I want your arthrofibrosis success story please!!!

[ziggy]

Star = I think your experience is very powerful. Is Medrol cortisone? If it is I would have thought it would have made rosacea worse.


Heather = I have always been fascinated by medicine (I was married to the son of a haemotologist lol). I have access to the local universitys online journals so if there is an article you want I might be able to access it. Do you not have work policies for people with disabilities? At the moment in South Africa it can actually help you to get a job. I am a true believer in life long learning and enjoy doing courses whenever I have the time.

[heather_rae]

Ziggy:
Yes, Medrol is methylprednisolone. So, does rosacea actually have an inflammatory component or are they using the drug for other effects that it has? As far as integumentary side effects though, I'm thinking delayed would healing, bruising, acne. Well, Great that it works!! It's done wonders for my kid with respiratory problems, too. Betamethasone, however, I can say is doing absolutely nothing for patellar tendonitis on the 3rd round. My theory is that the drug cannot penetrate deep enough into the tendon using iontophoresis. Funny how PT can just administer it without an order. Nurses would be in BIG boo-boo for that.

My only hope of returning to work on "light-duty" would have been if I were working for an employer who offered it when I was injured. Potential new employers have told me that the light jobs they retain are for employees already actively working there. My employer holds your position for 90 days and then you must re-applying once you've reached 100% recovery. When you consider what the Dept. Of Labor states about each job classification, I would need to be able to function at a "medium" work capacity for nursing.

Employers can mandate strict physical ability requirements per potential employees such as the ability to lift 50 lbs. Right now, my maximum dynamic load is 10 lbs. I highly doubt I would pass any of the pre-employment physical exams, either since I scored so poorly on the functional capacity exam a short time ago. There are agencies who assist disabled people in seeking successful employment. Unfortunately, I would not qualify for nursing positions, right now. I'd have to settle for some other kind of light work.

Fortunately, my auto insurance will help with my wages until I can go back. Until then, I will continue my 3 hour 3x/week PT, HEP, and 1 hour 3x/week massage therapy and see what happens. Not much room for a full-time job with that schedule, either. Also I wouldn't be able to take time off from a new job if additional surgery will be needed. Well, I do know of one procedure that I need for the cartilage damage, but am unsure of what procedure and where, yet. I've sent a message to an OS at U of M and awaiting his response. I am interested in Regennex injections for cartilage regrowth. If you have any journal articles about it, I would love to have them!! I'm also interested in the AF literature. Maybe I'll go into orthopaedic nursing later on LOL!! thanks!

Heather

[ziggy]

Hi Heather

I searched the databases for any info on Regennex but it must be so new no articles even from medline. I presume you have read what you can on www.regennex.com

[heather_rae]

Ziggy:

How are you feeling? Thanks for the info. I need to find who does Regennex injections ,where, and if I'm a candidate. Less invasive, thus less scar tissue, right? Not really interested in a 3rd open knee surgery at this point, but would like to save the cartilage to avoid worsening of wear/tear and a TKR. The OS said the defect is pretty deep but, I am unsure of what grade (think it's bone on bone) and it is supposedly behind the kneecap. I searched through my OR reports and couldn't find it.Too bad he doesn't participate in the procedures to repair it. I just have this gut feeling that if the tight/heavy/rigid scar tissue were removed and/or cartilage repair I could stop "spinning my wheels" in PT and get on with life.

Pain is officially stopping my activity before muscle fatigue does now. I'm only in my 30's so, I have a long way to go until I can retire. For example, I was swimming with the kickboard again yesterday and the pain stopped me before the leg itself felt really fatigued. It kept me awake last night and even worse today. I get the same thing with walking, too. Seems like the PT and OS are playing the wait and see game too long for me. Or do you feel I am getting too ansty at this point?

Speaking of stem cell trials, I had a quadraplegic patient who went to Portugal a few years ago for a trial procedure. I saw her about six months later and she was able to pick up and drink from a glass. It wasn't a very fluid motion yet, but she was able. I was completely amazed. Thanks you and take care!

Heather

[ziggy]

Hi

No I can understand your frustration. I have been struggling with AF since I had my knee replacement age 42 now I am 49. I get really frustrated too with every dead end. I feel as long as there is a glimmer of light in a very dark tunnel I can remain optimistic. I remember one OS I saw telling me nothing could be done and to learn to live with the problem. I refused to leave his rooms until he had given some of the hope back that I walked into his office with.

