Seven months have passed since I had revision TKR surgery and movement is afoot (pun intended)!
Within the medical industry itself. Study and use of stem cells as a means to treat health care issues now has a formal name, Regenerative Medicine (see Blog 11), and is one of the fastest growing biomedical industries in the world (Technology and business trends in regenerative medicine, Cecilia Van Cauwenberghe, Frost & Sullivan, USA, November 29, 2017).
Stem cells are being used to manage cardio-pulmonary issues, macular degeneration and perhaps most prominently, joint and spinal problems, suggesting the possible elimination of metal joint implant devices in the next five years (Reenita Das, Forbes, Nov. 6, 2015).
While the author made a very optimistic declaration for the entire and utterly entrenched medical industry of orthopedics, it is very true that consumers can now find and secure stem cell therapies to avoid metal implants (see Blog 11). The same article energetically describes how:
Over 2500 regenerative medical trials are in progress
Approximately five hundred regenerative medical products are currently on the market
Over 5 billion dollars have been invested (worldwide) in regenerative science research and development
Notably, sixty thousand registered and monitored stem cell procedures now occur annually.
This is all good news despite or because of the trauma, pain and life changing demands on patients imposed by the difficult, real, relationship between bone and metal. Gladly, by the time our children need joint repairs, using their own stem cells will be the protocol most advised and (do we dare hope?) insured.
My progress slowly but surely moves forward. After 7 months of daily physical therapy, required rest and pain management, I have graduated to cane-less walking most days. While I keep a colorful collection of canes by my door, I forget to select one of them, now daily, before stepping out. This is a tectonic change for me and one that I celebrated last night when, walking into a busy night flea market, I realized that I did not have my cane. I had completely forgotten about it and traveled by foot, skytrain, taxi and foot again before noting its absence – which stopped me in my tracks. I took another moment to self-congratulate and then made a beeline for a banana chocolate crepe followed by a Singha beer to celebrate. Today, I rest.
A few practices remain the same:
I really cannot endure a walk of more than about 500 meters (about one third of a mile) before my lower leg seizes up. I must rest and for the remainder of the day, that night, the following day and night. This well tested formula (500+ meters = two nights and up to two days of rest) seems pretty consistent and therefore predictable. Consequently, my apartment has become my haven, palace, office and detention center.
I continue to walk with a limp but if I remember to activate my core muscles, stand erect and lift the leg muscles as I walk (a ‘walking meditation”) my stride tends to straightens out.
A few other strategies have helped along the way: I stopped using sugar in my coffee – a goal I never wanted to attempt but weight gain forced me to try. My spirits are up! I am better networked here in Bangkok, our new home. I now regularly participate in interest groups, attend museums, and explore sections of the city I could not touch not too long ago. Tomorrow, my son and I will visit yet another landscaped park to compare its layout to others in the city. Our plausible goal is to see all of the parks within the Bangkok city limits by mid-April . We look forward to meeting that goal.
Ensuring that physical therapy is a part of my everyday routine is critical. When I think of the work I had to do for three months to attain a semblance of mobility immediately after surgery, and then requiring an additional four more months of careful rigor to rid myself of a cane, I shake my head in amazement at all that needs to be done to regain indispensable strength and basic mobility. Physical therapy is here to stay in my life and in its various tailored forms.
In the pool, I spend about 45 minutes in constant motion including laps, and swimming the perimeter of pool with a five pound weight in my suit to demand more from me aerobically and muscularly. Doing at least ten rounds around the pool using all sorts of strokes otherwise unacceptable to this Master’s level swimmer includes the daring dog paddle, modified breast stroke, bicycle and jogging movements, back strokes and any other movement that strikes me but does not strain my knees – all which offer a work out I need and enjoy. In the quiet hours of the early morning the pool is cool, calm and unencumbered with humans. Birds are discussing their issues, the sun is grazing the leaves and bouncing off the water and I am at peace despite also breathing heavily. I end with a series of in-the-water yoga stretches and pulling the legs and arms in opposite directions to give my spine a massage followed by a period of lifeless floating, at one with the world. It is the time of day that I most enjoy and look forward to. Because this activity is inherently beneficial as well as enjoyable, I never think about whether or not to invest in it. I just go – after my cup of coffee and before the rest of the world wakes up.
In contrast, I have an unenthusiastic relationship with our gym and its exercise balls every other day I am not in the pool. My gym regime includes plank poses, large ball manipulations with twists, hip lifts and holds and plenty of stretching in between. If it were not for the pool to jump into at the end of my gym time, my PT regime would be a bitter pill to swallow since the workout itself is, quite honestly, hard.
At my age (62) and after birthing two children, I have not managed to lose weight nor the masses of noticeable material clinging to where fashionable clothing will not tolerate. Clearly getting rid of at least ten pounds would help my joints and will be my next goal now that I can walk – more than less. Less crepes and beer and more of everything else I can do physically is the plan. What is yours? Keep our blogs readers posted!
