Ep 311 – Arthrofibrosis: “I Have a Client Who . . .” Pathology Conversations with Ruth Werner

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0:00:01.3 Ruth Werner: Hey, I have a Client Who, listeners, did you know I have a growing library of NCB approved one-hour online self-paced continuing education courses that you can do any time, anywhere? Well, now you know, current classes include What's Next, COVID-19 Updates For Massage Therapists and A Massage Therapist's Introduction to Pharmacology Pt 1, and brand new, A Massage Therapist's Introduction to Pharmacology Pt 2. Classes are $20 each and they confer one hour of continuing education credit. Wanna know more? Visit my website at ruthwerner.com and check it out. Be sure to sign up for my mailing list so you'll never miss a new class. 

 

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0:00:47.8 RW: Hi, and welcome to I have a Client Who, pathology conversations with Ruth Werner, the podcast where I will discuss your real life stories about clients with conditions that are perplexing or confusing. I'm Ruth Werner, author of A Massage Therapist's Guide to Pathology, and I have spent decades studying, writing about and teaching about where massage therapy intersects with diseases and conditions that might limit our client's health. We almost always have something good to offer even with our most challenged clients, but we need to figure out a way to do that safely, effectively and within our scope of practice, and sometimes as we have all learned, that is harder than it looks. 

 

0:01:43.3 RW: Today's, I Have a Client Who, episode is about a condition you might have heard about, maybe, you probably have when it's called a different name, but that name might not be this thing all of the time, if it is this thing, then that makes things a little bit weird, it might mean changing some thoughts about treatment, but maybe not. 

 

0:02:03.1 RW: In any case, there doesn't seem to be anything like consensus on what to do about this, which leaves making decisions about massage a bit hazy too. It's all very weird. It's Arthrofibrosis, and this story comes from a practitioner with a lot of experience with orthopedic issues, and it goes like this, "Hi, Ruth, after 30 years of practice, I have encountered a pathology I have never heard of, and there's not a lot of info out there, Arthrofibrosis. I have a client, a young man, he's 29 years old and he had some stubborn tight muscles in his fibularis muscles that ended up affecting his knee to the point that his ortho told him he needed an ACL repair that's an anterior cruciate ligament. I'm not sure if there was ever any injury. After the ACL repair, his body laid down bone and fibers that have left this young father of a 16-month-old with about 60 degrees of flexion in a fixed position, he now gets around with crutches." 

 

0:03:05.7 RW: "Apparently, this is an auto-immune disorder that doctors are shunning, much like early fibromyalgia, he's been thrown out of doctor's offices trying to get answers, and his case kind of broke my heart." Wow. Right then, Arthrofibrosis or AF pathologic condition, that's the osis of fibers and joints, in other words, for reasons that no one can predict, a person will experience some issue with a joint, often it's a surgery like the ACL Repair in this story, but it could be an injury or an infection or a neurological problem that affects motor function like stroke or a spinal cord injury, and the consequence is excess extracellular matrix, which in this case means loads and loads and loads and loads of scar tissue inside outside and all around the affected joint. 

 

0:04:00.9 RW: Collagen fibers are spat out by Myofibroblasts at crazy rates, and they accumulate and stick to nearby structures and pull everything in super tight, and by everything, I mean the joint capsule and cartilage and tendons and ligaments and muscles and all of these tissues around any major synovial joint can get tied up in scar tissue, shoulders, maybe elbows, hips, knees, ankles, and the result, well, as our contributor describes for this young man, loss of range of motion and pain and limited function and pain and disability and pain. Does it ever get better? Maybe, sometimes, but there's a large variation in what experts say is required to treat this once it has taken hold, and we can get a sense of that by what we've heard about this client's experiences, he's been thrown out of doctor's offices and doctors are shunning it and there's very little written about it. 

 

0:05:00.3 RW: For instance, I went to the web page for the National Institute for Arthritis and Musculoskeletal and Skin Diseases, which is usually a decent resource for reliable, if not exactly hot off the presses information about conditions. And I typed Arthrofibrosis into the search field and I got goose egg. I did end up finding some very interesting and useful resources however, and of course, these will be listed in the bibliography of our show notes, and I wanna give a special shout out to the International Arthrofibrosis Association, whose mission is to provide scientifically referenced information about Arthrofibrosis to promote better understanding and better outcomes. 

