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Offline rjs1956

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Bob's Arthrofibrosis story
« on: March 02, 2007, 02:01:04 AM »
I will start from the beginning.  When I was 14 years old in 9th grade gym class I injured my knee bracing for a football snap and impending collision with the guy on the other side.  I really don’t know what happened to my knee since I did not go to the doctor.  It may have been a kneecap dislocation.  It hurt a lot and I collapsed on the ground clutching it.  I was able to get up and walk it off but my knee felt “weak” from that day onward.  I could feel the weakness while sitting and trying to raise my leg from 90 degrees to straight.  I was unable to raise the injured leg for a several months but I kept trying.  There was also a “floating object” in there that would occasionally show itself while I was walking by preventing me from fully extending my knee to the locked position.  When that would happen I would sit on the ground, extend my leg as far as it would go and relax until I could wiggle my kneecap.  I could feel the floating object at the bottom of my kneecap near the shin and with my fingers slowly manipulate it up the inside side of my knee along the kneecap edge.  When it got to the top of my knee it would just disappear and my knee flexed normally again.  If anyone was walking with me they would wince and shake there heads.  That occurred a few times per week for about two years and then it stopped.  I assumed whatever the thing was it got wrapped up by scar tissue or my body dissolved it away.  Since then I have led a fairly active life riding bikes, step aerobics, tennis, walking.  My left knee has always been a bit more troublesome but nothing more serious than occasional swelling in the back of the knee.

Fast forward to Jan 1 2007.  While watching TV the room was a bit chilly so I curled my left knee up under me on the sofa.  I sat that way with full flex compressing my kneecap to my lateral femoral condyle for about an hour.  It didn’t hurt at all.  I typically sit that way but never for that long.  The next morning my left knee felt stiff when I woke up.  I attributed it to the sitting.  As I took my morning shower it got stiffer and stiffer.  By the time I was finished eating breakfast it was so swollen that I could not move it at all and it eas extremely tender and painful.  My wife borrowed some crutches from a neighbor and after taking about 20 minutes to get in the car I went to work.  I only worked until a little after lunch and then I decided to go home.  I made an appointment to see an orthopedic doctor the next day.  At home that evening while sitting on the couch I tried to move my knee and I moved too fast and it bent producing a pain that made me howl and nearly pass out.  I leaned back on the couch and fell asleep for about 20 minutes.  When I awoke my knee felt a lot better.  I figured it was still swollen and that the incredible pain I felt earlier made all other pain appear to be zero by comparison.  I felt my knee and the swelling had gone away.  I could bend it and move it with no pain so I got up and walked around.  Whew, what a relief.  I figured the worst was over.  The next day it felt a little stiff but by the time I got to work and was at my desk for awhile it had swelled up again and I could not move it or walk.  That evening I went to the orthopedic appointment and the doctor tried to aspirate the knee but it was filled with blood.  He told me to give it a week to see if it would drain again.  It didn’t. A week later he ordered an MRI but said he could not get me in to see the surgeon for a week and a half since he was on vacation.

An orthopedic nurse friend of ours recommended her practice so we made an appointment with their best guy who is the official orthopedic doctor for one of Atlanta’s major sports teams.  He was able to get us into surgery in a week and a half.  So I had surgery on January 18th.  All of the blood was flushed out and he found two quarter-sized bone bruises on my patella and lateral femoral condyle, no meniscus tears or ligament damage (the good news).  The doctor said it took a very long time to get the bleeding to stop.  The technicians who prepped my knee I was told were totally amazed at how messed up it looked once they got the camera inside.  They said “he has worn is bones down to the blood level – this guy is screwed.”.  The osteoarthritis is level IV.