My brother Geoff and I are now in our early 60’s and have had the same knee problems born from years of active use. We both have had to manage bouts of knee repair starting with torn meniscus, floating cartilage and eventually, degrees of osteoarthritis. Geoff, however, avoided a total knee replacement (TKR) by investing himself in ‘Advanced Orthobiologics’ or ‘Regenerative Medicine’ by using his own adult stem cells to repair. I, on the other hand and starting long before adult stem cell therapies were accessible, took the now well worn path leading to a total knee replacement, as the rest of my blog site details.
What are the differences between approaches? Many.
Which approach is better? There is no doubt that there is no comparison. Use of adult stem cells to manage joint damage is the preferred route to take, if your joint passes an applicability exam offered by orthopedic surgeons certified in Advanced Orthobiologics or Regenerative Medicine.
I am now into my sixth month recuperating from a revision TKR and recently progressed to walking about 100 meters without needing a cane. My brother, on the other hand, one week after his second stem cell therapy in 6 years, returned to wind surfing, cross country skiing, and biking, among other activities. He plans to participate again in the American Birkebeiner cross country ski race this winter and will once again return to the Columbia River Gorge in Colorado to leap and skim waves with his windsurfer, knees bent, taking all the shocks and torques my body cringes to think about. The benefits of regenerative medicine are very real starting and ending with less or no pain, a more active quality of life, more natural resources to draw from for a longer period of your adult life, no invasive surgical procedures and thus total avoidance of any risks associated with TKR surgery.
So, what is it like to actually experience adult stem cell therapy? Let my brother, the real author of this article, tell you his story.
What was happening to your knee at the time that you first sought orthopedic attention?
I first tore my right lateral meniscus in the early 80’s playing tennis on a freshly refinished court that had a surface like 60 grit sand paper. The pain and swelling was pretty immediate. I recall limping around for a few days, maybe weeks before seeing a sports medicine doctor. Their recommendation was to avoid surgery until the injury interfered with my quality of life. For the next 6 months or so I tried running and playing tennis only to realize my mileage and agility were diminishing and the pain was increasing.
What kind and how many doctors did you visit?
Over the course of the next 20 years I had 2 more arthroscopic surgeries for torn meniscus, one each for both knees. I recall seeking the opinion of a couple of orthopedic surgeons before settling on a surgeon who was the team doctor for many professional sports teams in Minnesota and traveled with the U.S. Winter Olympics team to Japan. Both surgeries were done by this same surgeon.
How did you feel about your (mobility and life-style) future with each diagnosis/prognosis that was made?
After the first surgery my knee did not feel quite aligned for about a year…I think persistent running and tennis help pound or grind it into submission…Today, I would choose a softer approach to aligning one’s body. The recovery from the second surgery was much quicker due in part to a better surgeon and improved techniques. My mobility was pretty good for roughly 10 years. When I reached age 45 my legs started springing apart. I was always in some sort of recovery from pulled leg muscles. According to my current Osteopath, I did not have enough body work done for the level of activity I was doing. My body structure was out of alignment and my soft tissues were like dried out leather. To top it off, I tore a meniscus again and had a joint mouse (cartilage chip) floating around that would stop me in my tracks if it lodged in the joint or under my knee cap. I eventually had to have a third surgery to remove cartilage chip and clean up the meniscus tear.
What or who led you to look into stem cell therapy?
Ms. Deanne Aronson, Osteopath and certified Acupuncturist. She is also my fiancé of 18 years.
What features to stem cell therapy appealed to you?
It’s regenerative rather than invasive and extractive. It uses your own cells to assist your body in healing itself…no machinery. Minimal pain throughout the procedure and recovery. It is a small scale personal outpatient treatment alternative to those more impersonal complex procedures and protocols offered through the medical industrial complex. It makes the complex simple.
Tell us about your first stem cell treatment.
Six years ago torn meniscus, a torn ACL and budding osteoarthritis compelled me to find a certified stem cell orthopedic practice. I found that practice in Colorado at the Regenexx clinic, the first to use adult stem cells for orthopedic injuries (www.regenexx.com/our-approach). I flew to Colorado, rented a hotel room and began the week long process. In those days, it took about 5 days for the complete treatment, including initial prolotherapy, blood draws, processing, and then stem cell and PRP injections. I was on a strict recovery program for 6 weeks which included immobilizing my knee with a brace and slowly increasing activity. The Doctor (Schultz) was only able to harvest enough stem cells at the time to treat my torn ACL and meniscus. There were not enough stem cells to treat the budding arthritis on the medial side of my knee. This is the only spot that had presented any concern since the procedure was completed. My knee for the most part was doing fine up to about 2 months ago when it clearly had degenerated to the point of prompting the second treatment. Besides windsurfing, I had roller skied and biked far too much and these activities set the arthritis on fire.