What are you taking for pain? I love swimming but with an almost complete lack of ROM I cannot climb the ladder to get out of the pool anymore. I also have a bone on bone lesion in my right knee but at least I dont have AF in that knee. Had an artroscopy about 2 months ago to clean out joint and it feels better at this stage.

There are contact phone numbers on the regennex site they must be able to rell you who does the procedure and where. I read an interesting study today using fluoroquinolone (antibiotic) to minimise AF and other scar tissue after surgery. I am planning to show it to my OS when I see him next month.

[bella287]

hi all ,
i have had 5 surgeries on my rt knee. i finally had a tkr in january. i was doing good for about a month then started losing both areas of rom. flexion was 95 and extension was 10 to the bad. i had a mua around mothers day. i got my flexion to 120, which my pt said was the furthest a fake knee will bend. my ext is 5. if i lay on my belly and hang weights 6lbs on it it will go to 0 but the next day right back to where it was. i also have a lot of pain stil sometimes as high as 9. it feels like a rubberband thats very small is in my leg keeping me from extending it. am i making a mistake letting pt be so aggresive i have read a lot on here about arthrofibrosis and how pt should gentle so as not to cause more scar tissue. i also have fibromyalgia and chronic fatigue syndrome which are thought to be autoimmune diseases which i read might be one of the causes of arthro. my current os wants to do another mua and has no clue about arthro. i have found 2 os,s willing to see me. i guess my questions are, should i not do the mua and keep looking for dr,s that are arthro specialists and also should i just do gentle streaching and stop letting pt be so aggresive trying to get rom back. i just want the pain to stop. thanks all bella

[ziggy]

Hi Bella

Really sorry to read about your troubles. I think you are right in wanting to find an OS and a PT who understand arthrofibrosis as it is a very complex problem compounded by your Fibro and Fatigue Syndrome. I would certainly question whether your problems are fibro related or athrofibrosis. I have a friend with Fibro and know how much it stiffens her knee. Both AF and Fibro need expert attention by OS and PT and if they do not understand there is the possibility of overworking the joint.

I am no expert and have not solved my AF problem so that is just my 2 cents worth.

I have read a few times about AF having an autoimmune aspect all my research tells me that AF may be caused by a overly strong immune system.

[heather_rae]

Ziggy:
I really don't take much of anything anymore for pain. I've tried hydrocodone, ultram, motrin, Celebrex, and lidoderm patches. Nothing really works on the pain and mostly make me nauseated so, I just "deal' with it. I ice it alot and sit in the bathtub, then sit with it propped on pillows. Believe it or not, that works better than anything for a little while. I have a pretty decent pain tolerance, too. It can get up to about a 7 on the scale before I get impatient with it (which happens alot).

I may have found a way for you to get in water, too. Are you squeemish about lakes or man-made ponds? I don't like mucky yuck so, I go swimming in clean, weed free areas. I have major trouble with ladders, too. I just enter the water from the beach where it's shallow. Then, I use my floatation "toys" to exercise with.

Funny you mentioned fluoroquinolone. I took it as a pre and post ATB for infection preventatives because I can't take PCN. How does it work for AF? I'll seach the Regennex website for contacts. Thanks! Heading off to the OS now. Chat with you later.

Heather

[Janet]

Heather: I've never heard of Regenex, either. I hope you find it can help your cartilage defect behind the patella. Before my TKR, I was told by my U-M OS that none of the cartilage restoration treatments worked behind the patella. If they have come up with something new, that's a huge advance.

Bella: I agree that you should definitely get an opinion from a doctor who knows about AF. It needs to be treated differently than just the "run of the mill," common type of scar tissue that comes about following surgery or trauma, gets treated and doesn't come back. People who continue to lay down scar tissue outside of the norm need very specialized care. It would never hurt to get another opinion, but it could hurt to have another MUA and have the scar tissue return again.

Ziggy: My OS is a member of the Knee Society, a group of TKR doctors who are interested in research. They meet together to discuss advances, etc. He knew of another KS OS who was doing some research on different injections done during the TKR surgery to control the growth of scar tissue. I don't know what ever came of that research, though. I guess I'm trying to give you some hope that there are surgeons out there who are trying to find ways to deal with this problem. I hope there's something in the near future that will help you! Here is an abstract that you might find interesting from their website (kneesociety.org).

