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Author Topic: Compilation of Advice From AF Success Stories and Experienced Knee Geeks  (Read 21320 times)

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Offline EdD

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While I was reviewing the posts for the “Compilation Arthrofibrosis Success Stories,” I noticed some advice from people who had successful outcomes after their LOA’s or experienced Knee Geeks and thought it might be helpful to put it in one post for future reference:

JACI:

I will give you the same recommendation that I give most people who come to this board looking for info: You need to learn everything you can about arthrofibrosis so you can be an effective advocate for proper care. By learning about AF you will be better equipped to interview your OS to determine his level of knowledge and whether he really understands what AF treatment should involve. This is not a situation where you can simply ask "Do you have experience treating arthrofibrosis?" You need to ask very specific questions about surgery, pain management, control of the inflammatory process, physical therapy, post-op goals, and means of intervention should scar tissue form again. And, you have to know enough about arthrofibrosis to determine whether or not the OS is giving you the "right" answers to your questions.

You might want to read up on excess scar tissue-- a condition called arthrofibrosis-- it might shed some light on what you're experiencing and what needs to be done about it. Here are some links to information on KNEEguru including guided learning, article reviews and clinical casebook.

Dr. Millett’s article/ clinical casebook

http://www.casebook.kneeguru.co.uk/index.php/knee/issues/arthrofibrosis_of_the_knee/

Dr. Noyes’ arthrofibrosis tutorial and Dirk Kokmeyer’s rehab tutorial

http://www.kneeguru.co.uk/KNEEtutor/doku.php

KneeGuru’s literature review (look under problems with healing)

http://www.kneeguru.co.uk/insights/doku.php


Here's a link that I didn't post before-- It will take you to a page on the Community Hub called "Arthrofibrosis-- Great threads on the bulletin board." It includes a long list of links to other people's arthrofibrosis stories. Thanks to missmyknee (Pam) who submitted the list.

http://www.kneeguru.co.uk/KNEEnotes/book




Arthrofibrosis fits into 2 broad categories-- primary and secondary. In the tutorial Dr. Noyes explains that AF is considered secondary when there is an identifiable cause-- prolonged immobilization, joint bleeding, infection, poor surgical technique, inappropriate PT and so on (you can reread the tutorial for the full list). Primary AF is believed to be a genetically-based exaggerated healing response; Dr. Noyes mentions that around 1% of patients have AF that falls into this category and such people will require major surgery to correct residual problems from AF.

A person can have primary AF, secondary AF, or both. Unfortunately there is no way to know which category you fall into because there are no tests for primary AF. So the AF you have could be from some secondary cause, it could be from genetics, or it could be from a combination of the two.

Also keep in mind that arthrofibrosis can either be primary or secondary. Secondary arthrofibrosis can be attributed to an identifiable trigger such as infection, prolonged immobilization, improper PT, excess bleeding, very traumatic injury or surgery, multiple repairs performed in a single surgery, to mention a few. Secondary AF is generally treated with LOA and specialized rehab and most people recover just fine as long as there is no other secondary trigger. Primary arthrofibrosis is believed to be the result of an out of whack immune system. In most cases, the immune response is truly excessive-- severe inflammation, swelling, and so on that continues beyond well beyond the expected post-op healing period.

As to which group one falls into, unfortunately there is no way to know for certain. There is genetic research going on to identify a genetic marker for predisposition to forming excessive scar tissue.  If one has an LOA and proper rehab and no return of scar tissue, then that person most likely had secondary arthrofibrosis. Primary arthrofibrosis may involve multiple surgeries, proper rehab, and very proactive measures to help break the exaggerated inflammatory immune response that results in excessive scar tissue formation.

People sometimes ask "if surgery is leading to scar tissue, why not just stop having surgery?" As someone who has been through the excruciatingly painful experience of severe arthrofibrosis, I can tell you it's not that simple. The masses of scar tissue cause permanent damage to articular cartilage, ligaments, joint capsule, nerves, and other structures; the longer the adhesions remain the more damage they can do. Plus, the scar tissue itself can release enzymes and other chemicals that generate more inflammation and continues the cycle. Not having surgery is really not an option, so I hestitate to characterize it as being stuck in a "surgical cycle" unless a person is being treated by an inexperienced or ill-informed OS. In such cases poor surgical technique, improper rehab, inadequate pain management, and failure to control post-op inflammation through aggressive use of medications can all lead to perpetuation of the cycle that results in more scar tissue--- improper treatment is contributing to the exaggerated immune system response-- so it may be accurate to say one is stuck in a "surgical cycle." (This is why those of us with primary arthrofibrosis are so passionate about recommending that people an OS with significant experience with arthrofibrosis.) I realize it may sound like I'm splitting hairs, but it's not really a surgical cycle that one is stuck in with AF, it's an inflammatory immune response cycle.

From my experience and research I've concluded that there are two things (in a broad sense) that lead to AF turning into an ongoing saga: Improper treatment and genetics.

You have no control of the genetic aspect, there is nothing you can do to change it or to even know if that's what you have, it often comes down to multiple surgeries with the best AF experts. In other words, you cannot change your genetics, but you can manage certain aspects of your care to increase your chances of a better outcome.

Then there's improper treatment-- This is what you can control or impact. The ideal way would be to go to one of the known AF experts.

[Hottubpam complied the following is a list of names of OS across the country that have had demonstrated success in dealing with arthrofibrosis.  There is no recognized sub-specialty in the OS world but for those of us dealing with this miserable condition it helps to know where you can find qualified help in dealing with scar tissue/arthrofibrosis.