 

0:05:44.3 RW: This organization was founded by an Australian researcher who developed Arthrofibrosis after a total knee replacement, and she gathered a team of exercise scientists and immunologist and others to gather good information about Arthrofibrosis and to provide resources for patients, the information that's hosted by the IAA does not always align with the common wisdom about what to do for Arthrofibrosis, however, and we'll get to that shortly. But first, let's look at its pathophysiology, which is something on which the experts appear to agree, our contributor described it as an auto-immune disease, and that's probably not quite right, but it's definitely a condition that involves immune system dysregulation. Like auto-immune diseases, it seems to occur more often in females than in males, unlike autoimmune diseases, it does not appear to run in cycles of flare and remission, rather it has a period of activity where all the processes are in high gear and then it appears to stabilize and not progress any further, and it might spontaneously resolve and get better, but probably not. 

 

0:06:57.4 RW: To describe the cellular and cytokine weirdness that seems to lead to arthrofibrosis, I will quote an article hosted by the National Library of Medicine, written by Dr. Kayley Usher, titled "Pathological mechanisms and therapeutic outlooks for arthrofibrosis. And the quote goes like this, "On a cellular level, arthrofibrosis is characterized by upregulated myofibroblast proliferation with reduced apoptosis, adhesions, aggressive synthesis of ECM that can fill and contract joint pouches and tissues, and often heterotrophic ossification. Although ECM is necessary for healing and wound repair, dysregulation of production and degradation leads to pathologic fibrosis." 

 

0:07:45.2 RW: So let's unpack that quote just a little bit. "Upregulated myofibroblast proliferation." Myofibroblasts are the connective tissue cells that spit out new collagen fibers. In arthrofibrosis, they replicate very quickly and they're extremely active. "Reduced apoptosis". That means that those myofibroblasts, which under normal circumstances would produce enough collagen to make a healthy functional scar and then quietly self-destruct, remember apoptosis means "appropriate cell death", but they don't do that, they live on and on and produce more and more and more and more collagen. "Adhesions". Well, we all know what that means. All that collagen is sticking surfaces together. "Aggressive synthesis of ECM". Remember ECM is extra-cellular matrix, which in this context is science-speak for scar tissue, and is being synthesized, made at an accelerated rate by those crazy fibromyoblasts and it doesn't stop. It can fill and contract joint pouches. Yikes. Think about a knee joint filling up with scar tissue. "Heterotrophic ossification" is the development of bone-like material where it doesn't belong. 

 

0:09:03.7 RW: So to sum this up, what we have is over active collagen factories leading to contracted joints, adhesions, and chunks of calcified material, all of which interferes with normal joint function. And the concluding sentence, "although ECM is necessary for healing in wound repair, dysregulation of production and degradation leads to pathologic fibrosis." But what makes those myofibroblasts become upregulated and so busy? The main factor is inflammation. Limiting inflammation and introducing healthy pain-free movement as soon as possible after surgery seems to be among the best ways to limit the risk of arthrofibrosis. And we'll come back to more about treatment and management strategies in a bit. Arthrofibrosis turns out to be a fairly common complication of orthopedic surgery, especially anterior cruciate ligament repairs, which fits the description from our contributor. Some sources suggest that it might develop between 5% to 9% of the time. That's huge. And if more than one ligament is repaired in a single procedure, like if both the posterior and anterior cruciate ligaments are repaired well, then the risk for AF goes up. 

 

0:10:26.8 RW: Other risk factors include being female, being under 18 and having a knee surgery that involves the quadriceps tendon or having a tendon graft. However, knees are not the only place AF develops. It can occur at the hips, the elbows, the ankles. Again, this might be a complication of surgery, but it could also be triggered by an injury or a neuromuscular condition that affects range of motion. One big question I have is whether the thing that we have traditionally called frozen shoulder or adhesive capsulitis is a form of arthrofibrosis. Some resources suggest that it is. But we know that this condition is most common among older women, and then it often fully or nearly fully reverses all on its own, so that the person who has it usually has full function or pretty full function after it all subsides. And this is a process that may take well over a year. 

 

0:11:26.4 RW: The treatment of arthrofibrosis is a little bit controversial. Some orthopedists recommend aggressive physical therapy and stretching, but this might cause further injury, more pain, more inflammation and more, you guessed it, scar tissue. Very severe cases might need surgery to release some of the bound up tissues, and this could be arthroscopic surgery, but all that excess scar tissue can make this procedure prohibitively difficult. But open surgery creates a lot more scar tissue, which is not a plus for a patient already prone to arthrofibrosis, so you can see the problem. Physical therapy, that does not stress the joint or cause more inflammation, is probably the best tack at this point. And some studies are also looking at the use of some very specially targeted anti-inflammatories and putting these in early in the process to try to interrupt fibroblastic activity from the outset. This doesn't seem to leave people with current arthrofibrosis with many options, especially if it's related to an incident that happened quite a while ago. However, all is not completely hopeless. Just as frozen shoulder often resolves, over a course of many months or sometimes up to five years, AF in other locations may follow a similar course. 

