I think I may have the curse of the scar tissue

[hillyx]

Hi to one and all. I am a newbie to the forum and would like to hear from anyone who is or had suffered similar complications after replacement. I had my left knee replaced in May 08 athe the tender age of 42. Things seemed to be going to plan for about 8 weeks then my movement went to 80 bent and 25 straight. This led to an MUA operation in late Oct 08. Since then after intensive Physio movement got better. Today I am at 60 - 30 and waiting to go back in May 09 for another MUA and surgery to cut away scar tissue. My knee is still imflamed I walk with a very profound limp and wake up every 2 hours at night in agony. I am interested in hearing from anyone who has a view or is suffering similar complications. I am very low at present and to hear from anyone with opinions would be great

[Roma]

There is so much information on this web site about scar tissue and you definitely need to start reading it.  First of all, if you have arthrofibrosis an MUA is the worst possible treatment for it because it onlly makes it worse. You need to talk with some of the people on this web site like Janet, Missmyknee, and others who can give you a wealth of info.  I had double knee surgury in 2005.  My OS did not have a clue what my problem was when I began to experience tightness and pain and I say it felt like chicken wire wrapped around my knees.  He did an MUA and it was the worst thing that could have happened.  This is 5 years and 5 total knee replacements later and I am still fighting scar tissue.  Please read the posts on here and talk with others who have been through this and get the RIGHT doctor before you go any farther.  I don't know where you live, but there are doctors that deal with scar tissue and are experts.  It was a long time before I found this web site and I live a long distance
from an arthro specialist, but I think I am going to have to break down and go see one soon.

[skibum9]

Please read the arthrofibrosis tutorial by Dr. Noyes in the Information Hub. I just had a TKR 5 weeks ago at the tender age of 44 due to 2.5 years of damage to the knee from scar tissue problems. I'm battling the reformation of scar tissue like crazy with medications and intense PT.

Given how far out you are from your original surgery and the maturity of the scar tissue, the scar tissue should be removed before a manipulation of the knee is done. Also, it's been my experience that the average OS doesn't really know how to treat and deal with scar tissue. They can make the situation worse. If possible, I would recommend a second opinion by one of the AF experts that deal with TKRs and AF.

Hopefully, Janet or Missmyknee will chime in on this subject. I don't mean to scare you, but AF is nasty business and needs to be treated correctly.

Sharon

[hillyx]

Hi Sharon
Thanks for your reply. The plan of action is on the 15th May 09 to cut away all the scar tissue then MUA. My concerns are and these have been relayed to the OS that if I am subsetable to scar tissue build up then surely by doing what he plans will only multiply the problem afterwards. I am between a rock and a hard place as I have so little movement constant pain and need results quickly
Regards
Iain

[Janet]

Iain:

I'm so sorry you're having such a hard time. First of all, MUA is a good treatment for early scar tissue formation following a TKR because of the possibility of infection with surgery. But now that the MUA hasn't worked for you, the surgery is necessary.

I had a TKR at age 49 following four previous knee surgeries. The first surgery was a quad tendon rupture repair; the other three were to remove scar tissue and try to limit the damage it had caused. Unfortunately, the knee continued to deteriorate, so I needed a TKR. At five weeks post-op, I had a MUA. Fortunately for me, the MUA was successful. Even so, I can understand what you're going through.

I would make sure your OS has a plan for stopping the scar tissue from causing a problem. There is no sure preventative, but he should have some plan! Will you be in a CPM? Have a nerve block? Be in PT immediately? I was told the scar tissue WILL regrow, the aim is to keep it from attaching and maturing in the wrong places.

It never hurts to get a second or third opinion from an OS that specializes in problem TKRs. If you have ANY doubt that your OS is on the right track (even a little niggling, even though you really WANT to trust him), please get a second opinion! Good luck to you.

Janet

[hillyx]

Hi Janet

Thanks for the reply. The plan of action is apparently injection with nerve block immediately after operation with 3 days continuous CPM before they release me and then pro-active PT.

Regards, Iain.

[starpolisher]

Dear hillyx,

I had a double TKR and also have arthrofibrosis.  It was discovered that I was allergic to the cement used in my implants so last year had to have them removed and new ones put in.  This time I had one done at a time instead of both.  I don't recommend having both knees done at the same time!  Where do you live?  this is key in finding help for this rather uncommon complication.  I live in NY, just north of Manhattan and have gone to Hosp. for Special Surgery, renowned for excellent orthopedic care (it's an orthopedic hospital) and have a wonderful surgeon. 

What is so key is the aftercare......physical therapy!  I did not have good success with the first therapists I had but now have a very good therapist.  I also have a CPM machine at home and use it constantly.  I ice my knees after exercises and therapy.  Unfortunately I am still having problems though not as bad as the initial implants. 

My son is going to start college in southern Indiana and we are moving there because there are 2 doctors who are renowned for excellent care for arthrofibrosis.  There is one doctor in Cincinnatti (Dr. Noyes, I think) and not that far from where we would be living and Dr. Shelbourne in Indianapolis.  What is so important from all I have read is they have outstanding physical therapy for us and are much more sensitive to this problem.  While Dr. Shelbourne has been exclusively treating arthrofibrosis patients who got it from either serious injury or surgery, he hadn't been treating those with total knee replacements.  This is changing.  I called his nurse a few months ago and was told they are getting patients with arthrofibrosis who have knee implants and they are hiring a new doctor who does TKR's and will be on staff to help those patients with knee replacements.  I have been struggling with arthrofibrosis for almost 4 years now and kept trying to work during this (after healing and therapy) but the scar tissue just got worse.  I am now on long term disability and not happy about it.  But I consider myself blessed; I will be able to move closer to doctors who are more knowledgeable and while I don't expect to be perfect, I hope to avoid the pitfalls that so many orthopedics and therapists make when treating those of us with arthrofibrosis.  It's my understand that there is a good doctor (Steadman) in Colorado and several in Ann Arbor.  I think I read that there was a surgeon in California as well.  What is sad is there are so few doctors who really know how to treat us.  It's a terribly disabling and painful condition.  I am on morphine for mine and have been for quite some time.  I have cut back as time has gone one because it's too easy to keep needing more to block the pain.  I just take enough to take the worst of the edge off and then when I go to therapy I take extra.  But that is generally the only time.  I don't want to increase but decrease my amount.  I truly hope one day I will be able to stop these types of pain meds for good but I don't know how others have done in terms of being "cured" and not needing any pain meds.  I am limited because tylenol raises my liver enzymes too easily, acetomenaphine makes me feel "strange....sick" and i'm highly allergic to Aleve.  I sometimes take Celebrex and that seems to agree with me.  My stomach is sensitive though and my diet has changed a lot.....very easy to digest foods and not spicy. 

Learn as much as you can about this condition and good luck! 

[hillyx]

Hi
May thanks for your kind words and very useful insights. I am booked in for 15th May 09 and keep you all posted
Regards
Iain

[Jaci]

Hi there,

Your doctor has a plan for the first 3 days post=op. Scar tissue can start forming in that time, but it's generally a few weeks before it really gets going. What's the plan for beyond the first 3 days?

Go to the the information hub link in the upper right-hand corner of the page. At the info hub look for the arthrofibrosis heading and start reading... Read everything. You cannot know too much about this condition.


Best of luck,

Jaci

[hillyx]

 Had pre op assesment on Weds. Plan of action is MUA then surgery to remove Scar Tissue. Followed by 3 days of CPM and intensive physio, all of this due on the 15th May , everything is crossed apart from my knees ( as I cannot )

[starpolisher]

Hi hillyx,

It's interesting that I had surgery on my left knee more (original implants showed i was allergic to cement) and at the same time MUA on right knee.  I also had a spacer put in left knee and another MUA in right knee.  Today, my right knee is most problematic.  We are getting house in order to put on market to sell and my knees are taking a beating and the lack of rest is hurting them.  I am trying desperately to put my faith in God and that when we move to Indiana, I will find a doctor who can help me there (either Selbourne in Indiana or Noyes in Cincinnati).  I have been doing so much work sorting....have so much pain now.  I feel that one of these two doctors will be my answer.  If MUA's a done, it is my understanding they arthroscopically remove scar tissue and then do MUA to make it easier on knee.  Correct me anyone if I am wrong.  Just hoping i get my legs back.  You all have my prayers!

[hillyx]

Surgery on Friday 15th May to remove scar tissue. Hopefully be able to walk properly again soon