Dr. Colin Eakin, Palo Alto Medical Foundation, California
Dr. Steadman, Steadman-Hawkins Clinic, Vail, Colorado 
Dr. Peter Millet, Steadman Hawkins, Vail (as of 10/1/05)
Dr. Lonnie Paulos, Texas
Dr. Frank Noyes, Cincinnati Sports Clinic, Ohio
Dr. Wojitys, Ann Arbor, Michigan
Dr. Folk in South Carolina
Dr. Mike Terry, University of Chicago
Dr. Shelbourne, Indianapolis, IN
Dr. Flandry, Hughston Clinic, Columbus, Georgia]



However, I understand that not everyone can go to one of the known AF experts, hence my (and other's) constant recommendation to learn everything you can about AF, then interview your OS and weigh everything the OS says against what the experts say. If what your OS is proposing contradicts the experts-- thus falling into the improper treatment category-- you have some choices to make. You may have to take on the role of educating your doctor about AF and being an active partner in your treatment-- that includes NOT agreeing to certain types of treatments. Some doctors are amenable to such partnerships and some are not. Another choice is to seek a second, third, forth, etc. opinion until you find an OS who is knowledgeable about AF, again you will have to become an 'expert' on AF so that you can gauge whether the OS you interview is fully informed and experienced to not only perform the surgery, but also to manage the inflammatory cycle-- including knowing when and how to intervene--, provide adequate pain relief, and ensure that you have appropriate PT. 

I think most of us live in cultures where we are taught to revere doctors and to accept their advice/ opinions without question. This sort of abdication works fine for common, everyday, run-of-the-mill conditions or illness, but can be disastrous for conditions that are not all that common-- like arthrofibrosis. Thus, once again, the AF board mantra: Learn everything you can so you can be an effective advocate for your care.

From time to time a person has posted that their OS is saying that genetically based AF is very rare, so it's probably not what they have. I'm always dumbfounded by such a statement. The relative rarity of a condition is not a basis for ruling it out. My feeling is that all AF must be treated as if it is genetically based until you know otherwise. That means that every possible secondary contributor must be eliminated/ prevented. How you know otherwise is that every possible secondary contributor was avoided and you had a successful recovery from surgery without an exagerated inflammatory response and scar tissue regrowth. Many, many people recover from AF with only one surgery and proper rehab, most likely those people had secondary AF. Then there are those of us-- like me for instance-- who have been treated by one of the best of the best and continue to have exaggerated healing response and over-growth of scar tissue; we most liklely have primary AF. For primary AF the goal becomes getting to a point where your knee is more livable and functional and less bad than before; generally the only way to do that is with surgery and after-care with one of the experts. 

.  In the various articles and the tutorials there is discussion of using post-op range of motion goals. Most have a goal of reaching full extension within the first week or 2 post op. Over-pressure to gain extension is generally the first line of intervention and it can be successful if instituted early-- i.e. at the point where the goal was not met. Remember-- early wispy scar tissue (it kind of looks like cobwebs) can be broken up. But if it's not dealt with early--measured by both time and amount of motion loss-- it can become established in as little as a month. (Part 5 and 6 of tutorial) So, if there ever was a chance that you would have been helped by over-pressure or extension casting, you are way beyond that. Similar info in Table 5 of Dr. Noyes article "Prevention of permanent AF..." from 2000. Every knee that was treated with an extension cast had less than 10 degrees extension loss. In other words the extension loss was dealt with BEFORE it progressed to be more than 10 degrees. Dr. Noyes 1992 article "The early treatment of motion complications..." includes very detailed description post-op goals and intervention, see Table 1 and Table 2 for a brief overview.

If the early goals extension and flexion are not met, then intervention should be instituted at that time. Once you've gone beyond that point-- both in terms of time and amount of motion loss-- you have missed the opportunity to intervene using conservative measures such as over-pressure (also called low load prolonged stretching) and use of LLPS devices-- JAS, ERMI, Dynasplint, extension boards, and use of extension casts if over pressure failed to restore full extension. The same applies to use of MUA (without a scope).

If you look in Dr. Noyes 1992 article "The early treatment of motion complications..." his protocol is to begin hanging weights (over pressure) in the first post-op week if extension lacks 10-15 degrees and he performs gentle MUA the 2nd post-op week if the patient lacks 70 degrees flexion. (I realize the article is about rehab post ACL recon, however the same intervention protocol would apply to a less invasive procedure like what you had. It's also the same rehab protocol that they use for AF. This was explained to me by Sue Barber Westin, one of Dr. Noyes researchers, in emails we exchanged  back in 2004.) So, based on Dr. N protocol, you have missed the opportunity to use MUA as a treatment-- too large of motion loss and too late in terms of time.

35 degrees extension and 110 flexion is a very significant loss of motion. It is beyond early intervention such as over-pressure or extension casting both in terms of time post-op and the amount of motion loss that you have. So the option at this point would be arthroscopic release of scar tissue followed by appropriate rehab. Arthroscopic release is sometimes called debridement and also called lysis of adhesions (LOA) and the article/ technical note from Arthroscopy August 2004 "Arthroscopic treament of the arthrofibrotic knee" explains a detailed 9-step approach that is used by many of the AF experts. The approach does not include use of MUA. The term 'open' is generally used for surgery that involves actual incisions rather than being done arthroscopically (i.e. with a scope).

The LOA should be followed by appropriate PT such as that outlined in Dr. Noyes articles and the article "Rehabilitation of the arthrofibrotic knee". You could use over-pressure with weights or an extension device such as JAS, ERMI, or an extension board. 

There's a great talk on Orthosupersite.com of Dr. Steadman discussing rehab principles. He talks about what happens when one experiences motion loss due to joint scarring. It discussed rehab in the context of ACL recon, but the general principles apply to recovery from any type of surgery. Here's the take away you should listen for:

Phases of rehab should occur in this order and you should not move to the next phase until the prior has been achieved:

Motion
Mobility
Aerobics (this is referring to excerising the rest of the body)
Strength
Power
Eccentric loads
Full recovery

Here's a link to the site:

http://www.orthosupersite.com/

You have to register to use the video library, but it's free. Once you register look for the "video library" heading toward the bottom of the left-hand side of the page. Click it to get to the library index. Newer videos are added to the front, Dr. S talk is from 2004 and the last time I looked it was listed on page 7 of the index. (This will change when new titles are added). So for now go to page 7 and look for the title "Rehabilitation and Results" if it's not there check page 8 of the index. Click on it to view the video. I think the talk is about 25 minutes, it's interesting and worthwhile listening.

Before I knew about 'arthrofibrosis specialists' I decided to have scar tissue surgery with an OS who seemed very knowledgable. He definitely knew more about what was going on with my knee than my first OS who insisted that I couldn't bend my knee because I was tense. Mind you I had less than 60 degrees total ROM but the first bozo just didn't have a clue. OS #2 sounded really knowledgable, at least he knew what AF was and seemed to have a good plan to treat it-- surgery followed by immediate PT. I insisted on having a pain pump post-op for 3 days because I had read about it on the bulletin board and had a CPM for the same reason. I also bought a cryocuff so icing was handled. At that point I didn't really know much about the need to control the post surgical inflammatory process (KNEEguru didn't have all the articles, tutorials and so forth) so I didn't ask the question "What do you plan to do to control the inflammatory process?"

In addition I did not get absolute clarity on his surgical plan-- when he said an MUA with a scope I assumed that he would scope my knee first then try to bend it. Boy was I wrong, he did a forceful MUA then scoped it-- I ended up with severe bruising which of course meant that there was internal joint bleeding. Remember from Dr. Noyes tutorial that excess scar tissue is caused by an exaggerated response to trauma. And my surgery definitely qualified as trauma. Plus, blood is a known trigger for AF. I could feel scar tissue forming within days of my surgery. By about 3 weeks post-op my knee was severely inflamed. I begged for a  cortisone injection (having by that time read up on KNEEgeeks bulletin board and a few medical journal articles). He refused to do an injection stating that scar tissue cannot form that soon and that my knee was still healing. He finally gave in 2 weeks later and could barely get the needle through the masses of scar tissue that had formed.

From that experience I learned a some really important things-- The surgery must be performed with as little trauma as possible (you really do have to attempt to trick the body into not knowing it went through surgery/ trauma). The OS must be familiar with techniques for controlling the inflammatory response and have a plan for using them. The OS must be knowledagble enough about AF to recognize the early warning signs (see Dr. Noyes tutorial) and intervene appropriately. You must have a PT who is familiar with AF and who works closely with your OS. As Dr. Noyes mentions your therapist will have much more frequent contact with you than your OS, therefore your PT must be alert to changes and warning signs that the healing response has gone off-track.

And the most important lesson: Confidence does not equal competence. OS #1 was quite confident that my problems was that I was tense. OS #2 sounded really knowledgable and confident but his knowledge fell short. (I still think he is a really good OS, just not for arthrofibrosis.)

When it comes to arthrofibrosis the only credentials that matter are having the knowledge and skill to treat arthrofibrosis.



1/23/2006 tore the ACL, MCL, meniscus, femoral nerve while  skiing
1/30/2006 ACL reconstruction hamstring graft, meniscus repair at Vail
4/2007 femoral nerve damage diagnosed
8/1/2007 LOA/MUA at Vail "severe arthrofibrosis"

Offline EdD

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KICK KNACK

FLOWCHART:

1) What Caused Your Arthrofibrosis?  (A) bad surgeon (e.g. badly done surgery), (B) genetic predisposition, (C) bad post-op protocol)

2) In any of above cases, if you have arthrofibrosis: most important thing you can do: FIND A SURGEON w/ a ton of experience on arthrofibrosis and w/ experience in the type of Arthrofibrosis you are suffering from (post menisectomy, post TTT, post TKR, post ACI, etc etc). 

3) A good surgeon will a) teach you what you can do in the immediate and subsequent post op setting to avoid reforming scar tissue (e.g. elevation, ice, petrissage,  massage,etc etc).  A good surgeon will work closely with athletic trainers and/or physical therapists to guide and teach you.

4) I feel pretty damn lucky to have escaped the quicksand, hell pit that is arthrofibrosis.  Having gone through this hell and come back alive, my most important piece of advice: DON'T WASTE YOUR TIME w/ AMATEUR SURGEONS on arthrofibrosis.  Ask them how many cases they have dealt w/ in their careers.  You want upwards of 50 I would think. They should have an appreciation for and understanding of the physical therapist's role.  Anyone who thinks that the surgeon's knife is all that is needed here is probably not the right person for you.

Amen,

Here's to pulling out as many of you from the quicksand hell as possible.

HEATHER M

So these aren't platitudes, this has been my experience:  two to three weeks post-op is MISERABLE.  You want to kick yourself for undergoing surgery again, and the knee is starting to respond to increased demands of new function by swelling, swelling, swelling.  And swelling.  This will resolve.  It may take some medical intervention with cortisone, but for most of us it just slowly went away when we went back to the four basic post-op exercises.  Spend all day in the CPM with ice, if necessary, as this provides the necessary elevation and can help your body produce new synovial fluid--which will help make your knee feel better.  I was in the CPM 18 or more hours a day, and it really helped.  Barring that, ice and elevation high above your heart will help, just make sure to do some ankle pumps and mobility work every hour or so (nothing major--spin for one minute SLOWLY on the bike or do 5-6 wall slides, that's all).  The ankle pumps and quad sets actually help to push swelling out of areas of the knee, so don't under-estimate the importance of these.  Same thing is true for patellar mobes--these help keep fluid from pooling behind the patella and patellar tendon, along with the supra-patellar pouch.  Be sure you're doing these right--move more than just the kneecap, you have to also move the patellar and quad tendons.

So at the risk of repeating, here's a list of the basics:


Wall slides - be sure to support the bad leg with the good one, especially when sliding back up the wall, otherwise these can stress your patellar tendon.  Relax and let gravity do the work.  If you're not sure how to do these, read old posts or just ask.  These are CRITICAL.  I find them much less irritating and painful than heel slides, because these engage my hip--and those muscles are super tight.
Patellar mobes - more than just the patella, be sure to move the patellar and quad tendons and massage the lateral and medial gutters (sides of the knee) in the direction of your thigh to help remove excess fluid/swelling.  When doing the mobes, it may be helpful to visualize the face of a clock as if it were super-imposed on your knee and being looked at by somene in front of you.  So the top of your knee is 12 o'clock, the bottom 6 o'clock, the medial joint line 9 o'clock and the lateral one 3 o'clock.  Move the kneecap in the direction of every number, starting from the center and going up to 12, then 1, then 2, etc.  HOLD the kneecap at each 'number' for at least three seconds--more if you can.  Once you've done that for about three minutes, move in quadarants--12 to 3, then 3 to 6, etc.  Hold at the 'numbers' for 10-20 seconds, then repeat, concentrating on the quadrants that have the least mobility.  For example, my side to side patellar movement (i.e. 9 o'clock to 3 o'clock) is quite good--it's the up and down or 6 to 12 that slays me.  My knee moves down to 6 fairly easily, as I have slight patella baja.  So I focus on moving from the 'center' of the clock up to 12 and HOLDING.  If you have trouble finding the margins of your patella, there are a couple of tricks: a) Lie on your bed and put your feet up on the headboard/wall for at least 20 minutes--this will help drain fluid.  Have someone massage the soft tissue around the knee, going from below the kneecap all the way to mid-quad in long, gentle strokes.  Always go toward the quad, because your body can absorb the excess fluid if it's there rather than around the knee.  b) ice first--it makes the mobes a bit tougher to do, but takes down the swelling so you can at least find your kneecap!  c)  Press down firmly on the very top of your kneecap, holding down firmly--this will tilt out the bottom of the kneecap, so you can get your fingers around it.  Press on the bottom to get to the top margins of the patella, define the edges, and grab them!  Begin mobes.  Try not to press down or grind the back of the kneecap into the joint when you do the mobes, because this will cause increased swelling and pain in most people.  Just move the patella so it glides just above and parallel to the other bones in the joint.
ankle pumps - this can be done while you are icing and elevating.  Point your toe, then flex it back toward your tibia, point and flex.  Turn your toes laterally and then medially, holding each direction for a few seconds.  Roll your ankle all the way around, forward and back.  Feel the tightness and then relaxation of your calf muscles--this will also help with swelling
quad sets - Do this in very specific order to protect the knee joint and keep from 'zapping' yourself with sharp pain.  a) gently and slowly contract your quad muscles.  Hold the contraction.  b)  while holding step "a" press the back of the kneecap into the floor/bed.  You may find it helpful to roll a small *washcloth* (nothing bigger) and place it behind your kneecap.  c)  while maintaining both steps "a" and "b" slowly lift your heel off the ground to try to get as much hyper-extension as possible.  The movement may be barely visible to the eye, but you will feel it and get benefits no matter how slight!  Some lift the heel as the press the back of the knee into the floor, as it is a natural extension (so to speak) of this motion.  d) Hold the contraction (remember, you are now doing steps "a" through "c" all together at the same time) for 10 seconds, then slowly relax the quad set.  e) DO THE STEPS IN REVERSE to get out of the quad set.  If you just relax everything in no particular order, you can actually cause sharp pain and 'zing' the knee.  So release step "c" then release "b" and then release "a" and you should do just fine.  It can take up to 20 seconds to do just ONE proper quad set.  You should probably be working up to doing 10 quad sets an hour.  Really push step "c" which is the extension and hyper-extension phase--this is critical, as it will help pump excess fluid out of the space under your kneecap and patellar tendon. 

If you are feeling up to it (no inordinate pain and swelling), you can add gentle spinning on a bike for a minute at a time.  Add time in 30 second increments only as your knee tolerates.  Be sure that the seat is not too low (don't want too much bend in the leg), you pedal very slowly (sometimes the bikes with the monitors or digital displays turn off because I'm going so slowly), and the resistance is set at ZERO.  Increasing resistance is considered strength training, and it absolutely should not be started until you have full ROM and swelling/heat/redness are gone from the knee.  I'm at 10 weeks post-op and was just given the go-ahead to move to level TWO on the bike.  For five minutes at a time, increasing in 30 second increments up to 15 minutes a day.  The bike is very good for you, but as with all powerful tools, it needs to be used judiciously.
1/23/2006 tore the ACL, MCL, meniscus, femoral nerve while  skiing
1/30/2006 ACL reconstruction hamstring graft, meniscus repair at Vail
4/2007 femoral nerve damage diagnosed
8/1/2007 LOA/MUA at Vail "severe arthrofibrosis"

Offline EdD

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JAKEM

Great advice from Heather.  I will reiterate a couple of things and offer a couple of suggestions.  Remember the single most important thing is patella mobes and the second most important thing is the CPM.  After that you need to be elevated and icing all the rest of the time.  I have done no standing or sitting, not even for 30 seconds.  I eat lying down, brush my teeth lying down etc.  You should be doing no standing or sitting ever.  You need to be flat on your back with your leg elevated any time you are not doing PT or CPM.

Don't be too upset about ROM.  If the doctor got you to 0 to 125 on the table, you can get back there.  What is holding you back now is swelling and that is normal.  As long as you keep icing/elevated, doing mobes, doing cpm, doing gentle prone hangs and wall sildes and quad sets and slrs, the scar tissue won't set up.  Yes, as Heather says it can be a long drawn out process but you will eventually win.

When you go to the doctor again, demand the following:

1) that they drain your knee
2) that they give you a cortisone shot
3) that they prescribe a powerful oral anti inflammatory
4) that they prescribe a cycle of Keflex to knock out any possible undetectable low grade infection.

You will have to be a little firm with them but they will submit.

If you go ahead and get surgery at some point, from my experience the key things are in order of importance:

1) drain installed for 24 hours after surgery.  You need to get all the blood out of there as blood is 10 times more likely to cause scar tissue than clear fluid.

2) cortisteroid during surgery followed by a 5 day cycle of oral steroids to shut down things as quickly as possible.  Also lots of pain killers in the joint during surgery to knock out the pain so you can do gentle ROM exercises immediately

3)  CPM for 6 weeks including immediately after surgery, you want to wake up in the CPM coming out of surgery.  Every study has shown that early motion is critical

4) patella mobes 5-10 times a day.  If that gets scarred down, you are done.  You need to relentlessly keep it moving.

5) Regaining full extension within the first 2 weeks by using extension bracing at night, prone hangs, pushing down with heel on towel or books.  When not doing CPM or PT keep leg fully extended by propping it up and elevating.  If you don't get at least close to full extension within 2 week you won't get it back.  You can gain some after 2 weeks but you need to be damn close by 2 weeks.

6) icing with cryocuff and elevation.  Ice continuously for 3-5 straight days, then take 1 hour between icing sessions after that.  The quicker you get rid of swelling, the less scar tissue you will end up with.

7) quad sets.  This combined with patella mobes is critical to prevent baja.

 wall slides for flexion.  This is the primary exercise for flexion.  It gains flexion gradually and is gentle enough (if done correctly) so that it won't shock the knee and cause scar tissue to grow back.  Overaggressive flexion work results in loss of flexion for people who are prone to scar tissue.

9) stationary bike with no resistance.  Again, motion is critical and this is a great way to get motion without the stress that will irritate the knee and cause more scarring.

10) Partial weightbearing with crutches for one week minimum.  No matter how good you feel you don't want to walk without crutches early as it is too irritating to the knee in the first week or two.

11) Cortisone shot at 1 month and a shot every month afterwards unti the heat and swelling shuts down.  You need these to shut down the heat cycle.

WILLP

I did two things that I think were crucial to my improvement. The first was to see a specialist Dr. If I hadn't made the trip to Vail, I guarantee that I wouldn't be posting this today. So many people on this board offer this advice, and I want to echo it. If you think you MIGHT have scar tissue, and you're able to, see one of the experts listed here.

The second thing I did was stick to my PT regimen rigidly. Through thick and thin. This meant doing PT 6 days a week. It meant having a very limited social life for most of this year, and getting horribly bored by the day in/day out routine. It meant doing wall slides and patella mobes in my office. It meant having days when I was sure the surgery hadn't really helped and when I felt horrible, physically and mentally. But Dr Steadman told me that there was no point in having the op unless I did the PT, so I didn't have a choice.


1/23/2006 tore the ACL, MCL, meniscus, femoral nerve while  skiing
1/30/2006 ACL reconstruction hamstring graft, meniscus repair at Vail
4/2007 femoral nerve damage diagnosed
8/1/2007 LOA/MUA at Vail "severe arthrofibrosis"

Offline EdD

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LAURIE:

I seem to be one of the only success stories for Athrofibrosis on this board.  Several people have asked me to post my story and problems and rehab protocol.  I’m not a doctor but I have lived through this and as of today I am 99% back to where I started.  I am running, skiing, hiking, biking, tap dancing, playing volleyball, etc; you get the picture.  So I’;m going to tell you how I did it.  You will have to make your own decision on what you choose to follow.

What is Arthrofibrosis of the knee?
Arthrofibrosis is scar tissue that forms in and around the knee.  Limiting the ROM and functionality of the knee.  In my particular case it formed very quickly ; within weeks.

Why do you get it?
Doctors don’t know why some people get it.  There is talk that it has to do with an auto immune disorder.  But to this day, doctors do not know why it happens to some people. It seems to be less than 1% of knee patients that do get it. 

How many doctors have seen it and know how to treat it?
Well if only 1% of knee patients get it, then only 1% of doctors have seen or worked with it.  Out of that 1% of doctors, how many have had successful outcomes treating patients?  Very few doctors have seen or worked with it.  Probably 5 doctors in all the United States.

What is the correct rehab protocol?
I know what worked for me.  I know it goes against what most (99%) doctors and PT people will tell you.  The correct rehab protocol is to not let the scar tissue reform.  How is this done?  By focusing on getting rid of all swelling and heat and getting your ROM back prior to ever starting strength training of any kind.  Don’ do anything that irritates the knee.  Always work in the pain free zone.  Then, after all the swelling and heat is gone you can add back strengthening exercises.  See the section The Post Surgical Arthrofibrosis Rehab Protocol below.

Do MUA - manipulations under anesthesia work?
In my opinion they do not work.  You can increase your ROM in the beginning, but then slowly over time the scar tissue that is there re-adheres.  My opinion is that you have to cut it out surgically.

How soon do you need to get the scar tissue out?
Heather made a good point about timing, which I thought I would mention.  It was 7 months from the time I had my initial surgery.  Some people wait years or even worse go through multiple surgeries prior to ever thinking about removing scar tissue.  Scar tissue will solidify and become very hard so I was lucky.  I got to it quickly.  My guess would be that you have less than a year once it starts to form before you have permanent damage.  Again, this is my opinion.  No hard facts or evidence.  Scar tissue can alter the function of your knee if left untreated.  It can cause patella baja, tracking problems and a whole host of other problems so you want to get it out as soon as possible.

The Post Surgical Arthrofibrosis Rehab Protocol that was given to me:

Ankle pumps.
Ankle ABCs
Wall Slides using the good leg to help the bad.
Straight leg raises, while sitting with my back against the wall.  10  3x a day.
Ride the bike with 0 resistance  15 - 20 minutes per day.
Patellar mobilizations  - 10 x day.
CPM machine  8 hours a day  for 6 weeks.
JAS brace for extension.
Ice and elevate above the heart.  Key here is above the heart!
Crutches for 1 week  no weight
Crutches for 2nd week partial weight bearing.
Lay on stomach on the bed with legs dangling off the edge of the bed to get extension.
Try to stretch the hamstring and quad every day.

Motrin / vicadin for swelling and pain.

All exercises are done in the pain free zone.
No strength training what so ever at this time.
The goal is to get rid of all swelling and obtain full extension and ROM without irritating the knee.
Do no more than what is on the list above.

This is what was said to me by Dr. S. about the rehab protocol:
Patellar mobilizations are #1.  If fluid forms under the kneecap and the kneecap gets adhered down, you are doomed, so do the patellar mobs. Your goal is to get rid of the swelling and heat. You can always get your strength back, but not always get your ROM so that is the focus.  All the exercises can be done in your home.  No need to go to PT unless you want to but do NO more than what is on the list.  Do nothing that irritates the knee.
1/23/2006 tore the ACL, MCL, meniscus, femoral nerve while  skiing
1/30/2006 ACL reconstruction hamstring graft, meniscus repair at Vail
4/2007 femoral nerve damage diagnosed
8/1/2007 LOA/MUA at Vail "severe arthrofibrosis"

Offline EdD

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HEATHER M (responding to Laurie)

I can't agree with you enough about the timing.  I actually have the results of two studies that show arthrofibrosis patients who had the scar tissue *successfully* addressed within six months of the surgery that caused it had outcomes comparable with the controls--i.e. comparable to people with normal knees.  So it seems like you both fell into that category AND had a doctor who knew just what he was doing.  I can't stress enough how important that is. 

Without Dr. S. I would no doubt be using a cane and/or crutches right now.  I had pretty much the same protocol with a few deviations--if you don't mind, I'll list them here.  The deviations in the protocol from patient to patient prove to me what a great OS Dr. S is, because he doesn't have a rigid protocol--he mixes things up based on the patient's unique situation.  We may all have scar tissue, but the underlying conditions--the ones we had surgery for in the first place--are very different and so that necessitates different treatment.  Also, some of us did have the onset of the dreaded patella baja and infrapatellar contracture, so we started out with bone on bone contact right out of the gate.

Anyway, my 'deviations' included:

1.  CPM for 18-20 hours a day for five straight weeks.  I was told to sleep in it.  I had it on 0-70 degrees when I was awake, and 30-70 while I slept.  Dr. Steadman said I was to be in it when I wasn't bathing, doing PT, eating, or driving in the car.  It made a HUGE difference.  A couple of times I woke up with the CPM shoved to the bottom of the bed (obviously I'd unwrapped myself during the night) and on those mornings my knee was twice as stiff and painful.  I had 135 degrees of flexion and 0 extension the day after surgery.  I went to 145 within 2-3 weeks, and could touch my heel to my behind at about 12 weeks post op (sit on my heels as in the child's pose from yoga).

2.  Crutches:  I was non-weight-bearing (not so much as toe-touch) for a week.  Then we tried to add 25% weight and flared the knee, so back on NWB status.  Every few days I was instructed (after Dr. S. had examined me in PT or consulted w/the therapist by phone) to try again with the toe touch weight-bearing.  I got up to 25% WB and then at 14 days post-op had a HUGE flare of swelling and severe pain in the patellar tendon and quads.  Back to NWB.  Then, when things didn't improve, I had an insufflation.

3.  2.5 weeks post-op from LOA, I had an insufflation to break up the scar tissue bands that had been observed in my quad and patellar tendon since about 2 days post-op.  I told the PT about them, he agreed, but the fellows kept saying it wasn't possible.  Dr. S. just said we'd keep an eye on it.  One day I saw him after PT at 6pm and he said if I were 'any other LOA patient' he'd do a cortisone injection.  But I'd had two separate post-op infections with previous surgeries, so he wouldn't take the chance.  So within 12 hours I was in the OR having an insufflation.  They heard the adhesions, especially the ones in my suprapatellar pouch, popping loudly during the procedure.  It helped a lot, and it is only after that procedure that I could contemplate full ROM--before I always had pulling and pain in the quad.

4.  I was not allowed to do home PT alone.  Dr. S. said he didn't want to operate unless I could stay in Vail until after the 'danger period' for infection had passed and until we got the swelling under control.  Another patient who had LOA the same morning I did was back in Wisconsin 3 days later (by plane!!).  So in my case Dr. S. was adamant about doing PT at Howard Head Sports Medicine twice a day for the first ten days (with 3-4 mini sessions at home, including someone gloving up and doing patellar mobes on me).  Then I went once a day to HH until my insufflation, after which I returned to 2x/day for formal PT.

5.  I did not have a JAS brace and did not have to hang off the bed or do the other torturous exercises for extension--as soon as he removed the nasty scar tissue from around the patellar tendon, I had full extension.  So I had to instead add exercises where I deliberately hyper-extended the leg and held it during quad sets.  This was less than fun, but critical.  The motion helps pump swelling out of places where it would like to settle and glom into scar tissue. 

6.  If I had a lot of pain or swelling when I arrived in PT, we would go back to basics.  This meant the hyper-extension exercise, patellar mobes, straight leg raises from a seated position w/back against the wall, wall slides, and hamstring stretch, along with maybe 2 minutes of slow rotations on recumbent bike.  Then we'd do anti-swelling treatments.

7.  PT always included phonophoresis (ultrasound with cortisone cream--absolute heaven!), tissue work with Bio-Freeze gel (also heavenly), and IF or e-stim set on the anti-swelling pulses during my ice down.  Like Laurie, I had to ice with knee above heart and ankle above knee--critical.

8.  I was not allowed to have cortisone, prednisone (the so-called dose-pack of steroidal anti-inflammatories taken for 6 days), or SYNVISC.  I was also not allowed to do acupuncture until about 16 weeks post-op due to infection concerns. 

My results were the same as Laurie's in terms of the eradication of scar tissue, restoration of FULL flexion and extension, and improvement in gait and function.  But I'm still greatly limited by bone on bone contact of my patella (it sank into the knee joint and is being pulled down toward the tibia by my hardened and unhealthy patellar tendon).  Plus, due to the long lag time before I was treated properly (I think it was a total of 16 months from the first surgery that caused all of my scar tissue) I developed deep chondral lesions, which is to say I have two areas of deep osteoarthritis on the back of my kneecap. My patellar tendon has shortened and hardened, and in some areas there was evidence of cell death (tendinosis).  This has caused patella baja, as I described above, so I'm essentially walking around on a partially dislocated kneecap. 

Neither the arthritic lesions nor the patella baja is a condition that responds well to treatment...that is to say that they are very, very difficult to repair.  If not impossible.  Even if I could have a knee replacement to deal with the chondral lesions, you still have to keep your kneecap and patellar tendon for the TKR...and they are a huge part of my problem.

So my function and all of my knee measurements for ROM and such are MUCH, MUCH better than before I saw Dr. Steadman.  But my pain levels are worse, though it has nothing to do with the procedure he did.  It's the roughened cartilage and deep lesions on the back of my kneecap.  And I was hit directly in my bad knee by a very large, very excited 80 pound Dalmation at top speed.  That happened last Thanksgiving.  The knee hyper-extended when the dog's shoulder hit it, then was hit by the dog's hindquarters in that position, causing it to wobble in an excruciating fashion and then collapse.  The MRI hasn't shown anything but effusion.  Surprise, surprise.  But I'm pretty sure there's something ugly going on in there--or maybe it's just that the inflammatory phase that follows trauma or surgery has set in again.  I'm looking at my options, but Dr. S. told me last time I saw him that he could do little to fix the patella baja.  He wanted to take another look to make sure the scar tissue wasn't back, but he felt pretty confident that it was not causing my pain.  I may see him again in the Fall.  Right now, I'm dealing with big deadlines and a lot of work for the next 2 months, so I just can't deal with the knee right now.

Anyway, I would really urge anyone dealing with scar tissue to follow Laurie's example, and not mine.  I had a fantastic surgeon--the one all the other surgeons in my city of 3 million would go to see if they had knee issues.  He did the sports teams, the other doctors in town, and was a wonderful and caring doctor.  The first surgeon I've ever really liked!  But he had no experience with severe, recurring arthrofibrosis.  And so we went back again and again to cut the scar tissue out...then watched helplessly as it grew back despite our best efforts and aggressive PT.  Of course, now I know what the problem was--the post-op protocol was all wrong.  But I kept trusting the doctor.  Who wants to believe their doctor can't treat their problem?  So I did five procedures in about 12 months (from 8/01 to 7/02).  Then in the fall of 2002 I saw Dr. Steadman.  He knew exactly what the problem was and said that he could improve my function and quality of life.  He hoped that the patella baja was a recent thing, but it had been identified in my 2/02 surgery, so I'd had it for at least a few months by that point...probably almost a year by the time I saw Dr. S.  The tendon was necrotic in some places from the scar tissue trauma.  He's an incredible surgeon, but even he can't reverse cell death.

Still, I am much improved.  I can garden, go to the mall, and even spent the last week at a convention in Dallas on my feet much of the day.  But I pay for it later.  This can't go on forever, and I've got some big decisions to make. 

Like I said, you should learn from Laurie's example.  Don't be afraid to fire a doctor who hasn't made you better, or who makes you worse.  Especially if you find you have a rare condition.  We sat down recently and did the math and figured an excellent, highly regarded OS in his/her mid-50's would probably see maybe two cases of severe and recurring arthrofibrosis in his career.  And so this hypothetical doctor would probably not know any better than to treat those two arthrofibrosis patients as all other knee surgery patients are treated.  The protocol just doesn't work if you have the tendency to form lots of scar tissue, though.  So the doctor is baffled and frustrated...s/he has done all they can to help and you're still not better.  Then they start throwing around words like RSD, nerve damage, patient non-compliance with PT, patient isn't working hard enough, patient has phantom pain (my personal favorite), or patient just needs to work harder in PT.  Dr. S. assured me that many of his scar tissue patients have been referred to psychiatrists because they were told there was nothing wrong with their knees!!  Don't believe it.  Find someone (one of the small handful here in the US) who understands this condition.  Because the more surgeries you have to remove scar tissue, and the longer it sits in your knee, the lower your chances for a full recovery.

1/23/2006 tore the ACL, MCL, meniscus, femoral nerve while  skiing
1/30/2006 ACL reconstruction hamstring graft, meniscus repair at Vail
4/2007 femoral nerve damage diagnosed
8/1/2007 LOA/MUA at Vail "severe arthrofibrosis"

Offline Jaci

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Hello Edward,

Great idea! Thanks for putting all this info together. This is defintely a must read for anyone dealing with arthrofibrosis.


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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I've posted this thread over to the" Great Threads of Arthrofibrosis" on the Community Hub, so it can be always available for AF info.

Thanks again Edward for all this hard, time consuming work.  ;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 starpolisher

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My orthopedic surgeon in NY (Hosp for Special Surgery) has been working with a lab out of Wayne State University (Detroit, MI) and had me tested for allergies/reactions to chemicals in the knee implants (had a double knee implant 3 years ago in a regular general hospital).  I had told him I was a highly sensitive person and reacrted to many meds, chemicals, etc.  He had my blood tested by the lab and it came back highly reactive to the cement.  I have never gotten above 70 degrees range of motion.  Within the first month I was 100 and my therapist said I am making scar tissue like a "normal" individual after surgery.  He told me not to worry as I was doing very well and in fact this knee feels far etter than either of my knees have in 3 years.  He thinks the arthrofibrosis was due to an inflammatory reaction to the cement. 

He gave me a "state of the art" knee with no cement in it.  I seem to be responding much better!  I need the other knee done but for the first time in 3 years I have hope that perhaps this nightmare will end at some point. 

Has anyone heard of this?  My surgeon is Edwin Su and he has had experience only once before with a patient who produced huge quantities of scar tissue.  He was also allergic to the cement and the knee was removed and a knee without cement was used and the scar tissue production stopped.  My fingers are crossed!  He said many doctors don't accept his theory but he says he has seen enough to believe this.  He photographed the entire procedure and will write it up in an orthopedic journal.  You can imagine how anxious I am that he is right and this works.  I will keep you updated.

Offline missmyknee

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Yes, I have heard of allergies to the cement. In fact I also read a precurser to that are those allergic to the adhesive used in fake fingernails. I read where the chemicals in the nail adhesive are the same for cement used in TKRs.

I'm glad you found out the cause and had it replaced with a cement free one. You hit the jackpot finding an OS that has suffered the exact same problem with his own TKR. That is 1 in a million with this rare complication.

I hope you go on to enjoy your new knee  ;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 starpolisher

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Dear Pam,
thank you so much.  I am hoping that the scar tissue will not come back!  I need one more knee done.  It's early in the process....just under 2 months after surgery with this new knee replacement but it feels so much better.  I always had this feeling like someone was squeezing both knees.  My therapists would comment that it felt like I had rocks in my knees.  This new knee feels so much better.  After 2 failed operations, naturally I am nervous.  I hope to God this is the cause of my problems and that it will help some other people too!

I remember a thread on these boards asking what do we have in common besides arthrofibrosis and a number of responses mentioned chemical sensitivities.  I have to use dye free, perfume free laundry detergent, dryer cloths......cleaning chemicals make me sick.  I have had my gall bladder removed and a C section and never made abnormal scar tissue.  I really hope others are helped.  I know how frightening and depressing arthrofibrosis is. 

Let me know if you want the address for lab in Michigan in case people want to give it to their physicians....especially if you are very allergy prone.

Offline Janet

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Star:

This is really interesting. You should post it in the TKR section, too, because it might help someone there who is looking for info after a failed TKR.

Good luck to you! I hope your recovery continues smoothly.

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 starpolisher

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Thanks Janet, I'll post that on the TKR section.  I have to admit I have not been good about reading a lot of these boards.  So many health issues in our family.  While I seem to be much better, it's only 2 months after surgery and i am so nervous it will come back.  Normal I guess. My son has been sick a long time and finally getting better and possibly will be able to go to college in January.  He's already accepted but out of state, have to find him doctor for his disorder we share.....life is so complicated. 

I hope they find the answer to this.  I hope my answer is allergy.  Will keep in touch.















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