 

0:12:48.9 RW: Here's what the International Arthrofibrosis Association offers on prognosis. They say, "Although arthrofibrosis is a relatively common disease that affects between 5% and 15% of people who've had joint surgery or suffered joint trauma, awareness and understanding of the disease remains poor, even among medical and sporting professionals. It's common for professionals treating arthrofibrosis to provide the same therapies as for those who are healing in a healthy way, but this is often a mistake. Specialized approaches are required for treating arthrofibrosis. Perhaps, the most important word to keep in mind is "gentle," particularly in regard to exercise and stretching. Never permit the frustration of slow progress to alter the plan. Never try to force the range of motion or exercise therapy. Everybody progresses at their own pace. If the joint reacts with increased symptoms after therapy, then the plan needs to be altered. Further trauma, including micro-tears from forced stretching, must be avoided." I love that emphasis on gentleness and patience. Can you see yourself and your work being part of this recovery process?  

 

0:14:07.2 RW: So for our contributor, my suggestion is maybe share this podcast with your client and the resources in the bibliography that's attached, and assure him that while his progress may be slow, with gentle and patient work including massage, his knee may not be frozen forever. And now, I have a surprise. When I visited the IAA site, there was a forum for leaving a comment or a question, and I sent a short note of appreciation, letting them know I was doing a podcast on this topic. And the next day, huzza, I had a note from the founder of the IAA, who turns out to be Dr. Kayley Usher, who wrote the original review of this condition that I quoted in our podcast. One thing led to another, and the short version is that Dr. Usher allowed me to interview her for a few minutes to fill in some of the bits of information that I hoped to understand better. And here is our chat. 

 

0:15:07.8 RW: I am thrilled to introduce Dr. Kayley Usher, and I'm going to ask Dr. Usher to talk briefly about who she is and what she does and why I have asked her to join us today. Thank you so much for being with us, Dr. Usher. 

 

0:15:24.5 Dr. Kayley Usher: Thank you Ruth. It's a great honor to be in your podcast. I really appreciate it. I'm an honorary researcher with the University of Western Australia. I have a focus on arthrofibrosis since I developed it myself many, many years ago. That was following a total knee replacement. And with my background in immunology and microbiology, I realized that there was a real lack of understanding of the condition from the perspective of the pathology of it. So I felt that I could bring my expertise to the table and try and increase the understanding of it. 

 

0:16:07.6 RW: I ran into your work in more than one place when I was trying to gather information on arthrofibrosis, and what that tells me is that it's a small community of people who are really studying this with any kind of interest or diligence. Is that your sense as well?  

 

0:16:26.7 DU: Yes, very much so. For a condition that's actually quite widespread and common, there's a real lack of understanding and even knowing what the word means in the community, and that's a real problem. 

 

0:16:40.2 RW: So that actually brings me into my first question, which is that, if arthrofibrosis is a common complication of orthopedic surgery and the stats that I've seen suggest something like 5%-9% for instance of ACL repairs may have this as a complication, that's a lot of cases. 

 

0:17:02.8 DU: It is. 

 

0:17:04.1 RW: And so why do you think we don't hear about this?  

 

0:17:08.0 DU: I think it's a bit of a multi-pronged problem. I think part of it is that there's a culture of not talking about it. And possibly this is because that it can be caused by surgery, and some surgeons might feel they get the blame for it. And many patients are not actually told that they have arthrofibrosis. They're just sent away. And some of the patients are even blamed for it. They're told that they're not working hard enough in rehab. They're non-compliant. It's all their fault. And it's very, very sad when that happens because it's a disease caused by dysregulated healing responses, it's not the patient's fault. 

 

0:17:53.5 RW: You make the case that what call frozen shoulder or adhesive capsulitis is also a form of arthrofibrosis. 

 

0:18:00.7 DU: There are so many names for it out there that everyone thinks these are different things, but they're not. They're all the same underlying pathology. And if we can all come together and talk about it as a single disease, then we can potentially move on from there and learn more. [chuckle] 

 

0:18:19.5 RW: Right. Yeah. Yeah. That's fascinating. Well, and as is true with what we call frozen shoulder, there's this huge disparity in treatment recommendations, and some people talk about force-generated manipulation of the joint. And some people talk about really aggressive stretching, and other people talk about not initiating new inflammation and scar tissue production. Do you have some thoughts about why there's such disparity in treatment recommendations?  

