nice combo when walking with crutches...difficult condition to treat while knees demand crutches.

But...when the time comes to have surgery, I have high hopes. After I've had the operations, I know what this OS can do. Dunno yet, but I have high hopes.

So it is quite clear that while many cases of arthrofibrosis could have potentially been remediated, caught earlier, treated better, or maybe even prevented...there is still a significant element of CHANCE, LUCK, and GENETICS at work here.  When you go beyond reading a few articles on the net about arthrofibrosis, you start to realize that.  And when you've done everything "right" -- from the right surgeon to the right procedure to the right therapy and post-op medication/injection regime -- and you STILL have arthrofibrosis develop/return, then you truly start to gain an understanding of this 'cancer of the knee.'

So true. Cancer of the knee. Couldn't have said it any better myself!

I know new surgeries will not promise happily ever after, but still the new OS has *hope* that maybe we can accomplish at least *something*. And that *something* is enough for me. At least for now. I'll know it afterwards then.

This is for everyone out there still searching for the right OS. Keep looking, keep searching, keep educating yourselves, keep fighting! I wish we all will find the right people. Maybe they cannot cure us, but at least give us hope. And in this, hope is everything. Hope of a better tomorrow.~ :)
 
Chris
*
   
31 young :)
RemovePlica
-L 12/98+R 9/99
RemoveScartissue
-L&R 4/04
RemovePlica&scartissue
-L 8/06 ->R postponed for now (need to find a new surgeon..*sigh*)
*Fibromyalgia+CPS+Acid Reflux+Tietze's syndrome+CFS+depression*

Offline The KNEEguru

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Re: Arthrofibrosis success
« Reply #14 on: June 18, 2006, 11:48:42 PM »
Hi
I have been reading the arthrofibrosis threads and some of them get quite heated. It is a difficult set of issues - we have a problem which in the best hands can trigger in 10% of knee surgical cases, with 1% proving resistant to quality treatment.

This forum is doing a good job in alerting postop (and many post-injury) patients who are failing to gain range-of-motion within normal timeframes to the possibility of arthrofibrosis being a cause. Of course this may cause some people to panic who do not have this abnormality of healing, and of course not everyone can rush off to a world-class unit for rehab.

What I am trying to do to help the process of education here is to work with an expert surgeon to lay down a clear framework that we can all refer to.

Please all keep a close watch on the arthrofibrosis course, and feed back critique to me, so that we can all gain from it. I feel it is really important that those of you who have been definitively diagnosed with arthrofibrosis continue to offer advice - we can all learn from your experience, and this helps me, too, to tailor the content with Dr Noyes.
--
KNEEguru