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Offline Laurie

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Arthrofibrosis Success Story
« on: August 03, 2004, 07:10:25 AM »
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’t 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.

Continued ...
Laurie :)

Offline Laurie

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Re: Arthrofibrosis Success Story
« Reply #1 on: August 03, 2004, 07:11:58 AM »
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.



My Story:
In April of 2001 I had ACL from patellar tendon, and Repaired meniscus and a repaired PCL – which was repaired by the laser.  He used the new inovasive screws – not darts for the acl surgery.   Things went horribly wrong from the get go.  Mistakes were made.  

Mistakes:
1.      No CPM machine
2.      No decent icing mechanism
3.      No instructions for rehab – passive.

So, within the 1st month, I had so much swelling that I could not bend or straighten the knee.  My extension I believe was at 10 and my flexion was 95.  
I fired the 1st Dr. who did the surgery.

The 2nd Dr.  ordered a CPM machine and I started in a JAS brace for extension.  She wanted to do a MUA- manipulation under anesthesia. I had this in September of 2001.   This did not work in the long run.  In my opinion it was a complete waste of time and was probably more damaging to the knee – since it has the potential to tear muscles along with the scar tissue.  After the manipulation my extension was still 10 and my flexion at one point went up to 120, which I did not keep.
I fired the 2nd Dr. who did the MUA.

Now, I searched for a new Dr. I talked to 6 other Dr.s  All said that there wasn’t anything they could do.  That I wasn’t working hard enough, that I just needed to give it more time.  Keep in mind I am walking with a severe limp at 10 degrees and have only 95 flexion.  The knee is swelled the size of a large Cantaloupe, I had constant pain.  There was soooo much heat coming from the knee.  It was HOT.  I have pain shooting down the back of my calf – nerve pain.  Pain in the rear part of the knee.  Pain in the front medial side of the knee.  I cannot do a stair step either up or down,  etc…  Now, because of all the problems with the knee and limping for so long I now have back problems and my foot is killing me.  Sound familiar to anyone…..

Continued ...
Laurie :)

Offline Laurie

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Re: Arthrofibrosis Success Story
« Reply #2 on: August 03, 2004, 07:13:17 AM »
I finally find Dr. Steadman (i.e Dr. S) in Vail Colorado.  He took one look at he knee and said it was an absolute disaster.  Yeah, finally somebody who agreed with me.  He didn’t patronize me.  He didn’t talk down to me.  He just said, it’s scar tissue and we have to cut it out.  MUA do not work although that is the standard practice in the US.  I confirmed that they didn’t work, because I had already had one.  There are several things that Dr. S did.  He tested for infection by drawing a sample of blood.  This was negative.  He tested the nerve – peroneal nerve.  It was confirmed that something was impinging it, but we did not know what.  They diagnosed it as “neuropraxia”.  It could be due to swelling or there could be damage, etc…

I had the scar tissue removal on November 12th of 2001 in Vail by Dr. S..  He said at the time it was the 2nd worst case of arthrofibrosis he had ever seen.  He was calling in Dr.s to take a look at it while I was on the table.  The technical terms for what I had done is: Lysis of adhesions in the suprapatellar pouch, lysis of adhesions and excision of post surgical scar, infrapatellar plica and anterior interval, anterior interval release. I stayed in the hospital for 1 day – overnight and I was on a CPM machine.  The doctor came to see me in the hospital that night after the surgery to tell me how things went.  Yes the doctor actually came to see a patient.  The next day I started his arthrofibrosis protocol at the Howard Head Sports Medicine center in Vail, which is in the hospital complex.
Directly after surgery I had 5 degrees extension and 120 degrees flexion.  He gave me a DuraKold knee wrap for icing.  These are great – you can get them at www.durakold.com.

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

Ankle pumps.
Ankle ABC’s
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.

Laurie :)

Offline Laurie

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Re: Arthrofibrosis Success Story
« Reply #3 on: August 03, 2004, 07:14:34 AM »
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.

