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Author Topic: How to beat Arthrofibrosis  (Read 16093 times)

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Offline Jakem

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How to beat Arthrofibrosis
« on: July 20, 2008, 02:18:48 AM »
My success story after a long battle with arthrofibrosis is here:

http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=17217.0

Here is what I learned:

1)  If you develop arthrofibrosis (scar tissue) in the knee and it limits your range of motion with extension deficit of more than 2 degrees and/or a flexion deficit of less than 120 degrees, you must have LOA surgery.  Manipulation (without first surgically removing scar tissue will make it worse).  No amount of PT will fix your problem, all though many ill informed doctors and PTs will tell you that and some will even call you a baby.  The harder you push, the worst the arthrofibrosis will get as which happened to me.  If you wait more than 4-6 months before having the LOA surgery, as I did, you will incur permanent cartilage damage under your patella and on the trochlea.

2)  You must have surgery by a doctor that is an expert on arthrofibrosis.  At least 95% of orthopedic knee surgeons donít know how to deal with arthrofibrosis and will make it worse. 

3)  Getting the right doctor is only about 25% of the battle.  The rest is up to you and it will be one hellava long hard struggle that is going to take every ounce of mental, physical and emotional energy you got and more for the next several months after the surgery.  Read my whole thread here if you don't believe me.  Donít rely on a PT.  You need to study arthrofibrosis literature and become and expert.  You need to study all the PT items I list below and learn to become an expert on each them.  You have to do the PT yourself, donít rely on a regular PT visits.  Most of them have no idea how to treat this dreadful disease and you have to do most of it on your own anyway.  I never once saw a PT and Laurie, one of the very few other success stories, never saw a PT.  We did it 100% on our own which is the best way.  The fact we 2 are the rare success stories and we both never saw a professional PT following LOA surgery speaks volumes.  You must beat this, it is your life.  Learn the routine below and learn on your own exactly how to do each one of them and do them.

4)  You must have the doctor install a drain for 24 hours after surgery.  Demand it.  If he wonít do it, you got the wrong doctor.  If you donít do this, everything else you do wonít matter.  LOA causes massive bleeding.  You need to get all the blood out of there as blood is 10 times more likely to cause scar tissue than clear fluid.

5)  You need the doctor to give you a 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.

6)  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.  Insist the doctor puts you into the CPM right after surgery and have another one already set up at home so as soon as you get home from surgery you are right in it.  You need to do it 8-10 hours a day.  I believe 2 hours at a time followed by PT followed by 2 hours of CPM followed by PT is better than 8 hours continuous at night.

7) patella mobes 5-10 times a day.  If that gets scarred down, you are done.  You need to relentlessly keep it moving and do it in all directions.  You also have to stretch the patella tendon and you need a family member to do this for you.

 Regaining full extension within the first 2 weeks by using extension bracing at night, prone hangs, pushing down with heel on towel or books and using a commercial extension device.  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.  Others will tell you this is not true, but it is true.  Early post surgery, extension is far more important than flexion.

9) Icing with cryocuff and elevation.  Ice continuously for 3-5 straight days, then take 1 hour between 20 minute icing sessions after that.  The quicker you get rid of swelling, the less scar tissue you will end up with.

10)  Quad sets.  This combined with patella mobes and patella tendon stretches is critical to prevent baja or shortening of the patella tendon.

11)  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 regrowth of scar tissue and loss of flexion for people who are prone to scar tissue.  Here is where a professional PT will screw you up.  Only you know what you can do.  There will be discomfort but not pain if you do it right.

12)  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.  Donít add any resistance as this is strength training and you should do no strength training at this point.

13)   Partial weight bearing 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.  Pain and irritation cause scar tissue to grow back.  Walk with emphasis on full extension, focus on extension with each step.

14)  Gentle massage of the quad tendon, patella tendon and near the incisions and any area that has swelling, several times a day.

15)  Cortisone shot at 1 month and a shot every month afterwards until the heat and swelling shuts down.  You need these to shut down the heat cycle.  Demand your doctor gives you these.

