The LIBRARY => NOTES - Your success stories => Topic started by: bear on May 13, 2006, 06:00:07 AM

Title: Arthrofibrosis success
Post by: bear 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.
Title: Re: Arthrofibrosis success
Post by: bear 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!!
Title: Re: Arthrofibrosis success
Post by: celinenj03 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.
Title: Re: Arthrofibrosis success
Post by: hottubpam on June 14, 2006, 02:55:19 AM

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".

Title: Re: Arthrofibrosis success
Post by: celinenj03 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.
Title: Re: Arthrofibrosis success
Post by: Graceful1 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.

Title: Re: Arthrofibrosis success
Post by: celinenj03 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.
Title: Re: Arthrofibrosis success
Post by: favouritesearcher on June 15, 2006, 10:42:01 AM

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.

Thanks again.

Title: Re: Arthrofibrosis success
Post by: celinenj03 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.
Title: Re: Arthrofibrosis success
Post by: Jaci on June 15, 2006, 04:08:14 PM

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.

Title: Re: Arthrofibrosis success
Post by: missmyknee on June 15, 2006, 10:59:14 PM

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
Title: Re: Arthrofibrosis success
Post by: Heather M. on June 17, 2006, 10:29:40 AM

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. 

Title: Re: Arthrofibrosis success
Post by: Heather M. 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.'

Title: Re: Arthrofibrosis success
Post by: ChrisAngel 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.~ :)
Title: Re: Arthrofibrosis success
Post by: The KNEEguru on June 18, 2006, 11:48:42 PM
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.
Title: Re: Arthrofibrosis success
Post by: KatieO on July 04, 2006, 03:20:28 PM
Well, I have surgery tomorrow for IPSC with Dr. Fulkerson himself. I have had 3 previous surgeries, the last of which was 3 years ago. How long my problem has  been arthrofibrosis is anyone's guess. I did have good mobilization after each surgery. I have not only been reading Dr. Noyse but have copied out parts IV and V for my PT, wanting to watch for the 2 to 3 week critical passage. I have found it interesting that some people may be genetically inclined to excessive scar tissue and that it was mentioned that it might be an auto-immune response. I also have Reynauds Syndrome (auto immune) and had RSD (also autoimmune). I am scared and excited and scared and excited.
Title: Re: Arthrofibrosis success
Post by: bear on July 26, 2006, 04:29:37 AM
I know I posted a long time ago and just recently realized there was a fair amount of discussion afterward. 

An update today, July 25 - I jogged 3 miles this morning.  I usually jog three times a week.  I bike to work ~4 days a week, 10 miles round trip.  On a recent vacation I did a couple decent hikes (5+ miles), one with 2000ft elevation gain in 2.5 miles, and swam over a mile across a lake and back.  My knee seems to be handling all of this quite well (knock on wood) and I am headed for a backpacking trip in 10 days.  I recently took a job as an outdoor program coordinator, coordinating and leading hikes for a non-profit conservation organization.  Last fall I wasn't even sure I'd walk normally again, or be able to go up and down stairs, so this has been a very welcome turn around!!  As I told someone recently, I feel like I have my life back.  I look at those 5 months between 8/1 and 12/15 as being a very dark, scary time, but also as a pretty big personal challenge that has changed my outlook on just being able to walk.  I still marvel sometimes that my knee actually bends!! 

To clarify, I never had ACL surgery.  I developed arthrofibrosis just from the injury.  I still have not had my ACL repaired and am running around without one.  But I also, to date, have not had any instability.  I am quite sure that in my case a lot of the scarring came from those first few weeks of immobilization and not being given any timely instructions about how to treat an ACL tear. 

To the best of my knowledge, and I was pretty persistent with my surgeon and made sure she explained exactly what she was going to do in the operating room, she performed the MUA *before* the scope.  So,  I suppose, it was a little barbaric.  She could not get it to completely bend using force, so then she went in arthroscopically and did a lateral release.  She never said she did a lysis of adhesions, nor did she write it on the surgical report.  All I know is the process worked, however it was done...  she then filled my knee up with a steroid concoction to keep the swelling down.  And I dove into PT.