On December 12th  2001– 4 weeks later I went for my 1st post op.  I was concerned that the scar tissue was reforming.  The knee was very swollen still and starting to get very stiff again.  There was a lot of heat still in the knee.  They gave me a Cortisone shot to help stop the scar tissue from returning.  This really helped.  I think in hindsight it is probably what saved me from having another surgery.
There was no change in my PT protocol. No strength training – just stretching and ROM.  Extension was 3 degrees, Flexion was 130.

On January 10th  2002– 4 weeks later I was still having significant amounts of heat, swelling and stiffness.  I received the 1st of 3 synvisc shots over the next 3 weeks.  Please note that the 1st synvisc shot also contains cortisone  so essentially this was my 2nd cortisone shot.  
There was no change in my PT protocol. No strength training – just stretching and ROM.
Extension was 0 and flexion was 135.

On February 5th  2002– 4 weeks later I saw the Dr. again.  No change in PT protocol since I was still having significant amounts of heat, swelling and stiffness and pain shooting down the back of the calf.  We did add acupuncture at this time for the nerve pain in the rear of the knee shooting down the calf.   I went roughly 10 times.  On the 4th time the acupuncturist found the nerve pain and turned it off.  To this day it is good. There was no change in my PT protocol. No strength training – just stretching and ROM.  
I could add the Aqua Jogger in the pool.  I did this and found that it irritated the knee.
Extension was 0 and flexion was 135.


On March 14th 2002– 4 weeks later I saw the Dr. again.  Still complaining of the same things. Heat, swelling not improving on my ROM.  Although the tests for infection were negative we tried 10 days of 500 mg Augmentin – an antibiotic – due to all the heat still in the knee.  This was by far one of the biggest improvements I had.  Day 3 of the antibiotics and I had NO heat in the knee.  It was a miracle. I would say that 80% of the heat was gone.  My notes indicate that 2 weeks after the antibiotic ended I started to get a tiny bit of heat to return, but nothing like the caliber that was there before.  After the heat subsided, the swelling started to go down.  
There was no change in my PT protocol. No strength training – just stretching and ROM.  
I would try to sit on my ankles – childs pose – to get the remaining amount of ROM.  Once the swelling subsided I was able to get all the way.  I can now sit on my ankles.  
Extension was 0 and flexion was 150.

Continued ...
Laurie :)

Offline Laurie

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Re: Arthrofibrosis Success Story
« Reply #4 on: August 03, 2004, 07:16:40 AM »
On May 14th  2002  -- 8 weeks later I saw the Dr. again.  Very pleased with how things are going but still does not want to release me for strength training yet.  He feels that starting too soon will irritate the knee and start the entire process of swelling and heat over.
There was no change in my PT protocol. No strength training – just stretching and ROM.
Extension was 0 and flexion was 150.


In July 2002– 8 weeks later I saw the Dr. again.  Finally released me for strength training.  Must work in the pain free zone.  If I do anything which irritates the knee at that moment or the following day then I need to go slower.  Slow and consistent.
We added walking on the treadmill at 7% grade.  Elliptical trainer – level 2, Ride the bike level 1.  Leg press machine – 30 lbs, swimming with kick board.  More straight leg raises.  I did a combination of these 5 x a week.
In the beginning this was all too much.  My knee became very irritated.  So I backed off and got into a rhythm that did not irritate the knee.  At this point I went to PT at a local place to make sure I was doing the strength exercises in the proper positions, etc..
PT protocol included strength training, plus stretching.
Extension was 0 and flexion was 150.


In August of 2002 I found out I was pregnant.  I continued with the PT and strength training.

January of 2003 --I still had swelling and weakness and pain issues.  The biggest problem was going down stairs.  I had pain on the medial side of the patella.  I started to do step downs in the pain free zone.  I had to start with a book that was less than 1 inch thick, anything larger caused pain, that’s how weak that area of the knee was.  I did 4 sets of 25 5 x a week.  Gradually over time I increased the thickness of the book.  I can now do a full step.  It took about 4 – 5 months of doing these exercises before I had no pain and could do a full step.
PT protocol included strength training, plus stretching.
Extension was 0 and flexion was 150.