Janet

COMPLICATIONS DO HAPPEN:
HOW TO AVOID THEM AND WHAT TO DO
The Management of the Stiff TKA
William J. Maloney, III, MD (Stanford, CA)
Range of motion following total knee replacement is an important outcome measurement as it has a
significant impact on the ability to perform activities of daily living. The stiff total knee is also often
painful and thus patients often require a secondary procedure.
When evaluating a stiff knee, it is helpful to know if the patient was in a high-risk group for limited
motion pre-operatively. The most important determinant of post-operative flexion is pre-operative
flexion and those patients who have a pre-operative flexion of less than 90 degrees are more at risk for
limited motion. Similarly, post-traumatic arthritis, young age and male gender have been associated with
decreased post-operative flexion following total knee replacement.
Physical examination should include documentation of range of motion, as well as evaluation of patellar
mobility. X Ray evaluation should be used to evaluate joint line position, tibial slope and patellar
thickness. In addition, implant rotation should be assessed. This is difficult on plain radiographs and a
CT scan can be utilized if necessary.
One then needs to make a diagnosis. Based on an understanding of the patient's pre-operative condition,
the limited post-operative motion may simply be an expected outcome. In contrast, t5here may be
arthrofibrosis and a technical problem may exist. In the case of arthrofibrosis, studies have demonstrated
that with both cruciate retaining cruciate-substituting total knee designs, manipulation under anesthesia
can significantly improve range of motion, specifically knee flexion. Knee manipulation requires
adequate anesthesia. If the patient resists manipulation secondary to pain, it increases the risk of tendon
rupture and femur fracture.
In the presence of chronic stiffness or in the case of implant malposition, reoperation may be necessary.
We retrospectively reviewed 23 patients who had revision total knee replacement for limited knee
motion and pain. At a mean of three years after the revision procedure, patients who had soft tissue
releases with component retention and tibial insert down-sizing if possible improved their mean arc of
motion 26 degrees, their mean clinical score 38 points and the mean functional score 21 points. Patients
who at the time of surgery were felt to need component revision had a mean improvement in knee
motion of 18 degrees, but very little change in clinical or functional score. In this series, patients who
had a limited soft tissue approach fared relatively well and were happy with the procedure. In contrast
those who had complete revision were less likely to improve as a whole. It is likely that other
psychosocial factors such as chronic pain syndrome, depression and chronic narcotic usage may play a
role in outcome of both primary knee replacement as well as revision surgery for limitation of motion
and chronic pain.
References:
Keeney JA, Clohisy JC, Curry M, and Maloney WJ: Revision total knee arthroplasty for restricted motion. Clin
Orthop Relat Res 440:,135-140, 2005. (Continued)
47
References: (continued)
Babis GC, Trousdale RT, Pagnanao MW, Morrey BF: Poor outcomes of isolated tibial insert exchange and
arthrolysis for the management of stiffness following total knee arthroplasty. J Bone Joint Surg 83A:1534-1536,
2001.
Christensen CP, Crawford JJ, Olin MD, Vail TP: Revision of the stiff total knee. J Arthroplasty 17:409-415,
2002.
Kim J, Nelson CL, Lotke:A: Stiffness after total knee arthroplasty: Prevalence of the complication and outcomes
of revision. J Bone Joint Surg 86A: 1479-1484, 2004.
Ries MD, Badalamente M: Arthrofibrosis after total knee arthroplasty. Clin Orthop Relat Res 380:177-183, 2000

[heather_rae]

Ziggy and Janet:
Back from the OS appt today with some devastating news. "Patellofemoral Arthritis"!! I had a feeling this was coming, though. Just not as prepared for it as I thought I would be. He wants me to see Dr. W at U of M and is referring me to go. I never even asked to go, he just said it. We were discussing possible permanent treatments for this pain and he is obviously well educated in what's available out there. He said he never mentioned OATS, mosaicplasty, etc, etc. because there is a very small window of people who have success with those procedures. I guess he figures it's worth a shot for them to tell me what their opinion is. I am still asking about Regennex even though it's still in experimental stages. Less invasive is all about me right now. As for the scar tissue, he said he is considering scar tissue debridement this fall via arthroscopy. I was so nervous, my blood pressure shot up. Literally scared to death. Probably the knee pain, too which was very elevated today. B/P's OK. now @ 110/68. whew!!

