23 year old male Case Study

[bodybuilder32]

Hello everyone,

I want to write about my story and hopefully you experienced posters will be kind enough to help me out. 

I also want to thank everyone involved in this forum for continuing the knowledge of arthrofibrosis.  I would be completely and utterly lost without it. 

My story:

On Sep. 24th 2011, I tore my ACL and MCL playing football.  It was very traumatizing and I believe this incident caused the arthrofibrosis from the get go since I was unable to bend or straigten my knee at all after 2 weeks.  I was maybe at 45 degress flexion tops. 

My OS made a huge error by allowing me to do surgery just 2 1/2 WEEKS after the injury!!!  I had no mobibility whatsoever, and he only causually mentioned I may be a little stiff coming out of surgery.  Not only this, but we did a patellar graft to compound the problem of having a super stiff patellar.   
     
Post surgery I was in an adjustable brace for 2 weeks with no PT.  After two weeks post surgery I did PT which worked to no avail. I was stuck at 45 degrees and extension was probably 10 degrees. 

I knew I was stiff so about 5 ˝ weeks post surgery, and 2 months from the intitial tear I did an LOA surgery and an MUA.  Afterwards, my physical therapy protocol was hyper aggressive so I could maintain all of the flexion gains I made from the manipulation.  I was at 90 degrees post LOA surgery. 

As I soon found out, my pushing it was causing the scar tissue to form at a rapid rate. It is only then, after this 2nd surgery where I knew something was seriously wrong with me.  I reseached it and found that I have arthrofibrosis. 

It is has been 9 weeks since the initial injury.  I have have had an ACL/MCL surgery, and then an LOA/MUA during this nine week time frame. 

I have scheduled to see Dr. Noyes in cinci (thank you forum members for mention his name). 

I will see him in the second seek of Dec. 

Currently I have completely backed off aggressive PT and spend all day at work sitting with an elevated leg.  My PT included patellar massage, ice packs, leg elevation, and some ankle pumps, while doing minimal walking with crutches. 

My flexion is currently around 70 degrees, but that was with a raisd hip.  Its prolly more like 55 or 60 degress. Extension is probably around 15. 

My question is: How should I be rehabbing now? I basically screwed up my chance to make gains by aggressively pushing flexion post surgery.  I am one week post LOA surgery, and am only now starting to back off and elevate/ice/take ibuprofen/ massage the patellar. 

I see Noyes in a few weeks. Does anyone know what he will recommend for me? 

Thank you

[missmyknee]

Hi Bodybuilder

You will be in excellent hands with Dr Noyes. I am a patient of his too. I can't tell you what he will do for sure,that will be established when he sees you, but I can say they will want to get the inflammation calmed down probably thru prescription anti-inflammatories, medrol dose paks and/or cortisone shots. His PT dept in his office is top notch. Tim is the head PT. They are all trained in rehabbing arthrofibrosis. You should expect to stay in Cincinnati for many weeks to be treated properly.

What you can do now, since you are 1 week post-op, is to keep it elevated and iced. This helps control inflammation. Do patella mobes several times a day making sure you move the patella in each direction. Do quad sets and straight leg raises 2-3 times/day. You can do passive flexion by either doing wall slides or sitting at edge of table crossing good leg over bad leg at ankle and gently pull leg backwards till you start to feel a stretch and discomfort, not pain. Hold for 5-10secs then slowly release/repeat. You can also use a rolling stool to gently bend the knee, hold and release. For extension you can lay on stomach on bed a let leg hang over end and let gravity pull on extension. Dr Noyes has his patients do hanging weights. This is done by placing your ankle 4 inches high on a foam block or rolled towel then placing 10lb ankle weight  to start (sometimes going up to 25lbs ) draped over the thigh just above the knee for 10 min. He has this done 6 times day. This provides a frequent gradual stretch to tight tissues. Also do ankle pumps and hamstring stretches. Dr Noyes also likes to use e-stim for quad contraction and swelling. Rehab for arthrofibrosis is a slow process where gentle PT is done to keep inflammation down . They always told me to exercise in a pain free zone. If there is any increase in pain or swelling, then back down til it resolves.