I think the arthrofibrosis course is a great addition to the site (I've read a couple of the chapters) and I am still thankful for this site.  I know it can get heated and testy, and I can understand why.  My main recommendation to anyone in this situation is to read a lot (educate yourself!), ask questions, and keep your hopes up!! 
Title: Re: Arthrofibrosis success
Post by: KatieO on July 26, 2006, 02:30:30 PM
It was interesting for me to go back today and read this from the start. I am now 3 weeks post op. I am still scared and excited and hopeful, though from this side of the surgery. I would say that I am in the category of those with a genetic predisposition, so I am very nervous. The healing is going very well. I have a good range, lots of stiffness but it loosens up when I work my knee or when I walk for 10 or 15 minutes. I have very mild swelling and had no bruising at all. I know to keep watching and measuring with my PT to make sure the range continues to improve. I am nervous about how much inflamation I can cause by overworking my knee vs how much I need to keep pushing.
I know that all signs are good but I have been down (in pain,with severe limitations) for so long, I don't know what up looks like. I start a new job in a couple of weeks and look forward to a fresh start. I am weaning off the percoset now and going to take hydrocodone for a month, and then try for no pain meds. I have been on pain meds for years beyond count.
I can keep at the adhesions. How can I keep the scar tissue from taking up too much space under the patella and having that itself cause limitations? A scary but exciting time for me.
Title: Re: Arthrofibrosis success
Post by: celinenj03 on July 27, 2006, 07:48:52 PM
Katie, I had the same and you'll find the loosening up lasts longer and longer and the stiffness starts to fade. YOU'RE DOING GREAT!!!! And Bear, that is awesome that you are running again and all without your ACL. Amazing! I'm really impressed. I rode my stationary bike a lot after injury, after partial meniscectomy and after ACLR and so far no scar tissue. Keep the knee moving, it really does wonders. God bless you both!
Title: Re: Arthrofibrosis success
Post by: KatieO on July 29, 2006, 02:41:29 AM
I know this is a bad question, but how soon is soon??? I know that is impossible since every surgery is different but I am getting impatient with this healing stuff and want to move on to having  a happy and mobile knee!!! Someone put me to sleep until this is over. Oh, that is happening. I nod off a couple of times a day for these long naps. Sigh...
Title: Re: Arthrofibrosis success
Post by: bear on August 29, 2006, 06:03:16 AM
Another update...  It's August 28, and I just returned from another backpacking trip, this one 3 days and 23 miles, with about 4200 ft of elevation gain.  My husband and I went off trail for much of the trip and traversed some very steep, rocky, uneven terrain and my knee never gave me a problem.  I use hiking poles religiously, which help a lot.  This trip was a goal of mine for over a year, since I was first on crutches and learned about the area. 

So, happy to report that all is well.  I've scheduled a meeting with my surgeon in about a month, to discuss an ACL repair.  I'm 50-50 on whether I will have it done.  Since I can do so much as it is, except play soccer and other similar sports, I'm not sure it's completely necessary and worth the risk.  Part of me thinks I should just accept what I've gained and live with it! 

Anyway, just an update.  Again, I am still incredibly thankful I can even bend my knee. 
Title: Re: Arthrofibrosis success
Post by: KatieO on August 30, 2006, 12:18:31 AM
That's going to be a very tough call. You have such fabulous mobility now, I could sure imagine "why mess with a good thing?" That is just awesome about your backpacking trip! Life is good, eh???
Title: Re: Arthrofibrosis success
Post by: favouritesearcher on August 30, 2006, 04:33:49 AM
Hi Bear,

Thanks for posting an update; I'm envious of your fuctional knee, though I have managed to go on a 1.5 day hike myself (7hrs + 4hrs), and also ascended the Gros Piton which is 2 hours straight up and another 2 straight down (the painful 2).  I'd also probably say "no" to an ACL reconstruction because of the risk, expecially if the surgeon messes around with the patellar tendon ... plus you'd have a year or so of rehab which is no fun.  Over time, a lot of ACL-Rs stretch anyway.  It's still interesting that you needed a lateral release to get your full rom back.