After the surgery my knee was predictably swollen and remained so for three more weeks.  At that point I began to try and bend my knee but it would not bend more than a few degrees.  I chalked that up to the remaining inflammation.  I was patient enough to wait until the swelling went all the way down and then my knee would just bend.  At the first post-op one week after surgery the doctor told me to try and get the knee to bend.  I kept trying but no progress.  At the 4-week post op he asked me to bend it and I said “are you kidding?”.  He said no.  When he saw that I could not bend it he became a little impatient and told me I was way behind schedule and that I should have at least 90 degrees flexion by now.   He said to take pain killers and bend it.  He would give me four more weeks to get it to 90 or he would do a manipulation under anesthesia (MUA) to which he added “you don’t want that”.  I felt the fear of God.

That is when I really got into PT full force and researching on kneeguru.  My PT guy is great and knows about and understands arthrofibrosis and thought I most likely had it.  I learned about the difference between MUA and LOA (lysis of adhesions) and it seemed the LOA was the more elegant solution.   I found the list of the top surgeons who do LOA’s and I settled on Dr. Folk at the Steadman-Hawkings clinic in Greenville South Carolina.  It is only 140 mile drive. I saw Dr. Folk on Feb 28th and March 1.  He said my knee is still smoldering from the initial injury and surgery.  My MRI indicated a lot of scar tissue warranting an LOA procedure sometime in the near future.  He gave me a steroid shot (triamcinolone) to help put out the remaining embers.  I have my next appointment on March 20, 2007.
« Last Edit: March 05, 2007, 02:40:23 PM by rjs1956 »
1970 patella dislocation
1/1/07 stage 4 petallfemoral osteoarthritis bone-on-bone
1/1/07 petallfemoral bone bruises "kissing lesions" quarter-sized
1/2/07 bruises bleeding into knee cavity, swollen, immobile
1/18/07 surgery to remove blood, swollen immobile, fibrosis starts
4/9/07 LOA Dr Folk

Offline Jaci

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Re: Bob's Arthrofibrosis story
« Reply #1 on: March 02, 2007, 11:15:40 PM »
Hello Bob,

Thanks for sharing your story with us. I'm really sorry your having difficulty with your knee.

I was treated by Dr. Folk when he was at SH in Colorado. He's a great OS and a very compassionate person as well. I was really impressed by him. I think you're in good hands with him.

Keep us posted on your up coming surgery.

Best wishes,

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 rjs1956

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Re: Bob's Arthrofibrosis story
« Reply #2 on: March 05, 2007, 02:39:36 PM »
He is very nice and very intellectual.  He listened carefully to my story and then modified his initiali diagnosis.  He reminds me of the characters on the CSI shows who analyze the evidence to arrive at the conclusion.
1970 patella dislocation
1/1/07 stage 4 petallfemoral osteoarthritis bone-on-bone
1/1/07 petallfemoral bone bruises "kissing lesions" quarter-sized
1/2/07 bruises bleeding into knee cavity, swollen, immobile
1/18/07 surgery to remove blood, swollen immobile, fibrosis starts
4/9/07 LOA Dr Folk

Offline Nick_Knack

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Re: Bob's Arthrofibrosis story
« Reply #3 on: March 05, 2007, 08:16:51 PM »
just finding a doctor who lets you complete a sentence is a relief.....


good job finding someone who seems to know what he is doing.


best of luck,


nick
Age: 35
1989 rt ACL (+25 degrees ext loss)
1994 rt ACL resection (+ 10 deg)
2001 rt ACL revision (+ 10 deg)
2003 rt med meniscus repair (+10 deg)
2004 rt LOA and post capsulotmy (zero degrees)
2005 rt LOA and tib bone plug removal (even w/ other leg)
2006 rt Fulkerson TTT & ACI Carticel

Offline willp

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Re: Bob's Arthrofibrosis story
« Reply #4 on: March 05, 2007, 09:53:47 PM »
It sounds like you've done your research and  - just as important - are prepared to challenge OS's if they propose solutions that you're unsure about.

I've had no contact with the SH clinic in the Carolinas, but I had LOA surgery at SH in Vail and have nothing but good things to say about them.

The best of luck....

