Arthrofibrosis and TKR - advice please!

[nolamak]

Hello!  I would love some advice from you folks......

I will give as brief a synopsis of my knee as possible.  I have had degenerative arthitis since my early 20s (am now 44).  Four years ago- a surgeon told me of a procedure that would make my knee "just like new" - Carticel (ACI).  I underwent the procedure and he put in two grafts.   From the beginnning - recovery didn't go well.  Scar tissue began to take over - he performed two scar tissue removal surgeries, only to have it grow back.  Doc said there was nothing more he could do.  Found a surgeon nearby who subscribed to the method I have read about here....open surgery of the knee to remove scar tissue, then full cast, then aggressive PT.  I underwent the surgery, but unfortunately, the cast was applied incorrectly - and I ended up with two large wounds on my lower leg from it.  By the time the dr took the cast off, much of the tissue around the wounds was necroctic and the wounds went all the way to the bone.  As a result, they had to excise the tissue and now the primary focus was healing the wounds - steriods were not an option nor was the aggressive PT (it tore open wounds).  Dr. said that the inside of my knee was almost completely devoid of cartilidge and neither of the carticel grafts were still in place.  He said the only option left to me was a total knee.  After so many surgeries, I waited two years to do the total knee.  Plus, I was pretty worried about scar tissue issues with the replacement.  I had 3 different surgeons assure me that chances were slim that the arthofibrosis would be a big factor - scar tissue shouldn't adhere to the new parts and PT can start the day of surgery.  So......last December 28 (2011), I had a TKR.  And guess what?  Five months later - I am totally locked down with scar tissue.  I have significantly less ROM than before the surgery and near constant pain.

My surgeon now says that I have 3 options  - 1.  a revision....which he gives less than a 5% chance of success - given my scar tissue history  2. to fuse the knee or 3. to amputate the leg

These don't strike me as ideal options and I am desperately scouring the internet attempting to find anything that will give me some hope of pain relief - and ideally...mobility.  Has anyone out there beat the scar tissue with a TKR???

Thank you!  Sandi

[starpolisher]