Title: Re: Arthrofibrosis success
Post by: celinenj03 on September 02, 2006, 06:33:22 PM
Great for you Bear!!! Having had an ACLR and knowing the risks of possible loss of range of motion, scar tissue, etc. why roll the dice yet again? If you are functioning good and happy and satisfied with your life, cash in and go home! ;)
Title: Re: Arthrofibrosis success
Post by: bear on September 30, 2006, 05:28:14 AM
Well, I met with my surgeon again yesterday to discuss ACL reconstruction.  Her gut was "no."  I have had no instability, and am even coaching a soccer team these days, though I don't play much.  Why do surgery just to gain more confidence?  In the meantime, I will step up my sports, try some lateral movements and see how it goes.  I think some members of my family think it wouldn't be a big deal, but I know the recovery would be long and there are risks, given the previous bout of scar tissue.  So...  at this point I am going to postpone and go from there.  Anyway, that's where I'm at.
Title: Re: Arthrofibrosis success
Post by: KatieO on September 30, 2006, 02:20:06 PM
I think that is a smart plan. While ACL R is do-able, it is a big deal and not to be taken lightly. It's always an option IF you need it. Avoiding surgery is a great thing to do!
Title: Re: Traumatic Injury and Arthrofibrosis
Post by: Carmen on June 15, 2008, 07:27:18 AM
I noticed in reading all these comments on arthrofibrosis that one very important contributing factor has been overlooked.  The severity of the trauma plays a substantial role in increasing ones propensity for developing the condition.  Certainly surgeons and rehab can be a factor but sometimes its just the reality of the injury and overcompensation of the knee.  Other genetic factors contribute as well.  For example, in the civil war men who got arthrofibrosis had a genetic advantage in that they got to keep their knee unlike the poor sap whose knee was too unstable to ever walk again.  Prior to the modern age it may have been a blessing rather than a curse.  Furthermore there are often corresponding complications such as reflex sympathetic dystrophy (also known as complex regional pain syndrome or causalgia (sp?)).  Anyway,  I'd like to here more about treatment and success stories with arthrofibrosis occuring after high velocity impact injuries or knee dislocations.  I really think its quite an oversimplification to say arthrofibrosis is very preventable given all the variables that might or might not go into a particular persons situation.  It would also be helpful to me to know what peoples qualifications are when they assert certain things.  Many are excellent at explaining that they are patients but others I'm not so clear.  As for me I dislocated me knee sledding with my kids (technically its not a knee dislocation since by some great miracle I didn't have arterial damage for which I'm thankful since I was in a remote location in Alaska when it happened) but according to the surgeons I had every other injury consistent with a full dislocation.  Basically everything blown to bits in places other than their place of origin and 100's of hairline fractures in the patella and several in the tibula.   
I have a "moderate" case of arthrofibrosis according to the doctor (can't imagine what a bad case is).  I have 70 degrees of flexion and within 20 degrees of full extension after months of PT and the gym and the pool and a recent steroid injection.  In August (I'm out of town and jammed at work) I'm having surgery to remove the scar tissue and possibly quadriplasy and tendon lengthening (forgive me I don't know the jargon or the acronyms).  I have a doctor with a stellar reputation and got a second opinion from another doctor with a stellar reputation.  The only area they differed is one would do the ACL repair and scar removal at the same time and the other not.  I stayed with my original doctor who prefers the two step process (research favors his approach).  I already had one surgery in the beginning to get rid of all the debris and put things back where they belonged (my knee cap also dislocated so there was debris caught underneath from when it snapped back).  Anyway, long story short I'd like more info if anyone can provide it on recovery from severe knee trauma.  My injury has been likened by three orthopedic surgeons to hitting a guard rail unprotected at 80 miles an hour.  To give you a visual the outside edge of my foot (side with pinky toe) was about three inches from the top of my hip at one point.  Before that it hyper extended and rotated and then snapped back.  Not wanting to ruin my kids fun I sat out there for another 1.5 hours before I realized something was really wrong.  I didn't have arthrofibosis before surgery though but I did have a knee that was unable to bend or straighten and it was larger than a soft ball but not quite as big as a volley ball.  I'm told if the scar tissue removal goes well I can have ACL repair 6 weeks later.  I'm not sure I can do formal PT everyday though cause I have 3 kids under 6 and my husband and I have very high demand jobs.  I could work out everyday because that's more flexible with hours and there is a daycare there (I have a hard time taking the kids out of daycare just to put them back into another one).  Thoughts/ experiences on high trauma would be great.  Thanks. Carmen
Title: Re: Arthrofibrosis success
Post by: missmyknee on June 15, 2008, 06:18:08 PM
Hi Carmen

Welcome to the forum, but sorry you have come because of your injury and arthrofibrosis. Your disocation was very traumatic , did you suffer any other damage to the other ligaments like the PCL, posterolateral corner, LCL or the MCL ? 