 

0:18:57.9 DU: Arthrofibrosis isn't talked about, and it's not a recognized word. And because of that, there isn't the research background to call upon, and rheumatologists are not brought into the picture when they should be. Because it is a pathology of the body, so rheumatologists should really be the first port of call, if you like, in treating it. It's an overreactive inflammatory response and immune response, and in my view, the word "aggressive" should never be used in the treatment. [chuckle] 

 

0:19:30.3 RW: Right, and I have really highlighted your recommendations around gentleness and patience 'cause it's a very good match for the kind of work I like to promote among my colleagues. What do you think is a realistic expectation? And I'd love to hear if you're willing to share a little bit about your own experience with your knee, what do you think is a realistic expectation for people who have arthrofibrosis in terms of being able to ever return to full or nearly full function?  

 

0:20:02.5 DU: This very much depends on each individual's particular situation, so which joint is affected? Which structures within that joint are affected? And also how long they've had it for. So if they've heard for over a year than the prospect of full function kind of diminishes, if it's in the three months post-op period, there might a pretty good chance of full function returning. In my own situation, I didn't see rheumatologist for after year post-op and that was too long, and the hoffa's fat pad in my knee was badly fibrotic and that's one of the most difficult things to treat effectively. So yeah, for me I have to live with the fact that this is a permanent situation and unless there's some new therapy that comes out new medication and there's always research out there ongoing research that there's a lot of promising things out there. 

 

0:21:05.5 RW: The impression I got was that people are beginning to pay more attention to the inflammatory components and look for medical or pharmaceutical interventions that might be effective if they are instituted early in the process, is that an accurate read?  

 

0:21:25.5 DU: Yes, that's correct. Yeah. So if we can get in early and stop that inflammatory process, that's crucial. And obviously the other aspect of that is not increasing inflammation through aggressive exercise. And for anyone listening, please do not push through the pain. That's often a very, very dangerous approach. 

 

0:21:45.4 RW: Thank you for saying that. And on that note, my last question for you is, besides, "please don't push through the pain", what would you like massage therapists who deal primarily in soft tissues to know about arthrofibrosis?  

 

0:22:05.9 DU: Firstly I think it's very helpful for healthy healing. Massage really helps to increase the blood flow and the lymph drainage, and these are all very important for healthy healing. The only cautions I would bring in is avoid bruising because any amount of blood can stimulate the wound healing response. So that's could be counterproductive. And in the immediate post-operative period, potentially it's best to avoid the actual operated joint until that healing is kind of well underway and work on the more distant muscles to improve that lymph drainage. And [0:22:46.7] ____. 

 

0:22:46.7 RW: If people are educated in Manual Lymph Therapies, then employing that in the post-op stage may also help to reduce the risk of longstanding inflammation. 

 

0:22:57.8 DU: Yes, absolutely. Yes. And I think this is a area that could do a lot more attention. 

 

0:23:01.9 RW: Wonderful. Well, Dr. Usher, I wanna thank you again for spending a few minutes with me. Arthrofibrosis is clearly much more common than we give it credit for, and this could be a way that massage therapists could be extremely helpful to their clients. And so I am delighted to have this opportunity. I'll also say thank you to the contributor of today's, I Have a Client Who, story to give us a chance to bring this to light. Thank you so much. 

 

0:23:34.5 DU: Thank you, Ruth. And can I just say for anyone who would like more information to look at the International Arthrofibrosis Association and we have have an awareness day coming up on the 20th of April to try and promote what arthrofibrosis is and how to treat it. Thank you very much. 

 

0:23:55.1 RW: That's wonderful. And I do have links to the International Arthrofibrosis Association in the show notes for today's broadcast. So We'll... 

 

0:24:05.1 DU: Thank you. 

 

0:24:05.2 RW: Send listeners and their patients there. All right. Thanks again, Dr. Usher, be well. Take care. 

 

0:24:10.5 DU: Thank you Ruth. You too. Bye bye. 

 

0:24:13.1 RW: Hey everybody, thanks for listening to, I Have a Client Who, pathology conversations with Ruth Warner. Remember, you can send me your, I Have a Client Who, stories to, ihaveaclientwho@abmp.com, that's ihaveaclientwho all one word, all lowercase @A-B-M-P.com. I can't wait to see what you send me and I'll see you next time. 

 

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