Here is a link to AF rehab from Dirk Kokmeyer

http://www.kneeguru.co.uk/KNEEnotes/node/263

This gives you an idea of rehab for arthrofibrosis at Dr Noyes clinic

http://www.kneeguru.co.uk/KNEEnotes/node/2066      and this

http://www.kneeguru.co.uk/KNEEnotes/node/2064

I don't know if you saw Dr Noyes tutorial on arthrofibrosis. Here is the link

http://www.kneeguru.co.uk/KNEEnotes/node/633

Let us know how it goes

Pam

[bodybuilder32]

Thanks for the response Pam. I am resigned to the fact that this will be a long recovery and may never go away....

Is it ok if I ask you a few questions about your knee?

1) How much improvement have you made since you first knew you had arthrofibrosis? 


2) On a day to day level, are there ever fluctuations in how much you can ext./flex your knee?  Meaning, on some days do you wake up and have around 110 degree flexion, while on other days you wake up and have maybe 85 or 80? 

3) Also, not to seem like I'm giving up on my recovery by any means, but are there people out there that have been able to claim government disabilty for this kind of injury?

4) How exactly do you perform a patellar mobe? Is it just finding tight spots in the knee cap and moving it back and forth with youyr fingers.  I have been doing these, but am not sure if I am missing something.

5) How beneficial has CPM been for you?

6) How long should I be on crutches to avoid overloading my patella? Do you use crutches every day to avoid over inflamation?

7) How have people in your social life reacted to you when you told them about arthrofibrosis?

Thank you so much for all of your help on this forum.  It has been very beneficial for newbies like me who  have to do all of their own research for this injury because no OS or therapist understands it. 

[WAD]

I tore my MPFL, lost a chunk of kneecap cartilage, and my femur was badly bruised mid October 2010 playing basketball. I was 24. I had surgery 1 week after injury. I too wish I would have waited. I did not even start PT or BEND my leg at all until week 5 post-op.

I saw Noyes for the first time in February, 4 months post op. He could tell I was in bad shape and could not bend beyond ~93 with lacking 5-8 degrees of extension.

I had surgery with him in March and then again in June.

The biggest thing I recommend is gently massaging your knee cap 10 times a day as soon as you can post op, attend physical therapy as prescribed, do not push yourself to do heavier weights - focus on your flexion/extension and knee cap mobility. Use the ERMI Noyes will get you religiously - I took mine to work and used it 8 times a day for at least a month after surgery.

Even with the ERMI, DO NOT PUSH YOURSELF INTO PAIN!!! Be gentle and feel a "stretch" with slight discomfort.. NO PAIN.

1) How much improvement have you made since you first knew you had arthrofibrosis?

I was locked at just over 90 flexion and not full extension. I now hyperextend a little and can touch my foot to my butt. My kneecap is still swollen. I have permanent cartilage damage (arthritis) and pain. I cannot run yet. I do go to the gym 3 times a week and barbell squat (even with my bad knee). I feel myself improving weekly.

2) On a day to day level, are there ever fluctuations in how much you can ext./flex your knee?  Meaning, on some days do you wake up and have around 110 degree flexion, while on other days you wake up and have maybe 85 or 80?

Every day was different at first and still continues to be. It depends how much I'm on my feet how far back I can get my leg at any given point. At first, I could see myself being 10-15 degrees varying each day.

3) Also, not to seem like I'm giving up on my recovery by any means, but are there people out there that have been able to claim government disabilty for this kind of injury?

I bet you could be. Maybe.

4) How exactly do you perform a patellar mobe? Is it just finding tight spots in the knee cap and moving it back and forth with youyr fingers.  I have been doing these, but am not sure if I am missing something.

I have 4 angles that I wiggle it back and forth. I do side to side, 45 degree angle 1 way, 45 degree angle the other, and then up and down. Sit flat on the ground and roll a towel up under your knee to give it slight elevation. I do like a saw back and forth, but also hold it to one side for 10 second holds, especially closer to post-op.

http://www.youtube.com/watch?v=byRmuxXcJU8

http://www.youtube.com/watch?v=EvFSv6c5xnA

5) How beneficial has CPM been for you?

My first surgeon ordered me a CPM 5 weeks post op. It was somewhat helpful but ultimately did not get me where I needed to be.

Dr. Noyes does not use CPMs. You should keep your leg elevated, straight and regularly ICED post op.

I've used this with pillows to keep my leg up and straight. Please do not forget to ice!
 http://www.amazon.com/gp/product/B000OCF9P0/ref=oh_o03_s00_i00_details

6) How long should I be on crutches to avoid overloading my patella? Do you use crutches every day to avoid over inflamation?
Use crutches for a month or more at least!
You will probably be walking with both feet and the crutches after a week or so if your other injuries are healed. I used 2 crutches to walk around and then down to 1 crutch for probably the first 2-3 months.

7) How have people in your social life reacted to you when you told them about arthrofibrosis?

Holy *!@!. Good luck.
Actually, I met my current girlfriend after my initial injury and we're still going strong over a year later


Good luck man. Also check out the supplements thread on this forum for some helpful information.

Consider getting the iceman that Dr. Noyes uses. But be sure to get ice packs for the back of your knee because that thing only covers the front.

[bodybuilder32]

Thank you for your detailed response.  Gave me some hope  , although it sux you had to do another surgery after the first.

I'll be living in Cinci for 6 weeks to do rehab every day.  Did you stay for 6 weeks?   

I worked with Tim Heckmann for a day to learn P.T exercises.  He was top notch. 

One thing about "pushing it too hard". Does this apply for extension as well?  Tim had me sit with my leg strait with a 20 lb weight bad over my knee for 10 minutes.  The pain is pretty excruciating for the last 5 minutes, but it works great for getting my extension down. 

He recommends doing this 4-6 times a day to force the body to adapt to the stimulus.  Is the fact that its really, really, really hard (albeit not impossible, but damn I wanna scream when Im doing it)  too much strain? 

How does flexion come back?  Is it just the lack of scar tissue allows your body to gain a lil more at a time.  Was the EMRI the best thing for flexion?

[missmyknee]

Tim is great ! Hanging weights is brutal but effective. Dr Noyes has been doing this for at least as long as I have been seeing him. (since 2004) I did hanging weights for 6 weeks and used the ermi for 6 mos. Hanging weights and ermi  work because it causes a gradual, frequent, and consistent stretch to tight tissues. I always hated when the weights were removed. Tried to push down so as not to get the rebound pain. They also like using estim  to help get the quads contracting and for swelling , also using ultra sound 5-10 min before doing patella mobes and soft tissue massage to break up scar tissue. The ultra sound helps to gently heat tissues to make them more pliable for stretching and breaking up.

The ERMI is the best thing for flexion, but you still need to do other methods such as wall slides, sitting on a table crossing good leg over bad and slowly pulling the bad leg backwards. when you feel a good stretch, hold for 10 secs then slowly release. You can use a rolling stool too. Also you can do a figure 4 . this is another passive stretch for flexion( also good for mcl sprains) looping a strap around the ankle of the bad leg, cross bad leg over good leg at ankle and pull strap causing bad leg to slide up the good leg to look like the number 4

Dr Noyes used to have CPM used by his patients, but changed to no CPM in 2007 0r 2008. My last 2 surgeries , in this time frame, did not have a CPM. In his tutorial, it says he prefers his patients to do their own over pressure where they can be in control of how much to do, instead of  using a CPM.

You have to be patient and persistent with his rehab program. Patient compliance is a must.The good thing about staying there for 6 weeks is PT twice a day and if any problems develope , they are quickly taken care of either by  Dr Noyes or Tim.

Pam

[WAD]

I was a fortunate soul who did not require much post-op weight hanging while in extension. I still had my leg propped up and would even request weight be added to increase my chances of maintaining the extension long term. Noyes's team really does not want you to be past 0 degrees extension, but my good leg has 8 degrees of hyper extension and I really wanted more than 0 with my bad leg.

I hung weight as part of my rehab for probably 6 weeks in addition to and always propping my leg straight when icing or just lounging around.

When you are making your accommodations be sure to ask about long term stay rate and/or medical rate. I know that once I stayed a week at the Red Roof Inn, my rate retroactively lowered to like $33 a night! Couldn't beat it with parking right outside my door.

[Rennschnecke]

Flexion can be regained by stretching tissue and doing this during the early days of recovery is successful because the scar tissue is more pliable.  The ideal is to have no scar tissue, but realistically this is unlikely if you've had surgery.

However, all tissue can breakdown and is remodelled, including scar tissue.  As a result, I have continued working my flexion and continued to improve my ROM even more than 3 months post-op.  My work was based on stretching exercises I used to do before injury which entailed holding for at least 30s to 60s.

However, the key factor is to ensure that you don't overdo it to such an extent you set off a chronic pain reaction and get swelling.  The other thing is to ensure you don't overdo it so much that you can't do things daily.  It's a grind, but getting full mobility back for your daily activities has got to be better than one day in three

You do have to be very, very patient.  I began to work towards full ROM at around 4 months post-op.  I would say that I now have it and it is relatively stable at 15 months post-op.  By stable, I mean I can have around a 2 week rest and regain it relatively easily after 3 days' stretching.

It was only at a round 1 year post-op that I began to feel that I was ready for strengthening.  This was simply because I was automatically drifting into the strengthening range on the static bike.  Some people have progressed more quickly so don't worry.

[bodybuilder32]

What are your opinions about how long to stay in Cincinnatti?  I havent scheduled my extended stay yet.  I was recommended by Noyes to stay for 6 weeks.  I want to, and am willing to, but I want to make sure I will be making solid gains in progress during that time. 

If I'm not going to be making anything significant, is it really worth staying those additional weeks?  I plan to stay atleast 4, because, from what I understand, Noyes will do a gentle MUA at around the 3 week area if you are not making good progress.

I would love to hear some of your experiences about progress in the first 1-6 weeks.  I wish I could be in Cinci for as long as it takes, but obviously that is not possible.   

I'm just trying to be smart with my money, because these costs add up to be quite a lot. 

What would you guys recommend? 

[missmyknee]

If Dr Noyes says 6 weeks is needed then that would be the optimal time. You won't be able to say how well you will do until you do the time and are commited to the rehab program. You can't predict the future. To ask for others experiences will not predict your outcome. Everytime I've had surgery, my post op period has been different.

It does cost a lot to go where the expertise is located. It's an investment to give your knee the best possible outcome, but not always 100% guaranteed. Those of us with AF have invested a lot of money to be treated by an AF expert.

Pam

[captainruss]

Bodybuilder,

You are early in the process so you are very treatable.  If you can afford/get the time off for Cincinnati, do as long as you possibly can with Dr. Noyes.  i am going up in June to see him while taking my daughter to see a Patella-femoral specialist. 

I am not sure if the ERMI is the same thing as a flexinator?  The Flexinator is a chair you sit in, you can hydraulically pressure your leg into more and more flexion.  I have also used a dyansplint (dynasplint.com).  This is a spring loaded device that keeps a low load, constant pressure stretch on your leg.  It keeps a flexion or extension pressure depending on what model you get.  I wear mine in bed at night in place of the CPM.

A CPM did not work for me because my AF was so extensive that it could not bend my leg past 45 degrees.  The velcro would pop or it would slide away from me.  Laying in bed with your leg on the wall is another way to do a low load stretch on your knee.  I actually put an ice pack on my leg while doing that.

You defintely want to discuss a Polar ice cooler and/or a cryocuff with Dr. Noyes.  The Polar cooler is a cooler with a pump. I fill it with ice and water and it pumps ice cold water thru hoses to a pad on my knee.  It is the best form of ice I have found.  I get large Jell ice packs from my PT therapist for $20 each.  They are reusable and I keep 3 for my knee and 3 for my shoulder and use them to rotate.

Make sure you speak with Dr. Noyes about HO (Heterotropic Ossification)  I have had bone growing in my knee (in the scar tissue) since last September.  The HO is taking over spaces filled by the AF.  My understanding is a simple anti infllammatory like Indemotrocin (not sure of spelling) would have prevented the complication of HO.  The only treatment for HO for me now is to wait up to 2 years for it to stop growing, have it revised (cut out) and treated with radiation to keep it from coming back. The complication for the radiation is possible cancer.

Disability.....I know you are young, but please consider getting 30 year term life insurance.  I am unable to get life insurance now and if you go on diability...your options or prices for term life insurance go up.  The furture Mrs. Body Builder and little body builder ankle biters will need to be protected in case of something tragic.  Just a tip.

Disability.....you can get a doctor to say your are disabled.  I have seen people disabled for very minor things.  It takes normally up to two years.  After your life insurance, go online and fill it out yourself.  You will be denied.  You then have 60 days to appeal which you can follow the instructions are email me and I will help you anytime.  After the second denial, you need to request a hearing in front of a magistrate.  You can get an attorney for that, but the doctor will be the key.

I did not see anyone suggesting ASTYM.com.  I would suggest you talk to Dr. Noyes, but do ASTYM prior if he agrees or after depending on what he tells you.  It is a form of PT that helps reduce scar tissue.

You will see a thread on here about "Vampire Pain at night".  I put a very long post on this thread just today.  I detail every form of medication I am currently taking, why, and how to get it.  The list is long.  You should google the "Intractable Pain Patients Guide" from the Internet.  I believe it was from Dr. Forest.  Read it, print it, and take it with you when you need to request pain medication.  I can help you about every form of pain med on the planet pretty much....medication during and after surgery.  I posted it on the vampire thread.

AF has differing levels of complication.  I am in that less than 1 percent category.  If you are treated early (which you are) and actually go to a knowledgeable OS (Dr. Noyes) you will have a great chance of getting better.  I believe just the fact that you are seeing Dr. Noyes this early on gives you a great chance.  You should get your surgical reports from the hospital and your OS.  I believe Pam will help you with how to do this.  Your standard of care was terrible and you may have options.

My problem was the three (3) OS and three (3) infectious disease doctors that cared for me kept diagnosing me with infection, not AF.  They removed my TKR multiple times and really screwed up my immunity with long term anti-biotics. 

You have more flexion that I have had in the whole process.  Your extension is almost as good as mine.  You have a good chance of recovery.

I also was sent to aggressive PT the day after I was released from the hospital.  I went with the staples in my leg and my PT therapist practically stood on my leg.  I screamed quite a bit.  I could feel the scar tissue tearing..but it grew back each day.  I went thru a massive amount of pain for nothing.  I did not understand what was needed until I found this forum.  My six doctors still don't have a clue.

The sad part is I was functioning before my first TKR two years ago.  I am now a physical wreck.

Be very aware of atrophy of your muscles from being non weight bearing.  My back and shoulders have been surgically repaired many times.  My leg is causing my back and shoulders extreme pain.  My right hip is so painful I can no longer lay on my right side.  This is from my gait due to the TKR's.  My lower back is killing me because I drag my leg.  My shoulders from two years of a walker.....and lifting my fat but on and off the bed...tub.

Deep tissue massage...on your entire body, but especially on my knee was very beneficial to the scar tissue.  Of the two hours or more in PT I spent five days a week, the only thing that helped my scar tissue was the deep tissue massage on my knee.  I am currently trying accupuncture and it is working....better each time.  The massage helped blood flow and scar tissue break up in my knee.

If you are feeling down....make sure you get medication.  My OS told me he cries like a baby if he doesn't take an anti-depressant.  Make sure you get testosterone to combat the loss from pain meds and loss of blood.  Get vitamin supplements.  I use lidocane patches and Flector patches also.  I won't repeat it all but that thread will go into detail.

Please know that you have people here who will help you any way possible. 

If you have any other questions, let me know.

Russ

[captainruss]

Check out the thread "Good news......ASTYM" by starpolisher.  She is very knowledgeable about this subject.

Pam is very very up on the AF.