On the flip side, Dr. Snider feels my leg is looking like a leg and not a little twig anymore. I still have a long way to go, but PT would like to discharge me in about 2 weeks. Unsure of how the chronic tendon flare-ups will be treated or taping/monitoring of the other knee that's been acting up for a few months. I guess E-stim would be put to a halt, too. Stretching and measurements would stop, too. I said I would consider whatever they hash out between the two of them. Doesn't make sense to me to stop working if I still have a long way to go?!? Any input about that, please? Should I ask for an order to see a personal trainer?

Heather

[ziggy]

Janet = thanks for the info. I emailed Dr Maloney at Stanford and hes PA said he is away but will pass on my email. Hopefully I will get some more info from him directly. It does not hurt to try.

Heather = really sorry to hear that you have Patellofemerol arthritis. My OS told me that I could have me patella removed to improve knee function for patellofemerol arthritis. Both of us are too scared to do a TKR on my right knee. I said no way. I would not want to give up anything that was being successful. I would be really scared to go it alone. I do not know how things work over there with your insurance issues. Here we pay for medical aid and things like physio are paid for out of that no questions asked. You just go to whichever physio you want to without needing a doctor to recommend it. So I think it is a bit different.

[heather_rae]

Ziggy:

We have to have Dr. orders to have commercial insurance coverage for Physio. You guys are lucky!! I spoke with my auto insurance adjuster today for continued approval. The PT and OS are in agreement that the leg still needs work and I have not plateaued. The new program offered is through the PT community fitness program. I would still be going to the same place and doing the same exercises/routine, just on my own time. The PT would advance the exercises as tolerated, and then would like to re-evaluate me every 2 weeks (instead of seeing me at every session) to give feedback to the OS. However, my OS cannot order anything for me to stay at Carter rehab at this point. I thought I would need orders to keep insurance coverage, but I guess not. Just a PT recommendation with the Dr.'s signature is sufficient. That's a relief because I don't personally own any of the gym equipment and although a less expensive program than standard PT, still quite costly.

I could never fathom a patellectomy after what I've gone through to heal it. I've also known people to say how much functioning they lost after. One step forward and two steps back. I don't blame you, I wouldn't do it either. I couldn't find sources other than the one Dr. who does Regenexx here. They did e-mail me back and said they would be happy to review my Xrays, but I think it's somewhere too far away to go. I guess I'm going to have to search a little harder. If it's successful, then others will begin doing it, I'm sure. Stem cells can do wonders! You know what really quirks me is that we have to advocate and search for possible treatments that are readily available and our Dr.'s are aware of them long before we find them. So, why don't they just suggest it without making us do the footwork in digging for solutions? I think they are getting lazy. Who knows, you or I could be one of those people in the "window" who would have success with cartilage transfer surgery or stem cell injections. Take care!

Heather

[Janet]

Ziggy: I hope you hear from Dr. Maloney. Let us know! There are all kinds of article abstracts at the Knee Society website. By reading them, you might find other surgeons who you could e-mail, too!

Heather: So sorry about your diagnosis of PT arthritis. That was my problem, too....along with patella baja and infrapatellar contracture. It all led to a TKR for me. I had a perfect knee with no problems, fell on a wet floor and ruptured my quad tendon, had four surgeries in four years then a TKR three years later....all in a seven year period. All the complications of my injury were from poorly treated then undiagnosed recurrences of scar tissue. So I do understand how you feel!

Janet

[willp]

Hello Ziggy,

I developed AF following a plica removal. I wasn't referred to PT after my surgery, and I developed quad weakness and scar tissue under my patella tendons (both above and below the kneecap).

I had a second surgery with Dr Steadman in Vail and had intense PT there for a month afterwards. The PT followed the principles outlined by Dirk Kokmeyer in his tutorial here. ROM only for the first month, strength training after that. I continued PT for over a year post surgery - 6 days a week, 4 by myself.

I was lucky in that I believe I'm not genetically prone to developing scar tissue like some on this board, but got it as a result of bad post op protocol.

I'm about 85% better now, and am able to be fairly active.

For me the key was an expert surgeon, and a very careful PT regime. It was also sheer hard work with PT. I didn't have a proper social life for the best part of a year. But it was worth it....

I hope this helps. Good luck,

Will

[ziggy]

Hi Willp

Thank you. Yes I do believe that the answer lies with a good PT program to compliment surgery. I just have to convince OS that this is the way to go. I have printed out Dirk Kokmeyers programme for my physio and he was really interested. He has asked that if I get OS to do surgery that he be present which would give him insight into the extent of the scar tissue.