Sandi,

My heart goes out to you!  Where do you live?  It sounds as if you've been involved in a nightmare and dealing with a doctor who really is clueless!  I want to give you hope.  The reason I asked you where you live is because I have arthrofibrosis in both my knees and not until I moved from NY to Indiana did I get help and though I still have issues, I am so much better than I used to be.  I had a double TKR in July 2005 at a general hospital in the suburbs of NYC because I didn't want to travel in to Manhattan (we lived 45 minutes from NYC but with traffic....it can be a trip).  After my surgery, I went to a rehab hospital and never did well.  I felt like the flunkie of the group of patients who were having rehab for TKR's.  A double tkr was a big mistake to begin with and one knee felt as if I had a boulder in it.  My ROM was poor....never got above 70.  My surgeon was always too busy to have me come in and see him earlier than my scheduled appts. (vacation for one) and put me off a lot.  I never felt good about my surgery and my knees were horribly stiff and painful.  I was very, very good about my physical therapy!  I started searching the web for symptoms similar to mine and when I read about arthrofibrosis, I felt almost positive that was me.  Sure enough....when he finally saw me, I could see the look on his face.....and I just came out and said "I have AF, don't I?!"  He said "yes" and looked very surprised I knew what it was.  I told him I needed a second opinion and you could see the relief on his face.  I went to the #1 ortho hospital in NYC and had an excellent surgeon and he was blunt: he was very kind but he said "you have the worst complication for joint replacements."  But he added he would do all he could and said one knee had a spacer that was too big for me....the one that felt like a boulder was in it.  He took out all the scar tissue from the one knee, put a proper spacer in, and did an MUA (manipulation) on the other.  I had a lot of PT but I never got better.  I kept getting worse and was frightened.  He thought perhaps I was allergic to one of the components and had my blood sent to a lab to test it and he did admit it was controversial (some false positives) but what no other options.  It came back that 3 components were fine but I seemed to be highly sensitive to the cement.  I had a revision 5 months apart in each knee in 2008.  I had a lot of physical therapy and a cpm machine at home.  He told my husband he didn't know how I was able to walk with all the scar tissue in my knees when he replaced the original implants.  I remember the sinking, sick feeling when the stiffness came back.  I searched for doctors on this site and we moved to Indiana because my son chose IU to go to college and there were several doctors in the area who were familiar with AF.  I went to Dr. Shelbourne's clinic in Indianapolis, but he was good at helping people with AF without implants.  I saw his partner who had done joint replacements and used a machine called an elite seat they had developed which did give me some improvement in straightening my very bent knees, but when I'd get on the bikes, I would lose the straightening and finally, after a year, was told nothing could be done.  A woman I met in the town we lived in asked me what was wrong with my knees.  I told her I had a load of scar tissue in each one.....I overhealed....made too much.  She told me about a physical therapy place she went to for scar tissue after a back operation and how this procedure called Astym really helped her.  She begged me to call them!  I did the very next day and they were actually waiting for my call!  I have been going for Astym treatments and PT since May of 2011.  I go for 2 months and then have to rest 2 months and then go back, rest again, etc.  I suggest you go to a website: www.astym.com and you can read about the procedure.  They use acrylic tools to break down your scar tissue.  The procedure was invented by a doctor in Indiana but it's not hard to find places in the Midwest that do Astym.  It's not common on either the east or west coast but it is growing.  Some professional athletes have benefitted greatly from it and it's now spreading because of that.  One knee always seemed to break down easier (the scar tissue) than the other knee, but finally the worst of the two is now coming along and the scar tissue is breaking down.  My skin used to be extremely tight on both knees and I had a lot of pain.  Now my skin is very loose over one knee and getting looser over the other knee.  My rom is not great.....very slow progress.....they can't get it all.....they can't get into the joint....no cutting is involved......but the constant massaging and working the tools over my scar tissue is breaking it down and I am not making anymore.  Surprisingly it was much less painful than I thought it would be.  I would advise you to go to the website and copy the phone number and get a list of therapists closest to where you live (it's not in Europe).  You can email them as well and ask them questions.  I always got very quick responses and my PT took courses in Astym (it's required) and has helped me so very much.  As I said, I will never be as good as I once was, but I do have pain relief and walk much better.  You do have to be patient....it's not a quick fix with AF in the knees.  Many conditions require 8 to 10 treatments only, but I've had over 50......and still going.  As long as there is scar tissue they can break down, I will keep on going.  I hope this helps.....I hope you can get help.  I have read of one poster on here (Decruz) who came to the US from Europe and hasn't had any luck with Astym, but I do know a few others have had it and it's helped them as well.  Our condition is rare and many doctors are totally clueless.  Many ortho's never have a patient in their entire career with AF....I wish you all the best of luck.  There are 2 other types similar to Astym (one is Graston...it was the first and I hear it's quite painful).  The doctor who developed Astym was working on Graston but not happy with it.  Another type (forget what it's called) is also being used though I have read it is not as effective as Astym.  The doctor who developed Astym has posted on here and explained the differences.....I think he is "Sportsdoc"....not positive.....but he has posted on here and been very helpful.  I just want to give you hope!  I am greatly improved though it's taken quite some time. 

[nolamak]

Hi!
Thank you so much for your response.  It is so reassuring to know that there are others out there. I have actually had a string of doctors.  I live in Raleigh, NC.  The first one that did the Carticel surgeries was the worst. Then I saw another who referred me to Dr. Creighton at UNC.  He has conducted several studies on AF in the knee.  Unfortunately, his team was the ones who screwed up the cast. And then they have a hard rule - no TKR before age 50.  I was 41....Dr. creighton said there was no way I would make it 9 years.  I would need to find yet another surgeon.  I did a lot of research and thought I had found the right guy at Duke.  In all fairness, the surgery itself did go well...he just wasn't prepared for such "amazing" scar tissue growth.  And when it happened, he didn't react well. 

I am excited to read about the ASTYM process.  I am keeping my fingers crossed that there is a practioner near me.  I briefly tried someone doing the Graston- but the pain was so totally overwhelming, I stopped. 

Again, thank you so much. This gives me hope that maybe, possibly I could make a revision work.  Honestly, I was very seriously considering amputation...a prosthesis would give me more mobility and less pain than now.

Sandi

[captainruss]

Sandi,

As you can see, I have had somewhat of a similar path.  I have had eight TKR's over the past couple of years.  The options I am looking at are amputation or fusing it solid.  Actually, fusing my knee solid is just a stupid recommendation.  Yes, it may reduce the pain in my knee, but the pain in my lower back and hip from my limping would cause considerate 

The most important thing to do is get MANY opinions....I had six (3 OS and 3 infectious disease) doctors diagnosis and they were all the same.  They swore I was infected despite the fact that every single culture for infection came back negative.  I am still trying to understand how they can do the bone scans, indium 3 phase bone scans, tissue samples, fluid samples, blood samples and despite every single test (100 percent) came back negative, the joint was taken out seven more times.