I continued with the strength training.  It went very slowly.  It seemed as if every time I added weight – it would irritate the knee and I would get swelling again so I had to back off.  This process has continued to this day.  It is now February 2004 and I am currently doing all the activities I did prior to surgery.  I am running, biking, hiking, skiing, volleyball, tap dancing, etc… and I have No pain.

I currently Run, Stairmaster, Leg Press – 160lbs, Leg Extensions 50lbs, Hamstring Curls 50lbs, Ball Lunges with free weights 15lbs in each hand and all is well.

So, as you can see it has been a very long road.  It took from November of 2001 – November of 2003 to say that I am completely back to where I was before.  My advice is to go slow, don’t ever irritate the knee to cause swelling and/or heat.  Be persistent, diligent and patient.  


Good Luck to everyone and I hope this helps.

Sorry it was sooo long, but people e-mail me the same questions over and over so I thought I would just put it all in one document.

Laurie :)
Laurie :)

Offline BBall12

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Re: Arthrofibrosis Success Story
« Reply #5 on: August 03, 2004, 09:21:23 AM »
Thanks laurie that helps alot.  Great story and helps me out in what i need to do.
Thanks again

Offline Heather M.

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Re: Arthrofibrosis Success Story
« Reply #6 on: August 03, 2004, 09:39:55 AM »
Thanks for compiling all that in the same place.

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.  

Cont'd
« Last Edit: August 03, 2004, 09:52:44 AM by hmaxwell »
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
http://www.flickr.com/photos/hmaxwell

Offline Heather M.

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Re: Arthrofibrosis Success Story
« Reply #7 on: August 03, 2004, 09:41:16 AM »
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.

Heather
« Last Edit: August 03, 2004, 09:54:18 AM by hmaxwell »
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
http://www.flickr.com/photos/hmaxwell

Offline pxs

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Re: Arthrofibrosis Success Story
« Reply #8 on: August 03, 2004, 04:44:07 PM »
thank you for posting all of this information here.  but i am wondering when in your post-surgical course you should become concerned about a-f.  i am 6 weeks since surgery (10 weeks since injury) and have significant swelling and warmth and have reached just 80 degrees flexion. my surgery was to repair medial retinaculum tear from a nasty dislocation.  there was some quad tendon and vmo tearing too, and my vmo was advanced as part of the surgery.  i aslo had partial meniscectomy and chondroplasty.   my fomral p-t did not start until 4 weeks after surgery and in the 2 weeks since i have gone from 60 degrees to 80 degrees in my p-t appointments.  when do you stop believing you have normal post-surgery swelling and stiffness that further p-t and quieting down of the joint will address?  the rom limitations feel liike they are internal too the joint - is this the fluild and scar tissue in there? my patella moves pretty easily, especially left to right, not as easily up and down.

Offline Laurie

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Re: Arthrofibrosis Success Story
« Reply #9 on: August 03, 2004, 09:27:54 PM »
I knew I had a problem within the first couple months.

Everybody has to make their own decisions.  I only know what my knee did and how it felt.  Go with your gut instinct.  If you think there is something wrong then question it.

Your patella should move left/right AND up and down.  Don't forget to move the tendon too.

4 weeks before starting pt seems like a long time.
Why did you wait so long?
Or, are you saying before you started "formal" pt.  You were doing things at home for ROM prior to the 4 weeks right?

My advise would be to keep the knee moving.  CPM, riding bike with NO resistance.  ( I did NOT say low resistance, NO resistance-- for people who ask me.)

You probably still have fluid in there, but don't let it get staginate and solidify.

Good Luck.

L
Laurie :)

Offline pxs

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Re: Arthrofibrosis Success Story
« Reply #10 on: August 03, 2004, 09:44:55 PM »
i was doing quad sets, ankle pumps, and leg raises immediately after surgery at home, and doing occasional motion but only to the 40 degrees my brace allowed when not locked straight.  i assumed i would start formal p/t after 2 weeks but my dr. looked at my knee and said to wait 2 more weeks.  at that time he adjusted the brace to allow 60 degrees when not locked straight for walking after 2 weeks but still I was not told to try and get beyond 60 until starting formal p/t.  supposedly he got me full rom to match the other leg during the surgery but then i had to wait so long to try and get it back i have a long way to go.  it seemed he wanted the repair to heal before pushing rom - I had complete rupture of medial retinaculum and significant tear in vmo that was repaired.  now i wonder if i should have had a cpm...
I am doing strengthening exercises and improving strength, so i wonder if this is a mistake, and how to judge that my progress is so slow that it indicates profusion of scar tissue...

Offline roandbob

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Re: Arthrofibrosis Success Story
« Reply #11 on: August 04, 2004, 02:09:04 AM »
Dear Laurie and Heather,
thank you for posting your rehab. protocols.  I'm also suffering from arthrofibrosis after an auto-patellar reconstruction of my acl in december 2003. Its been fustrating that no one realized that I was suffering from arthrofibrosis until April.  My OS hadn't seen a case like mine in 15 years and was stumped.  Before that, everyone thought I wasn't working hard enough in PT.  The forced flexion on my stomach was the worst.  They put so much pressure that I was screaming and finally stopped when they tore my hamstring.  X-rays taken over a three month period indicate that I have patella infera.  It's not too bad, only 1/2 inch.  I've been to two other specialists who recommend  that the first thing to do was a lysis of adhesions, lateral release and MUA.  Well, I had that done a week ago (too bad they couldn't fix my hamstring though).   After reading earlier stories on this board,  I insisted that I have a CPM machine also and an ice unit (which I didn't hqve after the first surgery).  They gave me one.  Today, I gave my PT a rough outline of what I'd learned reading your posts.  He agrees with following your advice.   My OS told me to be full weight bearing and didn't give me any idea of a rehab protocol.  My knee still swells up rapidly, but now I have an idea of what to do.  If this doesn't work, I'll be knocking on Dr. Steadman's door also.  The one thing that I was disappointed about was that all the doctors agreed that the patella infera was irreversible and would cause permanent damage to my knee cap.  I wish we had picked up on the scar tissue earlier.   Any way,  thank you for posting your rehab. protocals.  You've probably saved me from continued problems with scar tissue.  I really hope this is the end of it.

Rose

Offline Heather M.

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Re: Arthrofibrosis Success Story
« Reply #12 on: August 04, 2004, 03:59:27 AM »
Rose,

My heart breaks reading your posts.  I was in exactly your position, only my OS had 20+ years of experience...and was still stumped.

One thing to really keep an eye on is the swelling.  Dr. Steadman is insistent that this is the mother of scar tissue in arthrofibrosis patients.  If you can isolate what causes your swelling, I really urge you to do so.  Then you can talk to your PT and OS about cutting that thing out.  I know in my case, because my patellar tendon was debrided extensively in an effort to eliminate the patella baja/infera, that any weight-bearing caused a bad flare of swelling and pain.  It was over 5 weeks before I could weight bear in a significant way, and I really limited this to the amount of walking it took to get to PT and maybe go grocery shopping.  So maybe you can see if the weight-bearing is what's causing your swelling and talk to your OS about modifying it?  Hopefully, since he's not experienced with arthrofibrosis, he will be willing to learn...?  Maybe he can call Vail and get the post-op protocol from either Dr. S or from the Howard Head Sports Medicine Foundation?

Good luck with your struggle.  Feel free to speak up and be an advocate for yourself--you are the only one who really has something riding on the outcome of this procedure.

Heather
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
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Offline jennifer123

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Re: Arthrofibrosis Success Story
« Reply #13 on: August 04, 2004, 04:08:06 AM »
Hi Laurie and Heather,

I have a question about the non-irritation comments.

I've been in Vail since May and had 2 surgeries for arthrofibrosis.  Dr. S seems to think I'll come out okay, but I'm still not convinced as I have very similar problems to before the surgeries.

My question is what is considered irritation and how much is allowed.  That is, I've been on crutches consistently since May and pretty much on and off for 1.5 years.  Whenever I "touch down" my patella tendon registers about a 6-7 on the pain scale.  This has not changed since my two surgeries in Colorado.  Did you have and allow for this type of irritation in your rehab?  Did you have this irritation?  (Even if I don't "touch down" I'm still in about a 4-5 in pain just from swinging in my leg in a bent position.)

I think I'm doing much much better since going to Dr. S.  For one thing, I can bend my knee without using my hands and straighten it a lot easier (still need to use my hands at times).  And, I can get out of pain by just sitting down (before Dr. S. I was in 24/7 pain).  Anyways, I'm really curious what type of irritation you did allow your knee to experience and if you had any irritation that you could not avoid.

Thanks,
Jennifer
« Last Edit: August 04, 2004, 04:08:44 AM by jennifer123 »
8 surgeries:
2/03 ACL left knee
5/03 LR right knee
6/03,1/04 scar tissue removal left knee
5/04, 6/04 adhesion removal, anterior interval release;  8/04 MUA, insufflation, injection; 8/1/08 ACL left knee (again) + LOA

Offline Heather M.

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Re: Arthrofibrosis Success Story
« Reply #14 on: August 04, 2004, 04:18:09 AM »
Jennifer,

Dr. S. said he expected me to have sharp pain in the patellar tendon region for 10-12 weeks after my surgery, because he was so aggressive in debriding the tendon.  So I would think that would be at least a number to go by--3 months from your most recent surgery.  I don't think I can stress enough how very limited I was for several months post-op.  I couldn't take care of myself because being on my feet for any period of time caused the knee to balloon.  When I talked to Dr. S. about it, he said he understood that there were simply things I could not get out of doing.  Some of them might irritate the knee.  So my job was to cut down on the 'discretionary' activities to compensate for the amount of time I had no choice but to be on my feet.  That meant social life reduced to nothing, no malls, no traveling unless I used crutches and wheelchair, trying to get others to do grocery shopping, hiring a cleaning service and pool guy, etc.  Everything I could do in order to reduce irritation was something I just had to do, no matter how much I hated it.  Like I hated having to pay someone to clean my house--I'm a clean freak, and they never did as good a job as I would have...and they cost a LOT of money.  But I had to do it, because cleaning really flared my knee.

Anyway, I'm pretty sure I know the pain you're describing...the railroad spike being driven into the bone below your knee.  Mine is worse with weight-bearing, but still hurts even when I sit.  A real breakthrough for me was taping with Kinesio Tek tape (blue, waterproof, extremely flexible).  I can't stress enough how great it was to use this--I taped in a V shape lifting my kneecap up into place.  It was amazing the relief this provided.  Another thing you might ask Dr. S. about is Lidoderm Patches.  Since the area where you are having pain is very focused, it might help a lot to slap a lidocaine patch on it.  Try it and see.  Acupuncture can also be helpful.  And has the PT done phonophoresis on you?  This is ultrasound with cortisone cream--I absolutely loved it.  6+ hours of divine relief each time.

Hang in there.  I know you can't eliminate everything that causes this sharp pain.  But you can cut it down to the bare minimum and give your knee a chance to recover from the trauma of surgery.  I really did have increased pain levels for about 4-5 months after my surgery.  Then things started to get on a more even keel...until the dog got me.  Since then, it's unfortunately been a nightmare.

And I won't even talk about the new spot of calcification on my tendon that the massage therapist found--I just about stood up on the table and kicked him.  The pain was brutal, I couldn't hold still.  The tendon responds to irritation by forming calcium deposits...not good.  Not good at all.  Dr. S. will not be pleased....

Heather
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
http://www.flickr.com/photos/hmaxwell















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