I've been a forum member since 2003 and have had arthrofibrosis since 2000, that started when I broke my leg in 4 places. I was thrown from a horse who fell after jumping.  I had 2 fracture to the fibula one which was to the ankle and 2 fractures to the tibia. 3 of the fractures were displaced. I had 2 surgeries to the leg and ended up having another one to surgically rebreak my tib-fib because it was set crooked. We have a section above this one on soft tissue and arthrofibrosis  . You will find several pages of posts over the years from many who have asked about arthrofibrosis. There is also another part of this website called the Community Hub, with a section all about arthrofibrosis. We are very fortunate to have the moderator of this website, who is a physician, taking an active role in supplying a large amount of information on arthrofibrosis by acquiring many medical articles on arthrofibrosis, or AF as we call it and by getting other professionals involved in supplying medical information. We are very fortunate to have one of the foremost experts on arthrofibrosis write a tutorial on it , so far in 6 parts with more to come. This is a very easy to read, but detailed explanation of everything you would like to know about arthrofibrosis. He also just wrote a 9 part tutorial on ACL reconstruction Failures and Revisions. There is a link to a compilation of current and previous threads from forum posters with some of the more indepth discussions on AF. When I first joined this forum in 2003 , there was very little information out there. In the beginning the information we had was from past forum users doing their own research finding medical articles and posting links to them and our own experiences. The more articles found, we noticed alot of the same names of physicians who were researching and developing treatments and rehab for AF. After exhausting treatment from our local docs and still having problems , several of us have found we needed to travel to one of the "names" on those articles to be treated by an OS who had extensive knowledge in treating AF. Some. of us have gone to Vail  Co to see Dr Steadman and Millett., Paulo Alto CA to see Dr Eakin, Cincinnati Ohio Dr Frank Noyes, Houston Texas Dr Lonnie Paulos, Ann Arbor Mich Dr Wojtys, South Carolina Dr Folk to mention a few  I myself, have spent 8 yrs of constant researching thru medical journal articles, my own experiences with AF, my relationship with my OS ( Dr Noyes) who is one of the experts, the extensive rehab for this and the education from my OS's PTs have given me an extensive knowledge base to help others. Over all these yrs there is now an excellent source of information on AF on this website. I also started my own blog on my experiences of the last 8 yrs and 13 surgeries with AF.  I will post all the links for you. Sometimes you need to click on the end of the link to get it to work.

This is for the AF section of the forum.

This one is to the tutorial by Dr Frank Noyes. It is in 6 parts. Be sure to read all 6

To all the professional articles:

Great threads of AF:

My blog on AF. Begin with the story on AF from IM nailing

Community Hub

Once again, welcome   ;D    If you have any questions one of us would be glad to help .


Title: Re: Arthrofibrosis success
Post by: Carmen on June 18, 2008, 07:28:15 AM
Thanks Pam;

I have checked out some of the links you attached but it's great to have them all in one space.  I wrote my message and then thought I could post it in any forum I chose but it got stuck here otherwise I would have put it somewhere else.  As for your question regarding did I damage anything else.  I meant what I said when I said i blew the whole knee. Literally everything. ACL blown to bits - pieces all over the place, torn PCL, MCL, totally shredded the medial retnaculum (sp ? - bands on the inside edge of the of the knee), folded the meniscus and connective tissue in half (lost 1/3 of each front meniscus).  Messed up tissue on the bones and up and down the bones - lots of bone bruising in addition to the hundreds and hundreds of hairline fractures.  Tons of just shredded soft tissue.  Of tens of thousands of knee surgeries this surgeon and the other I consulted said they had only seen or heard of a handful of knees this messed up and still have a leg.  Its as a mess but neither of them was fatalistic they just encouraged me to be patient.  Amazingly it healed it just didn't stop healing.  Now there are adhesions all over but probably not in the joint just around it which I'm told is much better except that it may have adhered my quadricep muscle to the bone - we'll see when he gets in there.  Well I'm tired and I did want to check out those other sites.  Thanks again. Carmen 
Title: Re: Arthrofibrosis success
Post by: Carmen on June 18, 2008, 07:46:40 AM
Hi - I'm Carmen I put a post on here last week in this thread under Carmen.  Shouldn't be too hard to find I've only posted that and now two more.  I'm wondering if you could check it out and share it/ post it in any forum you think might yield better results. I'd really appreciate it - thanks - Carmen