16)  Donít consider any strength training of any kind other than the above until you get all heat gone, get all swelling gone and all pain gone and all of your range of motion or nearly all of it back.  Start strength training too soon and the scar tissue will grow back.  This will take at least 1 month and more likely many, many months.  You will be stuck in the same routine for many months before you begin strength training.

17)  Take glucosimine/condroitin to repair the cartilage defects caused by the scar tissue.

18)  Once you got all heat gone, all swelling gone, all pain gone and nearly all ROM back, then start strength training.  Read through my entire 11 page thread to learn how to progress with strength training once it is time.

I hope this helps someone out there!
« Last Edit: July 20, 2008, 02:20:25 AM by Jakem »

Offline missmyknee

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Re: How to beat Arthrofibrosis
« Reply #1 on: July 21, 2008, 05:56:07 AM »
Hi Jake

What a great post ! You have really done a great job of explaining the difficulty and total dedication it takes to try and beat it. I will add this to the "Great Threads of Arthrofibrosis" in the Community Hub.

Thanks for taking the time to post this.  ;D   I hope your recovery continues.

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 joew

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Re: How to beat Arthrofibrosis
« Reply #2 on: July 21, 2008, 06:11:48 AM »
Jake,

Great info, but I believe there are some exceptions to your list for paragraphs 4, 5, and 6.   

I had my LOA with Dr Steadman and he did not install a drain.  It was not needed because he removes the scar tissue by burning it with a special instrument and this cauterizes the area so it does not bleed. 

I also did not have any cortisteroids during or after the surgery.

I uised the CPM for nine nights, although I agree that more will not hurt and can only help.  I was prescribed to have it for 14 nights, but I was leaving Vail after nine and Steady said that was good enough.

Like I said, I think you have compiled a great list here, but everyone is different and depending on how bad one's AF is, there is no one absolute treatment methodology.

Joe
7/02: ACL and medial meniscus tear playing basketball
9/02: ACLR; meniscus repair (local OS)
2003-2005: Patella grinding and pain after surgery.
12/05: Scope. Patella and trochlear groove debridement (kissing lesion).† Partial medial meniscectomy. (local OS)
5/07:† LOA/AIR, plica removal (Vail)

Offline Jakem

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Re: How to beat Arthrofibrosis
« Reply #3 on: July 21, 2008, 05:53:49 PM »
Joe,

What you say is quite true, every case is different and yes you can succeed without doing EVERYTHING I list.  I am trying to provide an ideal rehab strategy that people can strive for such that even if they don't do everything but do most things they may still succeed.

Pam,

Thanks and good luck to you!

Offline Janet

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Re: How to beat Arthrofibrosis
« Reply #4 on: July 22, 2008, 12:59:08 PM »
Jake:

I also did not use a CPM at all. My OS doesn't believe they're always necessary, and I must agree since it worked for me. I didn't have cortisone until four months post-op. So the point is well taken that you won't automatically have a bad outcome if you don't do everything you list. And sometimes even doing everything right will still end up with the scar tissue regrowing....just ask Pam! But all in all, your post is very informative and helpful. Thanks for taking the time to post it all.

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 Nathan1

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Re: How to beat Arthrofibrosis
« Reply #5 on: July 24, 2008, 04:09:47 AM »
I had a TKR on 5-27-08 and have recovered nicely except that my bending range of motion is restricted to 113-120 degrees, depending on the day. My OS seems totally unconcerned with this as does my PT. I am hiking, climbing steep, rocky terrain, swimming 1/4 mile at a lake in a measured lap lane, and seem to be way ahead of most TKR patients. I still can't ride a conventional bicycle ( I can use a stationary bike ). I'm 47 and do not wish to be more crippled after my TKR surgery than I was before. I realize that I will have give up kickboxing, but I refuse to give up bicycling. My surgeon and physical therapist seem to believe that my range of motion will improve gradually, but I am reluctant to believe that. Last week my PT tried to force my leg to bend ( at my urging ), and hurt me very badly. I had to resume taking Percocet for pain and reduced my activity level for a whole week. He put all the weight he could muster on my leg and couldn't budge it. It's frozen right where it is. I intend to take a printed copy of Jake's story with me to see my OS in two days. I'll show it to him if I have to.  I can't afford to horse around with this knee business- I'm not retired, I have to get back to work. If I wait to have surgery for my scar tissue I will lose whatever job I have at the time and will have to start all over looking for yet another job. I was a flooring contractor, but that is apparently over. My wife thinks I am making a big deal out of this range of motion thing for nothing. 
                                          Nathan

