multiple scar tissue surgeries

[QBknee]

Jennifer/Janet  - thanks for your updates.  I see you are both hanging in there and doing the best you can under the circumstances. 

Thought I would give an update as well.

It has been a while since I have posted anything.  My last procedure was a wash-out scope on March 14 for a staph infection.  I was doing great from my procedure Feb. 2 until the infection kicked in.  The infection certainly brought back scar tissue beneath and probably attached to the patella which unfortunately was not removed during the wash out scope.  My local OS was just concerned with ridding the infection and did not do any shaving of scar tissue. 

I am back to normal daily activities and only do PT 1x week now. I actually travel quite a bit for work so lots of walking through airports, long car rides which are tough on the knee.  I also coach football and have been doing a lot of standing for long periods of time.   All in all the knee is handling this pretty well.  I ice alot, hopefully not too much thus causing more heat in the knee as Heather has mentioned.

My PT consists of lots massage to quads, patella mobs, light bending, stretching and pressure push down for extension.  My flexion is 120 at end of PT session and extension is still off considerably.  My good leg hyperextends to -10 and my bad leg is + 3 or4 degrees.  Without any warmup and massage, my flexion is about 108-110 (not very good).   I stil have  patella baja although not in too much pain from it.   The knee is extremely hard in the patella tendon area.  I have some degree of patella mobility, certainly not much up and down and little more side to side.   

I am not in too much pain.  The infection seems to be under control.  I still have some heat in the knee, and will trying a medrol does pack starting this Thursday to try and calm the knee down and see if it provides any more relief.   I have alot of crunchiness, snapping and popping as well.   

I have been told to try and avoid cycling due to patella and trochlea damage in my knee.  I have swam a couple of times using flippers and this seemed to have irritated the knee a little.   My gait is improved but lack of extension still bothers me when walking.  My quad has increased in size the since the end of March which is a good thing.  I do have a pretty constant/dull lower back/hip pain, probably an offshoot from the knee.  I need to continue to stretch and get more massage for this area. 

I will be seeking further opinions later in the year and see where I stand going into 2006.  I know there is alot of scar tissue still in the knee and the baja issue to deal with. 

Dan

[Jaci]

Hi Jennifer,

I've had swelling after steroid injections. Like your swelling, it didn't show up until a day or so after the injection, and it went all the way to my toes. I remembering reading or hearing somewhere that swelling can occur in the first 24 to 48 hours (sorry I don't remember the source of info). Maybe the injection combined with the stress of flying is causing your knee to swell and get hot. I thinking icing, elevating, and taking it easy are a good idea. Just be careful not to over ice-- No more than 20 minutes every hour.

Hope this is just a temporary thing.

Take care,

Jaci

[azgirl]

hi there jennifer,

sounds like your atleast still going forward in your progess. this knee stuff gets tiring doesn't it?  i just got back from vail on friday.  saw dr. S for my 6 wk. post op. he said my knee was doing great and to go back in 3 months to see if we need to do surgery. My ROM is 0 to 125-135, i can get 140 after stretching on a good day.  i still have the stiffness and pain, my scar tissue was back within 2 weeks after surgery, as usual.
i get frustrated and down cuz i want it to be normal NOW!!!!!! oh well, my PT tells me how much better it is and so does Dr. S, so i have to believe them and keep going....

have fun in vail...   keep up the possitive attitude, one day it will be all better   the picture was cool. seems like everyone in the picture has had forward progress with the knee. (i think)
take care and i will catch you later. Have a good trip.

Chemaine

[Jaci]

Hey, Jennifer.

I see Dr. S on the 16th. I'm pretty much in the same place as you. My knee sucks. I'm sick of it. Too much pain. Too little function. I want it to stop. 

Hang in there.

Jaci

[Janet]

Jennifer:

I know what you mean about how hard it is to express how something feels. I never think I can put into words everything I want the OS to know. There are so many "weird" things, and I don't know which are significant and which aren't. I understand how frustrating it is!

I sure hope this injection does the trick and the tightness starts to release.

Janet

[Heather M.]

Jennifer,

I know it's hard to answer that 'main complaint' question, but it is worth trying to find a way!  Last time, I finally leveled with Dr. S. and stopped answering with qualifications.  He used to ask, "Where is the worst pain."  And I'd do this big, long explanation of tightness and traction pain here, burning pain there, deep throbbing ache, etc.  It took about five minutes to answer the question.  Last time I saw him, in April (my pre-op appt., but I had no idea then if he would do surgery and what he would do), I just tried to keep it as simple as possible.  I tried to prioritize everything, and when he asked me where the worst pain was, I just pointed to the spot that was most impacting me on a daily basis--right where the ITB attaches below the knee.  He took that as his marching orders, and by God, that pain is gone!  I'm so happy with that aspect of my surgical outcome.  Don't get me wrong, I still have plenty of problems.  But I just decided that we couldn't address it all at once, because the different pains had come on incrementally, over time.  So we tackled the worst of it, and that is now gone.  At my last post-op appointment (10 weeks), we took on the next challenge, which was the sharp patellar tendon pain on weight-bearing.  And that is coming around really well with my new brace--though of course I realize that the knee brace would do nothing if I hadn't had the scar tissue removed as a starting point.

Anyway, I know it's hard, but try to prioritize.  A pain diary or daily note taking might help you pinpoint the worst offenders.  Some things are very upsetting to me. but if looked at objectively, I realize they probably don't impact me much.  For example, I get these moments where my kneecap catches/locks and then...breaks free, for lack of a better term, with the loudest, nastiest popping noise you've ever heard.  Those moments are very upsetting to me, because they are an audible reminder that the back of my kneecap looks like the surface of the moon--giant cartilage craters!  But objectively, these moments only happen once or twice a day, and the pain is pretty short-lived.  I think the swelling and wooden feeling in my whole joint that develops after I've been on my feet cooking for 15 minutes is a problem that has a much bigger impact on my daily life.  So that's what we'll talk about next visit.

Hang in there.  Are you any better or worse than when we saw you in April?  Because I was really impressed with the functional exercises you were able to do!  It was very inspiring for me, at least, to watch you do free squats in the PT clinic!

Heather

[hottubpam]

Oh Jennifer I am sooooo sorry.  How does he (or you) measure a "huge step backwards"?  Do you mean in terms of ROM or something else?

We just have to keep on hoping.....

Twice during my latest op, I heard the familiar saying - 2 steps forward, 1 step back, I call it the arthrofibrosis waltz.   

Hang in there.

Pam

[Janet]

Jennifer:

How frustrating! But at least they think you can still make improvements without surgery. That's a positive. Keep up the hard work and try not to get too frustrated.

Janet

[missmyknee]

Hi Jennifer

It's nice to hear from you again, but wish it was purely to report how well you were doing. It sounds like you did have a period where you had some return to normal life. I'm so sorry your knee has decided it's time to get intensely inflamed. You are a veteran to arthrofibrosis and know all the tricks. The only thing I can add is taking anti-inflammatories either OTC or calling Dr S for prescription anti-inflammatories or getting a script for a medrol dose pak . I've been taking high dose Celebrex and been thru 2 medrol dose paks since my surgery in April. A medrol does pak might nip it in the bud. Other than icing, resting, maybe using crutches for awhile, that's all I can offer.

Things have changed on the website. Take a look at the new Community Hub the KNEEguru launched this year. There is a special section on arthrofibrosis. I can't remember if you were still posting when Dr Noyes wrote his 6 part tutorial on arthrofibrosis. Here is a link. Have a look all around. There is even a place to blog.

http://www.kneeguru.co.uk/KNEEnotes/node/632

It is nice to hear from you. Many times I wondered how you were doing    I'm sure some of the other oldies will say Hi

I hope you get things under control and it doesn't go full blown AF episode.

I'm still battling it . I will hit my 8 yr mark in August.

Pam

[Janet]

Jennifer:

Sorry it came to more surgery for you, but at least it sounds like he may have found the root of the problem in that knee. Tell the other one to quit vying for attention LOL! Really, good luck to you during rehab. Keep us posted.

Janet

[missmyknee]

Hi Jennifer

Good luck on your recovery. You are an AF veteran so you know going easy on PT and patella mobes is key. You might ask about a prescription anti-inflammatory. I've been on Celebrex since I woke up from surgery and alternated weeks by taking 2 pills a day with 1 pill a day. Icing and elevation most of the time with the polar care helps. Hopefully PT will give you more info when you see them. You can always call up to Vail and talk to a PT you've used there.

Good Luck 

Pam

[Potosi]

I have noticed that there are many people posting here who are experiencing difficulties with arthrofibrosis, scar tissue and motion problems, as well as problems with bad advice on rehab from their therapists and doctors. There are undoubtabany lurkers as I was before signing up and posting, experiencing this too.

Laurie does a superb job of addressing these issues in this post, and in fact, in all her posts. Everyone should read this, save it and read it again and again . It will save you. Laurie,s posts and Jakems have been instrumental in helping me navigate and understand the recovery and rehab process. They are must reads.

I hope my drawing attention to these old threads helps.

Jaci, is this what bump means@

........

[Potosi]

Jennifer,

I'm sorry things are not going the way you want them to.

I reviewed everything and I have some opinions. 
They are probably NOT what you want to hear though and I'm sure I'll get yelled at.
But I really want you to succeed.

Dr. S can cut everything out.  But it is up to YOU to keep the scar tissue from returning. 

In my opinion your body produces scar tissue very fast.  As fast as mine does. You did too much too fast.  I know you listened to the PT people, but I think you did too much too fast.  PT people are not always the best to listen too.  Listen to your own body.

5/17/03: you had the scar tissue cut out.  You  had no clunking, good ROM 152, swelling was probably due to surgery.
They had you riding the bike with 0 resistance. Patella mobs, leg lifts, wall slides

5/25/03: you got a cortisone shot because of swelling and redness and pain.  You started having problems with patella mobs
and wall slides.

5/29/03:  your clunking returned.
5/30/03:  pain returned.

So withing 2 weeks your scar tissue was returning.  So did mine regardless of what anybody else says.  It does grow back that fast.

OK, ask yourself what you were doing during those 2 weeks for the scar tissue to return.  You need to scrutinize everything.
A.  I would not have been on the bike so soon. 
B.  CPM and icing?
C.  Were you still on crutches?
D.  Where you doing too much too soon?  Standing, sitting in a chair, not elivating?
E.  Was your leg elivated when not doing PT.  I mean was it above your heart?

I am serious here.  If you are not doing PT. Then you need to be laying down with your leg elivated, icing and CPM'ing. 
For some reason I don't think that happened.  You were in Vail by yourself, taking care of yourself.  That requires you to stand.
The mere fact that you were alone implies that you did too much.

Do NOTHING until ALL the swelling, heat and ROM are back.  When I say nothing I mean nothing.  You should be laying on your back with your leg elivated and having people wait on you. 

I think you failed within the first couple weeks.  I think it returned that fast.
Yes I also think you have very little muscle at this point.  This complicates things, but swelling, redness are not a product of weakness, they are a product of too much strain.

6/6/04:  Cortisone shot by Dr. S

6/13/04:  Brace from Dr. S,  things are bad

Somewhere in here you rented space from some guy.  You called it the 60 stair place.  Stairs?  NO, no stairs.  stairs are not in the reciepe for success.  stairs are in the receipe for failure.

6/18/04:  Another surgery.  Not successful.  Still clunking, pain,etc...

8/18/04:  Dr. S says "I just don't know how to stop it from coming back."
He does an insulffation and MUA.

NOTE:  That's because HE doesn't stop it from coming back, YOU do.  You do this by doing NOTHING TO IRRITATE THE KNEE. 
Don't do anything that causes swelling and pain.  No standing, no sitting, no bike, no stairs, etc....  The only thing you get to
do is lay down and elivate the knee.

8/26/04  knee is bad again, synvisc injection.

8/27/04:  allergic to synvisc.  knee swells

9/11/04:  pilates, crutches, pain, swelling and clunking.

10/11/04:  back in california

12//3/04:  Dr. S says OK to some strength training.  PT tells you to bike with LOTS of resistance, Leg Press, treadmill, Step ups and Double leg squats.

12/8/04:  you say leg is swelling and gets hot.

12/9/04  you state that you have been ring the bike and doing leg press for 2 months  ( that translates to October some time)

Why are you strength training if you have heat and pain?  I don't care what the PT person told you.  Follow the reciepe for success.
Do nothing to irritate the knee until all swelling, heat pain are gone and ROM is back.

You said:
"3. Very tight and painful patella tendon.
4. Knee is super stiff and does not move without a lot of deliberate concentration.
5. Can't hold my knee up and bent at the same time.  (maybe a strength issue?)
6. Knee still gets super hot in the patella tendon region a couple times a day.
.......
The other curious thing is that I'm using more weights at the gym then comparable women. "

If you have swelling and heat then why are you lifting weights?

I would try the surgery again.  I would have Dr. S cut it out.  Bring somebody with you that can take care of you.
All you are to do is lay down, elivate, ice, cpm, patellar mobs and ROM work.  No bike, no leg lifts, no standing, no sitting in a chair.
Do all of this until all swelling, heat and pain are gone.

He can cut it out, but it's up to you to get it to stop reforming.

Look back at where YOU think things went wrong. 

Don't give up.  Don't ever give up.  You're young and it's your life.
I'm sorry if this post comes off harsh, but I really think you can beat this and I want you to look at everything and make the necessary adjustments and try again. 

Laurie

[missmyknee]

Hi Potosi

Jennifer deleted her posts. Her last surgery, to which I was commenting, took place at the Hawkins clinic in South Carolina, if I remember correctly. She hasn't posted since, but according to her profile, she did visit the site today. Maybe she will post an update.

Laurie and Jaken did a great job. EDd put all the rehabs from AF members in one post, Compilation of AF rehab. This is located in the Hub under AF/Great Threads of Arthrofibrosis section.

Hope you are doing well

Pam

[prech]

Just came upon this thread and Laurie's excellent post -- informative, decisive, even a bit scary, but straight-forward and not confrontational.  Just wanted to express my gratitude at posts and threads like this