I am looking at a company that does power assisted artificial legs that help people with prosthetic legs.  I am trying ASTYM, but my condition has worsened due to their continuously carving out my scar tissue.

I now must deal with HO (Heterotropic Ossification) which is bone growth that.  I flat don't care what they say about their backgrounds...they don't have a clue. 

Russ

[starpolisher]

My surgeon at HSS and my OS doctors (2) in Indiana are convinced my AF is genetic.......overhealing to such extreme extents.  I had thought of amputation but if I overheal so much, wouldn't amputation result in excessive scar tissue AGAIN!.......I did all the pt recommended and was so vigilant.  In fact my doctors and therapists say I have very strong legs.....and my therapist sees how well and how many exercises I can do......she said it's obvious I am very disciplined in doing my exercises.  I am so glad I didn't have more surgery as I wonder when I read about Captain Russ and his problems and Decruz.....plus others who have had more operations than I have and developed RSD.......maybe if I kept having surgery the Astym wouldn't have helped me so much?  Just guessing.  I just don't think amputation is the answer.  Before you do something so drastic, I would suggest you consult with someone like Dr. Noyes (in Cincinatti) who has an incredible reputation. 

Since I have AF in both knees, it's interesting how both have reacted differently......on responding much quicker to astym and one taking longer and yet, by going for over a year, my one stubborn knee is doiing much better and finally the scar tissue is breaking down!  I am in the healing phase from 2 months of treatments and will take off 2 months, see where how I feel, and probably begin again with another series since I still have lumps of scar tissue......but I have A LOT LESS!

[carolelinda]

Star, I have been suffereing from severe arthrofibrosis since my RTKR in 2006 (had partial revision in 2007 and it got even worse afterwards).   My ROM is less than 90 and the stiffness is unbearable. I cannot find any specialists near me who know about or offer ASTYM.  Had my surgery at HSS too but to get back there is a hassle inasmuch as my movement is so compromised. My other (formerly "good") knee is now acting up.....have been told it's not bad enough for a replacement but torn meniscus means PAIN and with the results I had with the left knee I cannot even fathom going through it again only to have the same thing happen.  I literally formed scar tissue overnight.  I wish you good luck in your treatment.

[starpolisher]

caroleinda......I wouldn't go back to HSS.  We moved to Indiana because my son chose IU for college and I noted that several doctors (Noyes in Cincinatti and Shelbourne in Indianapolis) were written about on this site.  Dr. Shelbourne is good about helping AF, but NOT if you have implants.  I saw his partner, Dr. Urch, who did joint replacements.  He told me that they were much more aware of arthrofibrosis in Indiana and if a patient started having stiffness, they didn't wait.....they immediately changed therapy and have been successful in the early stages of AF.  I saw Dr. Urch approx. 2 years after my revisions and had a lot of scar tissue. 
Dr. Sevier in Muncie, Indiana worked on Graston and then developed Astym.  Because no cutting was involved and he had my pt go slowly and gently (so not to start the making of scar tissue)  and I made progress.....slow.....but I progressed.  After a year of going 2 months on and 2 months rest, etc. this last 2 month treatment I went 2 times and the therapist was more aggressive in using the tools.  I was sore, but I wasn't making scar tissue.....my skin just got looser!  I knew they were breaking more and more of it down.  My ROM was never better than 70 after my operations; I too seemed to make scar tissue very quickly. I haven't had nearly as much surgery as many people have on this forum.  I had a double tkr (I think this is a BAD idea.....too painful) and then when I changed to HSS, the surgeon noted the previous surgeon had used a spacer in one knee that was too big for my knee and the other one was okay.  He removed the spacer, put a smaller one in and cleaned out the scar tissue.  He did an MUA on the other knee.  But it wasn't long before I could feel the stiffening coming back.  Finally I had revisions, 5 months apart, and all the scar tissue was removed but it came back with a vengeance!  To have more surgery would only cause more pain and more scar tissue growth.  That is why the Astym is ideal for me.  I think if I had kept having surgery, I would wind up with more complications.  These are very difficult operations ..... very hard on our bodies!  They went very easy on me when I had my Astym for the first year and then got more aggressive.....not to the point that I yelled or anything.....I'd say "Ouch" and then they would ease off.  I've had some bruising but mild....nothing really major.  I was afraid a few times when I had a more aggressive treatment.....having this AF come back is terrifying.....but it's never happened with the astym.  My ROM has been slower to improve......but it's now 80 and I have had times where it's been over 80.....I never had it this good.  I have a Tens unit at home now for pain relief.  I do special exercises....not a lot.....my therapist changes them a lot.....she has worked on my posture and gotten rid of my lower back pain.  I am doing leg strengthening exercises now ...... I do a series of standing up from a bench 19" high....first using both feet (no hands to push myself up) and then I put one foot out so there is more strength being developed in one leg and stand 10 times like that and then finally the foot that is out in front I have only the ankle resting on the ground and so it requires even more strength to stand.  I do these every day plus about 5 other exercises.  She doesn't have me keep doing the same exercises over and over.....once I've achieved a goal, we move on to improve something else.  Walking with AF really messes you up and she's undoing a lot of bad habits I got into and I feel so much better.
I vacuumed the house today and for the first time I wasn't sore afterwards!  I was a major mess before May of 2011 when I began this therapy.....mostly in bed and wondering how I would get through life.  Astym is now starting to be popular among professional athletes so it will spread around the country....I had read that it greatly helped some very good athlete who had really hurt his leg and they were very concerned his career was in question....it was the first time Astym was tried and the results were very good.  I know it's not for everyone and it 's not the answer for everything......but I was at a standstill and it wasn't until a lady asked me what was wrong with my knees.....not ONE doctor ever told me about Astym.  I did telephone my therapist at Dr. Shelbourne's Clinic and I told her how much it helped me and asked her to pass it along to them.  I have heard Graston is used at one Indiana ortho hospital, Astym at another one and yet another breaking down of tissue at another.  The one that uses Astym is supposed to be the #1 Ortho Joint replacement hospital in Indiana.