Offline Roma

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Re: How to beat Arthrofibrosis
« Reply #6 on: July 24, 2008, 02:27:07 PM »
Jakem,

I read your article with interest, but my question is what if you have had several TKRs with scar tissue returning after each one.  It is my understanding that you cannot have cortisone shots or anything injected into the knee because of the danger of infection.  I am about desperate at this point to find some answers and an OS that would even be willing to listen to me or read and article such as what you have written.  I live in an area where arthrofibrosis is seldom dealt with so the attitude is that you just will  have to learn to live with it.  You can read my story under the post about pain medications.  Thanks!

Roma

Offline missmyknee

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Re: How to beat Arthrofibrosis
« Reply #7 on: July 24, 2008, 06:18:46 PM »
Roma

I've had cortisone injected for scar tissue, about 9-10 times since my TKR in 2005, plus numerous medrol dose paks, and high dose celebrex. I've had scar tissue removed thru open surgery, 5 times since TKR . I have one the OSs who is expert in Arthrofibrosis and I was told I did not need to worry about any higher risk for infection.


Jake

I posted this thread on the Great Threads of Arthrofibrosis in the Community Hub  ;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 Roma

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Re: How to beat Arthrofibrosis
« Reply #8 on: July 25, 2008, 04:04:46 AM »
Hi Pam,

Did having the cortisone shots help relieve the pain?  Who removed your scar tissue?  How are you doing now?  I had my first knee surgerys in 2003 ( it hardly seems possible) so I have been struggling for over 5 years.  How much celebrex did you take each day?  I tried celebrex a few months ago, but it didn't do anything for my pain, however, I was only taking 200 mg. a day.  Like I say, the doctors in my area know little about all this and my doctor didn't even tell me that celebrex might help my scar tissue. I would be interested in hearing from you.

Thanks!

Roma

Offline Janet

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Re: How to beat Arthrofibrosis
« Reply #9 on: July 25, 2008, 12:59:09 PM »
Nathan:

You may find your flexion to be a problem, but your OS won't. They consider anything below 90 a failure, and anything 110 and above a success. You cannot expect to have a TKR and have a normal knee and resume normal activities. If your OS didn't tell you that before your surgery, that's too bad.

AS for continuing to improve, you are doing amazingly well for only having had your surgery in May. You realize that, don't you? That's only two months out! I had to reread your surgery date three times to believe it. At two months, I was still barely moving. Anyway, my OS told me I could continue to gain ROM for two years, slowly but surely. That hasn't happened for me, but it has held true for others. You are not fully healed from a TKR for 18-24 months, so don't despair.

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 Jakem

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Re: How to beat Arthrofibrosis
« Reply #10 on: July 25, 2008, 03:53:29 PM »
Nathan,

A few things:

1) Dealing with scar tissue post TKR is somewhat different and I am no expert on that and protocols can be different.
2) I am going to have to agree with Janet on both accounts.  Firstly, you are actually doing very well.  Secondly, unlike with extension, flexion can continue to improve over several months, especially is you still have swelling.

Roma,

Your doctor is correct that there is an increased risk of infection with cortisone shots.  So if you have a history of getting infections easy, you don't want to take the risk.  However, if you are several weeks out from surgery, with no sign of infection and no history of infection, I think cortisone would help, but again I am not as familiar with TKR protocols.