Will
Medial plica removal 4/12/06. Not referred to PT. Increasing pain and quad weakness. Diagnosed with scar tissue by Dr Steadman 10/12/06, LOA and AIR in Vail 12/15/06. Returned to high level activities 4 14 years.
2020 - flare up with medial joint line pain and occasional collapse. Currently baffled

Offline rjs1956

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Re: Bob's Arthrofibrosis story
« Reply #5 on: March 05, 2007, 11:03:21 PM »
The clinic is integrated in the Greenville hospital complex - 5 campuses spread around the Greenville area.   The PT area is right there also integrated with the clinic and the therapists have a lot of knowledge and experience dealing with AF.  It is a complete package.  I am researching extended stay facilites and there are at least two within 3 miles of the clinic.
1970 patella dislocation
1/1/07 stage 4 petallfemoral osteoarthritis bone-on-bone
1/1/07 petallfemoral bone bruises "kissing lesions" quarter-sized
1/2/07 bruises bleeding into knee cavity, swollen, immobile
1/18/07 surgery to remove blood, swollen immobile, fibrosis starts
4/9/07 LOA Dr Folk

Offline pappy6

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Re: Bob's Arthrofibrosis story
« Reply #6 on: March 06, 2007, 03:25:50 PM »
Been reading all the horror stories... and I have to add another...
I had TKR in Aug.2004. My OS had me on a CPM immediately and in-home CPM along with Therapy 3x week. I got great extension, but could not get the flex required. After extensive PT, I acheived my 90 dgree and my insurance lapsed. My PT arranged an extended program with me which I did, but never got more than 90 degree flex.
After numerous OS follow-up visits.. I got very discouraged with my OS when all he could offer was making me feel it was my fault for not doing the required PT at home and he did everthing perfectly.
It is now 2 1/2 yrs later and my flex is less than 90 and now find more stiffness and the night tingles and discomfort I experienced before my TKR.
I was told it was the scar tissue from my PT and it was something that a major stumble or trama to the knee might break up. Otherwise my flex will be and has been limited.
I have stepped upy own therapy on my tradmill to keep the joint moving and try to reduce the stiffness and occassional locking i have recently experienced also.
Has anyone else experienced this and has the surgery to relieve this condition been successful?
   

Offline rjs1956

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Re: Bob's Arthrofibrosis story
« Reply #7 on: March 06, 2007, 06:49:34 PM »
See post http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=33166.0 which is very long and is directly on your topic.
1970 patella dislocation
1/1/07 stage 4 petallfemoral osteoarthritis bone-on-bone
1/1/07 petallfemoral bone bruises "kissing lesions" quarter-sized
1/2/07 bruises bleeding into knee cavity, swollen, immobile
1/18/07 surgery to remove blood, swollen immobile, fibrosis starts
4/9/07 LOA Dr Folk

Offline Janet

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Re: Bob's Arthrofibrosis story
« Reply #8 on: March 07, 2007, 03:05:53 PM »
Pappt:

I had my TKR in November 2006. At the four week mark I could hardly bend my knee and was in too much pain all the time. My OS, Dr. Blaha, immediately sent me to a pain management doctor who got my pain under control through the wonderful world of pharmaceuticals! Then I had a MUA the next week. My PM doctor put in a peripheral nerve catheter which deadened the leg and stopped the pain for three days post-MUA. I stayed in the CPM as many hours as I possibly could. The next morning after the MUA I could bend to 90 easily, and now I can get to 105-110 cold. BUT....I think the thing to see here is that the MUA was done very quickly after the TKR. This long after your TKR, I would not allow a MUA. The scar tissue is too mature and the MUA may damage something else in your knee that gives easier than the scar tissue....like a bone. At this point, it seems that you would need surgery to remove the scar tissue. You need to be seeing a surgeon who deals with complicated cases following TKR. Good luck.

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 pappy6

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Re: Bob's Arthrofibrosis story
« Reply #9 on: March 11, 2007, 02:58:08 PM »
Thank you to all the replies. At any rate, i am not in a great situation. I have learned to adjust my lifestyle to live with it, even though it seems to be getting to a point of allowing even less mobility as time passes. I would like to totally ignore the Dr's and surgeons completely. Is there any history of what could eventually happen if I take NO action.

Offline rjs1956

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Re: Bob's Arthrofibrosis story
« Reply #10 on: March 21, 2007, 04:37:55 PM »
Update 3/21/2007 I saw Dr. Folk yesterday and he was "amazed" at how much my knee has improved.  Of course "improved" is relative; my flexion is as limited as ever but my knee is a lot more pliable.  The petella can be moved around a lot more and the tissues above and below the knee are a lot softer.  There is also a lot less heat and the swelling is down.  We scheduled an LOA (lysis of adhesions) operation for Monday April 9th 2007.  I will be staying in a brand new extended stay facility (Value Place) for 4-8 weeks post-op for the physical therapy.  Fortunatly I am a computer programmer so with my laptop I can continue to work.  I will continue to do the PT routine 3 times per day between now and April 9th to get the leg muscles as strong as I can.  My extension feels like it is almost at zero as I can stand balanced on just my bad leg and I feel like my leg muscles are relaxed.  Wearing the DynaSplint all night long every night along with the PT routine 3 times per day must be helping that.
« Last Edit: April 05, 2007, 05:02:20 PM by rjs1956 »
1970 patella dislocation
1/1/07 stage 4 petallfemoral osteoarthritis bone-on-bone
1/1/07 petallfemoral bone bruises "kissing lesions" quarter-sized
1/2/07 bruises bleeding into knee cavity, swollen, immobile
1/18/07 surgery to remove blood, swollen immobile, fibrosis starts
4/9/07 LOA Dr Folk

Offline rjs1956

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Re: Bob's Arthrofibrosis story
« Reply #11 on: April 10, 2007, 12:44:21 AM »
   Update April 9 2007 - I had my LOA today performed by Dr.Folk.  The surgery was relatively short - 35 minutes.  Dr. Folk told my wife that the scar tissue was not as widespread as he thought it was going to be and what he found came out easily.  I received general anesthesia as well as a femoral block which was a shot in the groin that numbed the front of my leg but not the back or foot.  The femoral block leaves my leg numb to the touch similar to a shot at the dentist and should last 18-24 hours.  Dr. Folk tolld me just before the surgery he would use only two keyholes on either side of the knee rather than the two below one above as I had on my last surgery.  My knee is wrapped with a "Polar Care" ice-water cuff.  I am in the CPM machine set at 30-70 and I am supposed to increase it 5 degrees per day until it is at 0-90.  I am to be on the macine at least 8 hours per day.  While there is a slight discomfort when I first got in it after a short while it starts to feel good.  Also it is nice to see my knee bend for the first time in three months.  My first PT session is 8:30 tomorrow morning. 
« Last Edit: April 10, 2007, 01:00:54 AM by rjs1956 »
1970 patella dislocation
1/1/07 stage 4 petallfemoral osteoarthritis bone-on-bone
1/1/07 petallfemoral bone bruises "kissing lesions" quarter-sized
1/2/07 bruises bleeding into knee cavity, swollen, immobile
1/18/07 surgery to remove blood, swollen immobile, fibrosis starts
4/9/07 LOA Dr Folk

Offline rjs1956

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Re: Bob's Arthrofibrosis story
« Reply #12 on: April 11, 2007, 02:48:13 AM »
Update April 10, 2007.  First PT session today doing the same routine I've been doing since my visit March 1st.  The femoral block has almost totally worn off and now I feel pain under my patella when my flex approaches 60 degrees.  The quad muscle tendons above the patella are also starting to feel sore when I massage them.  I said in yesterday's post that the scar tissue was not as widspread - that was my assumption due to the short time in surgery.  When I spoke to Dr. Folk today during PT he said my knee was totally packed with scar tissue.  He removed tissue above my knee first then below my knee.  With each release my knee bent more and more on its own.  He said he was able to get my heel to touch my butt which is full flexion.  I'm sure if I were awake the pain would have been unbearable.  I am spending as much time as I can in the CPM trying to push the flexion and doing the PT routine.  I am disappointed at the pain at 60 degrees but I was only at about 20 degrees a few days ago.  I was told it is OK to put weight on my leg and I walked without the crutches (which I had been doing for two weeks prior to surgery) at the end of PT.  But as the femoral block wears off it is sore and the crutches feel safer.
1970 patella dislocation
1/1/07 stage 4 petallfemoral osteoarthritis bone-on-bone
1/1/07 petallfemoral bone bruises "kissing lesions" quarter-sized
1/2/07 bruises bleeding into knee cavity, swollen, immobile
1/18/07 surgery to remove blood, swollen immobile, fibrosis starts
4/9/07 LOA Dr Folk

Offline Jaci

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Re: Bob's Arthrofibrosis story
« Reply #13 on: April 11, 2007, 03:57:05 AM »
Hello, Bob,

That's good news that Dr. F was able to get full flexion. As you probably figured out, now the hard work begins. Adequate post-op pain control is extremely important after LOA for both gaining ROM and getting the quads firing. What pain meds are you taking? Are you taking them on a schedule-- setting a timer and taking them at the exact prescribed interval? If you're doing that and find that the meds are not effective, please ask for something else. It's one of the most important aspects of your rehab.

If you feel safer with crutches, definitely stick with them. Just try to move in as normal a manner as possible so you mainatain proper body mechanics. It takes a bit of focus and you end up moving pretty slowly, but it's easier to maintain mechanics than it is to correct them if you adopt compensatory posture and so forth.

Wishing you a smooth recovery,

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 rjs1956

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Re: Bob's Arthrofibrosis story
« Reply #14 on: April 11, 2007, 03:16:14 PM »
I am taking hydrocodone 2 tabs every 4 to 6 hours.  I don't have any pain until my knee flexes and then the pain starts under the kneecap when I reach 55 degrees.  What I have found with the pain meds is they do a good job of masking background achiness but any sharper pain still cuts through.  The femoral block, on the other hand, blocked pretty much everything.  The tens unit is supposed to block pain.  The theory of it was explained to me but I have not found it to be effective at all but I plan to test it a bit more today by placing the electrodes closer to my knee.

So I can walk, slowly, without crutches, and do my PT routine all pain free except for the wall slides which involve flexion.  I was encouraged to walk to help get the swelling down.  If I am feeling weak I use the crutches.  I woke up at 5:45 this morning and I was anxious to do the PT and my energy level and confidence was high so I walked a good bit around the room and it felt good.

The interesting thing is the pain level does not change much as the flexion increases.  Right now I am on the CPM machine set to go from 40 -> 70.  the pain starts at 55 degrees but at 70 is only a little bit more.  I would have thought that the pain level would be proportionate to the flexion.  So I am bumping up the flexion on the CPM a degree at a time to see how far it can go before I can't stand it.

As far as the quads firing I can twitch them at will and do straght leg raises in every direction.  I had some trouble with the front leg raises in the first PT session but I got them going after a few minutes.  I find doing somthing with my good leg to get the kinesthetic feel helps me to duplicate the control for the bad leg.  Also the femoral block was getting in the way yesterday and it is all worn off today.

Dr. Folk also told me another thing that intrigued him was how fast my blood congealed.  He said when he was removing the scar tissue at the top of my knee there would be a little bleedling and he would switch tools by pulling one out of the keyhole and inserting the other tool.  In those few seconds my blood had already congealed whereas in most folks the blood would still be liquid.  He said he was going to ask a blood specialist if there was any coorelation between fibrosis and fast congealing blood.
« Last Edit: April 11, 2007, 03:39:55 PM by rjs1956 »
1970 patella dislocation
1/1/07 stage 4 petallfemoral osteoarthritis bone-on-bone
1/1/07 petallfemoral bone bruises "kissing lesions" quarter-sized
1/2/07 bruises bleeding into knee cavity, swollen, immobile
1/18/07 surgery to remove blood, swollen immobile, fibrosis starts
4/9/07 LOA Dr Folk