[captainruss]

Star,

I wonder if there is a way to have some doctor do a class action suit against all of the doctors who perform orthopedic surgeries without knowledge or a plan to deal with AF or HO??  I have struggled trying to get a malpractice doctor to consider my one case, but the same message comes out of each AF complication......the doctors did not know what to do and gave up.

Russ

[starpolisher]

I get the impression that the few doctors who are most knowledgeable are trying to push their types of therapy.  I think a lot of it comes down to money.....I am not saying these doctors shouldn't be rewarded for their efforts to find answers for us, but they do make money off of their particular type of surgery/therapy.  I think they focus on that.  I think it would be hard to find a doctor who would put his/her energy into a class action suit.  Every single ortho I've spoken with (one very poor one and the rest have been good....a few have been outstanding) all say how rare our condition is and many orthos go their entire career without seeing one case of AF!  I am hoping the big name hospitals will be more open minded about our condition and educate themselves and insist that therapists take a different approach.  I know I have had therapy that has made my AF worse because it was WAY too aggressive!

[nolamak]

Interesting to hear everyone's opinions about drs after the AF diagnosis.  I have had four ortho's "quit" on me.  Essentially, we always get to the point in treatment where the doctor says...."gosh, "I don't know what to do for you now."  And they shuffle me out the door.  The latest one (who did the TKR) actually said "we had hoped for much better results."  Oh really?  Me too!!! 

I have been wondering about the genetic component as well - autoimmune disesases run rampant in my family.  In particular, my mother and her sister had scleraderma - thickening and fibrotic growth of ALL tissues (essentially turning the whole body, step by step, into scar tissue).  All of my orthos have discounted any possible correlation - but it certainly makes you wonder.

Not sure where I go from here.  My husband wants me to find an ortho (preferably on the East Coast) who specializes in AF.  Any suggestions?

Thanks. 

[starpolisher]

nolamak,
Autoimmune diseases are VERY common on my dad's side and I seem to have inherited my health from that side.  I also have genetic panic disorder which flares whenever I have a health issue or pain.  I lived in NY and couldn't find help for my AF......Astym, Graston.....manipulative physical therapy to break down this tissue without cutting was developed in Indiana....where I live now.  I am far better off her than I was in NY.  They are not aware enough about AF.......my pain level is much better and my rom is slowly improving.  If I stayed in NY, I wouldn't be walking.  I had both knees replaced and revisions in NY and only got worse.  At least read about Astym and Graston.  I never had Graston...more painful I hear.  Astym may be slower (probably is because it's gentler) but it has helped me so much! www.astym.com  The doctor who developed it has posted on this forum under sports doc (I think).