Offline missmyknee

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Re: How to beat Arthrofibrosis
« Reply #11 on: July 26, 2008, 05:17:11 AM »
Roma

The cortisone shots didn't do a whole lot for pain but they did help cut down the heat and swelling in the knee. Sometimes it was done to possibly soften early scar tissue. They were done as part of the treatment process before having to go to surgery to remove the scar tissue.The Celebrex was part of the treatment for the inflamamatory stage. I was place on it right out of surgery. I was on 200mg 2x's /day for a week then 200mg once a day for a week and alternated this for 3 months. Now I am on 200 mg /day. I had found an article I posted on your medication thread about a study done for adhesion prevention. Celebrex was one of the meds tested and performed the best in preventing fibroblast formation. I also took several medrol dose paks which really knocked out the heat and swelling much better than cortisone. Currently I am on Celebrex to keep the inflammation down and getting ultra sound then 25 min of very deep, painful, tissue massage each PT session. I use ice, and pain meds and TENS for pain but aren't helping much so I am starting pain management next week.

Dr Noyes has been treating me since 04 and has removed scar tissue 5 times since tkr.

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 debbied

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Re: How to beat Arthrofibrosis
« Reply #12 on: February 22, 2010, 05:51:41 PM »
Hi Jake,
quick question:
my extension is about-1 cold. my PT massaged my patella for a bit and produced full extension. i am 5 weeks post op plica resection. do you think i will ever be able to gain full extension and if so how do i do it? (i did PT from day of op but didn't realise i should have books under my heal and just pushed down flat to get extension)
thanks v. much (your story is inspiring and informative)

Offline Jiujiteira

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Re: How to beat Arthrofibrosis
« Reply #13 on: May 28, 2018, 02:49:25 AM »
Jake:

I am desperate. I have had AF in my right knee for 6 months now. My bend is 46 degrees on a good day. This all started when I got injured training for the World championships for Jiu-Jitsu Nov Ď17.

December 2017- ACL Reconstructive surgery (cadaver graft)
January 2018- manipulation
February 2018- Manipulation
March 2018- manipulation and scope
April 2018- pateller tendon reconstructive surgery (The pateller tear was overlooked on the Dec 2017 MRI, thus fully rupturing from the tibia during the third manip.) A drain was used but removed once I was discharged from the hospital.

I immediately began pre-Hab before the first surgery. I have been faithful to my PT appointments. I also receive medical massage weekly as well as cupping a dry needling.
I have a pirate leg that shows no signs of bending. I am seeing an AF specialist next month. What questions should I ask? How do I help myself? Will I walk again? Did I mention I am desperate?!
« Last Edit: May 28, 2018, 10:25:56 PM by Jiujiteira »

Offline DogfacedGirl

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Re: How to beat Arthrofibrosis
« Reply #14 on: May 31, 2018, 08:26:07 AM »
Hi,

Wow, that's a very unfortunate story!! I understand what you're going through. Jake hasn't been posting for years, but the advice he gave was good. Get onto corticosteroids asap, that is really important, and as Jake said, be very careful with PT, if you push too hard it will make things worse. I would avoid quad squats at this point, and anything that hurts, pain afterwards is a sign you shouldn't do that again. Be prepared to stand your ground on that, some PTs don't understand how important it is.

In my own experience, the only way to improve bend and stop it from getting worse is to do as much CPM as you can. This means getting a CPM, either hire or purchase - I found purchase was required because I needed it for a long time, I bought a second hand one on Ebay. Make sure its computer controlled, and spend all day on it if you can, and even all night. That's what I did. I improved to 90 o active bend and I can manage now with about 45 mins of daily CPM, but hopefully your condition won't be permanent. I have posted about CPM use before, you do need to take it slowly and carefully. If you click on "Dogfacedgirl" then you will be able to click on "show posts" and read what I have said.

The other thing that I suggest is to try metformin and/or ketotifen. These have been used extensively for other conditions and have well-known safety profiles. Their use for arthrofibrosis is not well established, but the science of how they work suggests that they should help, and there is some evidence that metformin helps with arthrofibrosis by down regulating TGF B. I will most likely try metformin, my rheumatologist is open to discussing it so I'm waiting for an appointment. But your specialist probably won't know about it, I can post references later if you need them.

And if you're currently taking NSAIDS like Nufrofen I suggest that you stop, as recent science shows that these prolong inflammation by stopping the production of resolvins. I have posted about this before, and I won't repeat myself now, but if you want more info on any of this, let me know.

Take care,
Kay

1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis