scar tissue and lots of pain

[azgirl]

I have had surgery 3 times on left knee. ACL replacement, bucket tear meniscus repair and then scar tissue removal and manipulation 2 times.  Last one was Nov. 16, 2003. Degree of motion is 3 to 130.  I still have intense pain and Dr. or Physical Therapist not sure what to do anymore. My PT is a scar tissue specialist and is very frustrated with my knee, wants to make it better  .  Does anyone have the same problem or any ideas to help the pain  

[Holly]

Dear Azgirl:

You have really good ROM, so what kind of pain do you have?  When do you have it?  During what kind of motion/activity?  What are you doing for the pain at this time in terms of meds/icing/PT routine, etc.?  Are you wearing any kind of support/unloading brace?

If you give us some idea of what exactly is going on with your pain, perhaps we can help.  Hope we can!

Holly

[azgirl]

hi holly,

i had and acl reconstruction and a bucket tear meniscus repair. the last manipulation/scar tissue removal was on nov. 16,2003.  i gained 20 degrees after each surgery. i was put on the cmp machine right after surgery and stayed on it for 2 wks 24/7 except to go to PT.  I did PT everyday for 3 wks, then 3 days a wk for 3 months. Now i go once a wk.

The pain is 24/7 with sharp pain when i bend too much or try running, jumping, or anything that puts pressure on it.  as for meds, i am on Naproxyn, Oxyconton, Neuronten, and Percacet. have not had a full nights sleep since march of 2003.  i have 2 types of braces, one for heavy use of knee and one for everyday, like work or shopping. Anytime i will be walking alot.  i use ice and heat per my therapist.  ice for swelling and heat to keep circulation good.
any thoughts from anyone would be awesome.  don't want to keep taking so many pain killers.
chemaine

[Mark524]

Hi azgirl,
It looks like you have serious pain problems.   I also have limited motion in my knee - like 0 - 130  but I am pain free on the knee because I reject surgery and focus seriously on exercise.   I think what you need to do is do some personal tests to see what works for you.  Because for me  I do what works nows.   Going for surgery is not recommended  unless when you have some injury that needs to be fixed.  
1. First of all  see if you can stop  taking those medications frequently.  That is, see if there is  a big differene   wtih "taking the pills" and "not taking the pills"
If there is no big difference then you should greatly limit the taking of the pills  to rear occasions when you are in a lot omoref pain
Then
2.  Try to be serious with increasing  your range of motion.  That is  do the exercise seriously  atleast every 2 days  and see if the pain reduces.  ( You will leave out taking medications during the few days that you are serious with the Physiotherapy-  This is so you know what treatment is working.

I feel the P T exercise alone will greatly reduce you pain.  I know this from experience.   Because  I also have a hip   that is  limited in range of motion.   Infact thats why I have not completed my knee range recovery-  because the hip is more important than the knee.
So  I used to have  a lot of pain in my hip until I began to do some serious range of motion recovery.  I used to take pain pills  at least  2 times everyday.  But since that seriousness.  I take the pills only once or twice every 4 days.  (Only when needed)
So do these two tests and see which one works.  But when the PT exercise starts working, do not allow another surgery-  I know more than 1 person who have about 7 surgeries in the joint and it only left then worse.  The doctors can mess up your joint with surgery and it is so easy for them to offer it.

and also  I was wondering what is the best method to increase the range of motion for the knee- is there a helpful machine or something.  I have been so busy with my hip that I have have much time to invest in my knee
I will check for your reply later

best regard
Mark
Website Marketer and Google high Ranking
http://www.servertron.com

[Holly]

Dear Chermaine:

There must be something wrong besides what you were operated on for, because OXYCONTIN and PERCOCET are awfully strong medications for the relatively minor surgeries you've had.  I don't mean to sound harsh, but I had a double osteotomy (they broke my tibia - put in 2  3" screws, and took a wedge out of my femur - put in 5  3" screws and a 5 1/2" L-shaped plate) 4 months ago and I stopped needing pain medication on a regular basis after about 1 1/2 months!  I'm not saying you're not in pain.  I'm saying that the amount of pain you're suffering from that you need such MAJOR pain medications must be coming from somewhere other than a repaired meniscus, ACL replacement and MUA. (By the way, I also had one of those with lysis of adhesions and some hardware removal 3 weeks ago).

Maybe Mark's right, that it has something to do with being on the medication non-stop, or trying to determine how PT affects your level of pain?  It sounds to me like your PT program was really good, but again, something sounds seriously wrong!  Have you considered going to a Pain Management specialist to see if they can find a solution to your situation?  It's horrible to think that your pain is so great that you haven't had a proper night's sleep in more than ONE YEAR!  YIKES!!!  I'd probably be killing people by now (O.K., just kidding...sort of! )  See if your GP or your OS can refer you to someone.  They must wonder what they're doing wrong that you're hurting so!?!

You'll be in my thoughts, kiddo.  I hope things get better for you!

Hugs!

Holly

[BBall12]

I had acl recon 7 months ago and a week and a half ago i had scar tissue removal.  How quick did your scar tissue come back after you had it removed???  Mine knee is showing my signs again that the crap maybe comming back!!  Im real frustrated as well. Im currious to know how quick yours came back though after removal.

[Heather M.]

I'm going to be the voice of dissent here.  I agree that PT is crucial, but forcing the knee to bend through pain, then not addressing the natural pain that you feel afterwards, is a recipe for having your quads shut down.  The next step after that is patella baja and severe quad atrophy.  And this is to say nothing of the constant pain affecting your mental and physical health.  

Everyone feels pain in different ways and to different degrees.  Two people can have the same surgery and one takes advil while the other weeps with pain even after taking percocet.  The medical understanding of the mechanics of pain is in its infancy.  But to suggest that someone is having pain because they are taking pain medication is kind of silly.  There is obviously a mechanical problem going on in the knee, otherwise the doctor would not have done several procedures and Chemaine would not still be in PT.  ACL reconstruction, especially if done with a patellar tendon graft, can lead to arthrofibrosis and patella baja.  This means bone on bone contact and presto!  Instant arthritis.  This hurts.  When a person in their 60's has this condition, they get a knee replacement.  When a young person has it, they get PT and pain medication and surgery to attempt to fix things.

Chemaine--the level of pain you have and the lack of full extension would seem to suggest patella baja and probably scar tissue wrapped around the patellar tendon and behind the kneecap.  Or an ACL graft that is too tight.  Both cause almost identical symptoms, and both are incredibly painful.  Another possibility is nerve entrapment in scar tissue, something which causes the nerve to fire these excruciating pain messages constantly.  If it continues, the muscles around the knee can begin to shut down, because it is when the muscles contract as when you are bending that the scar tissue is pulled tight.  If there is a nerve entrapped in the scar tissue, it gets tugged, pulled, strangled, and abused during this bending and straightening of your knee.

I take it from your name that you are in AZ?  Phoenix?  I just moved to Sedona from there.  I've got bad news, though...while there are any number of excellent orthopedic surgeons in Phoenix, there are none who specialize in treating scar tissue.  I've seen at least one doctor (sometimes 2) from every major practice in town, including the Mayo clinic.  No one was willing or able to help me.  The last doctor told me "I wouldn't touch your knee with a ten foot pole!"  Nice, eh?

I had to travel out of state to see a surgeon who was able to restore my knee to complete flexion and extension.  I had to stay there and do specialized PT for a month--should have stayed longer--and I still have serious knee problems.  But scar tissue is not one of them anymore.  I am still struggling with all the mechanical changes that the scar tissue left behind, through almost 15 months of inappropriate treatments, repeated surgeries, and aggressive PT in PHX.  I was told repeatedly to just work through the pain, and not given any medication to take afterward except for Celebrex.  That was the worst time in my life.  Pushing through didn't work for me.  It may not work for you if you are still struggling after one year--I mean, you've obviously been doing PT this whole time, right?  When exactly is pushing through the pain supposed to start working...?

[Heather M.]

If you want to contact me by private message I'd be glad to tell you who I've seen in AZ and what I've done.  Take care, and don't let any doctors tell you that the pain is in your head or that you're having 'more pain than you should.'  I heard that repeatedly, and it wasn't true.  As my last surgeon told me when I woke up in the recovery room, "your pain is all in your knee."  He was appalled that I was walking around without crutches--and more importantly doing aggressive PT--on a knee that was so encased in scar tissue.  He felt that the aggressive weight-bearing PT contributed to the chronic over-production of scar tissue in my knee over time.  I seem to have a genetic condition that leads my immune system to go into overdrive and produce way too much scar tissue.  It is rare, but not unheard of.  What a relief it was to see someone who dealt with scar tissue all the time and knew how to at least get rid of that aspect of my knee troubles.  And I likely wouldn't have any further knee problems if I'd seen this doctor a lot earlier.

Some people are able to work through scar tissue and adhesion problems with PT.  It's been my unscientific study that these people generally don't have a genetic problem with scar tissue production.  Instead, their arthrofibrosis tends to be from being immobilized after a traumatic injury and/or invasive surgical procedure.  Mine came after a 'simple arthroscopy' where I started PT immediately and had full range of motion within a week.  PT is great for many things, and is crucial in arthrofibrosis cases.  It should always be the first step before surgery of any kind.  But in some cases the knee simply isn't going to feel better until the adhesions are surgically removed.  I've found that when someone describes a lack of  extension, that tends to be the type of person who will not be able to rehab successfully with PT alone.  That's because nothing your PT does will take the adhesions out from the space under your kneecap and behind your patellar tendon.  If you've been doing PT faithfully and religiously and just aren't making any progress after eight MONTHS, then it's pretty obvious to me that PT isn't the only solution.  This is just my opinion, but since your PT and OS are 'not sure what to do anymore' in your words, it also seems obvious to me that they also believe you need something else but they don't know what.

You may want to go to the soft tissue healing problems section and read through Jennifer123's long surgery thread.  It sounds pretty much like an identical situation to what you are going through.

Heather  

PS Are you in a formal pain management program?  If not, I know a good doctor in Scottsdale who, through me, has extensive experience with scar tissue patients

[Heather M.]

I had acl recon 7 months ago and a week and a half ago i had scar tissue removal.  How quick did your scar tissue come back after you had it removed???  Mine knee is showing my signs again that the crap maybe comming back!!  Im real frustrated as well. Im currious to know how quick yours came back though after removal.

Hi there--sorry to hear that you are still struggling.  Arthrofibrosis is such an insidious thing...you think you're getting better, then you have a setback.  It is so frustrating to rehab this condition, because all of the standard knee post-op protocols can actually make certain patients worse.  No one knows why, but it is documented that people who have recurring arthrofibrosis can begin to reform the adhesions as soon as a week post-op.  I had serious ones that were felt in the base of my quads two days after my last knee surgery--and this was done with a scar tissue specialist and a very specific knee protocol.  At 2.5 weeks post-op, I had another small procedure that ruptured the scar tissue in the base of my quads--the doctor described hearing the pops in the OR and couldn't believe I had so much scar tissue just 2.5 weeks after having my knee completely cleaned out.  I do have a bit of scar tissue now in the area, but it doesn't get in my way.  Besides, to expect to heal without any scar tissue is unrealistic--that's the way our bodies repair themselves.  The important thing is to keep the scar tissue production to a minimum, and then to keep that scar tissue as supple and flexible as possible through a lifetime of physical therapy and stretching.  I'm not joking.  If I don't do my home exercises for a few days, I will feel everything in the knee joint tighten up.   That's what Mark is talking about when he stresses the importance of the PT work.  If you have full range of motion or close to it, and are able to keep the knee flexible by staying with your PT program, there is no reason to think that the scar tissue that's in your knee will be a problem down the road.  But it may be something you battle for a long time.

What symptoms are you having that make you worried the scar tissue is coming back?  Have you updated your post-op thread?  I don't remember seeing it.  Please let us know what's going on--maybe someone can make you feel better because they had a similar situation and were able to keep improving through PT?  You're still very early in the post-op period, so I wouldn't worry too much about more surgery or anything right now.  Stay with your PT and keep up the communication with your doctor--didn't you say he/she was very good?  I hope that your OS is able to reassure you that what you are experiencing is normal or to be expected.  Keep us posted.

Heather

[Mark524]

Heather,

I did not say that pain medication is causing the pain.  She had said that she is taking  a lot of pain medication and still in a lot of pain.  So I just wanted her to do some test to see if the pain medication are helping much.   Because if she is still in  a lot of pain then maybe in her case pain medication is making no diference.  If thats the case then she should greatly reduce the dose becasue those athritis pain medications are all hard on the kidneys.
Also  I really don't mean  a dangerous force when I say  that she should do some serious PI on her  own.  I mean that she  should gradually apply  enough pressure to see some range increase.  Not in one day  but little by little each day.   I just think she should overcome some pain to gain some range  in her  effort to see if that will belp.. After all she said she is in pain all the time

M, C. E

[Heather M.]

Her last surgery was Nov. 2003.  It is now the end of July 2004.  She had two surgeries prior to Nov. 2003.  Do you think she hasn't tried working on bending the knee before now?  If bending the knee and doing PT were going to reduce her pain, I'm guessing it would have happened sometime in the last 8 months of work. To tell someone with scar tissue that they need to work on gently bending their knee completely overlooks the obvious.  Of course she's trying to bend her knee.  In fact, since she has flexion of 130 degrees, I imagine she's doing it every day.  That flexion is considered fully functional, so it doesn't sound like range of motion is her main complaint.

And stopping pain medication without medical supervision is dangerous.  You can become very ill.  I agree, if the pain meds aren't doing much, then this should be discussed honestly with the prescribing doctor.  He/she may decided that they should be cycled back--but only on the advice of a doctor and under the doctor's supervision.  And just because she still has pain, it doesn't mean the meds aren't working.  My pain levels hover around a 5-6 every day, with occasional spikes of much worse pain. I take medication for this.  I do not think the meds are doing nothing, I think they are bringing the pain down to a more bearable range on a daily basis.  I remember when I wasn't taking anything but toxic levels of advil for my scar tissue pain, and as bad as my knee gets these days, it is better than before.

I just think it's dangerous to throw around medical advice like telling someone to "push through the pain and bend," and to "stop taking pain meds and see what happens."  It sounds like Chemaine is on a formal pain management program, taking oxycontin on a scheduled basis every day.  That is the way this drug is prescribed.  This is a completely different mindset and method of managing pain than taking meds every couple of days, only when the pain gets very bad.  Telling someone to stop doing this is telling them to go against established medication regimens, and should not be done unless you are a licensed physician entrusted with this person's care.

Narcotic pain medications are NOT hard on the kidneys unless they contain tylenol--and oxycontin does not.  Percocet (oxycodone + acetominophen) does but it is a low dose, and if she is taking oxycodone IR there is none at all.  Drugs like Celebrex and Vioxx and other NSAIDs can be tough on the kidneys, liver, and digestive tract of sensitive individuals, which is why anyone who takes them should be monitored--I have blood tests every six months.  It's important to have the correct information out there.

I don't mean to rant, but it burns me up when I see people being given advice to go against their doctor's instructions, stop taking pain meds, push through the pain, etc.  I'm really glad that PT alone has helped you decrease your pain levels.  It did not help me, it made my pain worse.  I don't think my story is unusual, and what I'm hearing from Chemaine is that she gets a lot of pain despite PT with a therapist who has a lot of experience with scar tissue.  When dealing with arthrofibrosis, it is very common to 'hit a wall' in therapy.  When that happens, you have to sit down with the doctor and PT and make a plan that everyone can live with.  

I guess my point is that recommending more PT and telling someone to push harder implies that they are not trying hard enough right now.  That is not what someone dealing with arthrofibrosis needs to hear.'

Heather

[Heather M.]

Chemaine,

You asked if there are things that can help with the pain of arthrofibrosis, and I think there are quite a few of them.  Maybe you are already using some, so forgive me if this list gets repetitious for you.

Appropriate PT - this is the single most important thing.  You are lucky your PT has experience with this condition--Not every therapist out there knows how to deal with scar tissue.  I only found two of the six I worked with knew how to push my knee and help me build some strength without irritating the knee.  In my case at least, it's important not to irritate or inflame the knee because that can start the whole scar tissue cascade all over again.  Unfortunately, you don't need to have surgery to trigger the formation of adhesions.  In certain people with a tendency to form scar tissue, all that is required is repetitive movement, strength training, or other activities that make the knee heat up and get red & puffy.  Once that happens, the body sends the inflammatory enzymes that form the response to trauma.  My doctor says that swelling and heat are the mother of scar tissue, so his PT protocol focuses on doing nothing that irritates the knee.  That means a long delay sometimes before the patient begins strength training--one person on this board had to wait 7 months!!

Other PT modalities that I found very helpful for my pain and scar tissue were:  ultrasound, TENS (I have a home unit), tissue work (cross friction, myo-fascial release), Jobst treatment for swelling, iontophoresis, phonophoresis (ultrasound with cortisone gel--it feels heavenly!), and extensive stretching.  I have a lot of scarring at the distal IT band, where it attaches below the knee.  So having the PT do stretches on my IT band can bring such relief--the Ober test an Thomas test used as stretches are the best for me.  There might be others that work better for you, so be sure to ask your PT about adding new stretches to address your worst areas of tightness.  The other critical thing the PT does is patellar mobilizations; but you also need to do these at home during the day.  This can come under the category of tissue work.

Outside of PT, I had a lot of relief from seeing a Rolfer--specialist massage therapist who does soft tissue work and structural realignment.  It is one of the most helpful things I've done, and through this I have been able to keep my full range of motion (hyperextension of a couple degress and touching my heel to my butt).

My pain management doctor does acupuncture, which I find is very helpful for rampant knee swelling.  It also helps with the fascial restrictions that I have in my thigh, hip, and lower back.  I developed back trouble as a result of walking funny, so acupuncture really came in handy.

Home-based pain relieving modalities:  Lidoderm patches work great for me.  I also love my home TENS unit and use it every day.  I have a Breg Polar Care Cryo-cuff, which is an ice machine like the ones used in the hospital.  You fill it with ice, then wrap the connected velcro knee pad around your joint, and you're good for 8 hours of icing relief.  I love my Breg.

Taping - Kinesio Tex tape has worked the best for me.  By using this, we were able to determine that my ongoing problems were indeed mechanical==bone on bone==and not from the scar tissue per se.  My kneecap rides very low because of the scar tissue in the past, and the tape helps me push it back up into place.

Other things that helped me get rid of the worst of my aching pain involved giving up certain PT and exercise activities that made my pain much worse.  These included water therapy--which I loved!  But my knee blew up like you wouldn't believe after each session, and would ache for 2-3 days after only 15 minutes of light exercise in the pool.  It had to go.  Other things I've had to give up other people have found incredibly helpful:  aquatherapy, eliptical trainer, retro-treadmill, recumbent bike, mini squats (30 degrees or less) or assisted squats using the theraball, active extension work (straightening my leg from 90 degrees bent to full extension, with or without weights).  I had to give up doing side leg raises with weights because this inflamed my hip and low back and set off a flare of sciatica that I never want to repeat!  It was truly awful.  And one of the main causes was doing 200+ side leg raises a day with 4 pound ankle weights.  Ouch.  I also stopped doing the extreme flexion exercises.  I used to sit back on my heels and use my body weight to fully bend my knee.  But that put a lot of stress on the damaged back of my patella, so I had to stop.  

Anyway, these are just some of ideas of things that you can try to see if they help your pain.  What works for me might not work for someone else, and vice versa.  I know a lot of the exercises I've had to give up are just fine for others on this bulletin board.  Hang in there, and talk to your OS and PT about maybe trying things that sound like they might be helpful.

Take care,

Heather

[Mark524]

Heather,
Obvously you don't read messages well before you respond  so I am going to concentrate on giving chemaine advise based on what I have experienced and what I have seen with friends.
First of all,  a lot of things you said above are wrong
-Reducing  intake of pain medication can not make you ill (Because I said reduce I did not say stop).  Its taking high doses over a long period of time that can make you sick !
- You said that athritis pain relievers (I said athritis pain medication on my message) are not hard on your kidney unless they contain tylenol.   Actually Tylenol is one of the only few pain medication that are not hard on your kidney and also not hard on your stomach if you have stomach ulcer.


So Chamaine,
since you said you have tried many treatments, including surgery and nothing worked.   I absolutely recommend that you do those tests  that  I gave you above it worked for me.  I used  to take pain medications   alot and the pain was still there until I went through some serious PT on my own.  And now I am Happy with were I am.  Pain medication is not a long term cure.  If you depend on it  you will remain in thesame condition.  The plan is to get past you condition and get better.

Heather She said:

" i am on  Naproxyn, Oxyconton, Neuronten, and Percacet. have not had a full nights sleep since march of 2003"

and you dont think that my advice for here to do those tests are well founded?  - No I think she should try  other things.



Chamaine try those tests.   when I say PT exercise at hone,  I mean you do  the ones that Your Physical therapist showed you.  Obviously it most be safe and helpul for your condition.  I am just saying to be serious with it duing your test period to see what happens.
Once again  
1. first test  is to see if those pain medication are actually helping  and
2.  second, See if PT  helps you if the pain medications are not stopping the pain.

As for me  when  pain Medication was not working.  Exercise worked wonderfully.

So  Chamaine I hope the excersise  makes some difference for you

regards

Mark

[Mark524]

Heather,
One mpre thing.   You said that  the range of  motion she has is considered fully functional.    

"That flexion is considered fully functional, so it doesn't sound like range of motion is her main complaint.

Fully Functional !! - I think that is a wrong remark too.   She has  a range of motion of  3 -130  and believe me that  3 degrees that she doesn't have for extension of the knee is no fun and I am sure  it is  a main source of pain.   Because your body needs your knees to be straight when you are standing, otherwise pressure will be applied the wrong way to that joint and that will result in paid..   If  I did not  hurry  up and finish the  6 degrees I had for  extension soon after my trauma.   I am sure it would have been filed with scare tissue by now.  
Charmaine said it hurts when she bends in her first mesage above.  That why I recommended that she push through that pain once and for all.  It would be a long term achievement.
In your other post, You said you have genetic disposition to form lots and lots of scare tissue quickly.   So dont give all this advice with you unique disposition.   It will not appy to most people.

Mark

[Mark524]

Here is an example of improvements from pushing through the pain.  You said Pushing through the pain is not safe.

Posted by Kathleen in this section: http://www.kneeguru.co.uk/cgi-bin/KNEEtalk/YaBB.pl?board=chondral;action=display;num=1090360560

read it for your self below


Re: 3-weeks post op
« Reply #3 on: 07/22/04 at 17:14:30 »  Quote  Modify  

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Angie,

You certainly sound like you are doing well.  Your ROM is certainly better than mine was at your point.  I'm just reaching 127 now at 6 weeks and that is with my PT pushing really hard...quite painful I might add.

Regarding the super sensitive skin...I think that is normal.  I have it as well.  I had an open procedure with a 6 inch incision and all around it is still super sensitive and numb in spots.  It had definately gotten better but the numbness hasnt changMed.  OS says it might never come back.

The magnet thing sounds interesting.  I heard someone else mention it once but never tried it.  Hey, if its working for you...keep doing it.  
___________________________________

Mark
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http://www.email-marketing-horizon.com