How has the procedure changed since your first treatment?
The procedure has changed significantly over the last 6 years. Apparently they have refined the bone marrow extraction methods from the hip bones and have been able to harvest several times the amount of stem cells than were possible in the past.
What features of stem cell therapy are difficult?
Not much…if you like needles. There is a lot of poking around involved with blood draws, prolotherapy, bone marrow extractions, prp and stem cell injections. However, I remember being a bit anxious with my first treatment in anticipation of the bone marrow extraction. In fact, Dr. Schultz paused the procedure and asked why my pulse was so high. I told him his literature talks about bone marrow extractions with no indication of the pain level one may experience. I had conjured up in my head that it would be on a par with bone cancer treatments or spinal taps. I was happy to find out the pain level is not much more than a typical shot. Their literature has since been revised.
Also, I received 3 rounds or approximately 10 injections each for prolotherapy treatments in Minneapolis prior to going to Boulder for the stem cell treatments. This was torture…and unnecessary. The local doctor that performed the treatment was pretty unsophisticated and did not use imagery devices to guide the horse needles into my knee…he was flying blind.
A good doctor will utilize fluoroscopy and/or ultrasound imagery in real time to guide injections into the joint capsule. If done well, the pain level isn’t much more than acupuncture. Doctors may offer a sedative to relieve anxious patients. However, I found just breathing deep and going to my happy place works just fine.
What are the features of a knee replacement that are difficult for you to accept?
I would consider knee replacement for those people whose joints are damaged beyond the point where stem cell treatments are a reasonable solution. I have also experienced firsthand the profit motives of the orthopedic industrial complex and doctors who reject the idea of stem cell treatments and prematurely recommend knee replacement. As you know, a book could be written about the hideous lobbying by our western medical system and their efforts to obstruct FDA approval of stem cell treatments and detour any advancement of alternative medical treatments that would cut into profits.
Under what conditions would you urge people to have a knee replacement?
When they have exhausted all other alternatives.
What advice would you give people with acute knee pain?
If you go to a standard orthopedic surgeon they will figure out a way to use a knife to fix your pain. Instead, begin with the basics and consult professionals that specialize in noninvasive biomechanical and structural body work such as osteopaths, acupuncturists, chiropractors, or rolfers, etc. These treatments should be the first line of defense… structure governs function.
How would you advise people who want stem cell therapy but cannot afford it?
Good question. Since adult stem cell treatments are not yet approved by the FDA, the costs are typically out of pocket. I was fortunate enough to have an Health Savings Account (HSA) and used pretax dollars to pay for my procedures. I also tried to bundle medical and dental expenses in a year in order to reach the threshold for income tax deductions.
I would also consult with providers to see if they would accept installment payments for treatments.
Are there any elements of stem cell therapy that need improvement? (method of care, location, cost, unsure outcomes, chronic pain, lack of easy access…etc) ?
Yes. Approval by the FDA so the treatments can be paid for through insurance.
Six years ago, stem cell therapy was not that common. It seems to me that it took some courage to have agreed to this kind of therapy. What gave you the courage to fly away from your home, rent a hotel room and subject yourself to this newish form of treatment?
Deanne Aronson. If it was not for my forward thinking insightful partner I would not have known about stem cell treatments. I also knew that if I had another arthroscopic surgery most of my remaining meniscus would be removed and I would be heading toward full knee replacement within a few years. Full knee replacement would also limit certain activities that I was not willing to eliminate from my life quite yet. I also realized that I was at an age when I would probably outlive the initial artificial knee and have to have that replaced in the future as well.
The more we researched stem cell therapy the more I was intrigued with the possibilities of regenerative medicine and was willing to give it a try.
What personal traits are required of a person to have stem cell therapy?
A heartbeat. Six years ago at 58 years of age, I was considered a marginal candidate. The thought was that the older you are the fewer stem cells you produce. It is my understanding that this notion has been disproved. In fact, Deanne Aronson referred an 86 year old patient to a certified Stem Cell therapist, (Dr. Hanson) and is now receiving stem cell treatments. Apparently, good nutrition plays a larger role in the quantity and health of your stem cells than age.
What personal traits are required of a person to heal from stem cell therapy and protect their knees from further damage?
Patience, a positive attitude and an understanding of the body’s ability to heal with proper nutrition, exercise, and biomechanics.
What physical activities are you doing now?
Windsurfing, cycling, roller skiing, downhill skiing and freestyle skate skiing. Over the course of the last 6 years I have done over ten, 50 plus kilometer skate ski events and competitions including the American Birkebeiner and the Minneapolis Loppet.
How long will your second stem cell injection last?
We will have to wait and see. The first treatment (6 years ago) never degenerated.
Do you anticipate further degradation of your knee?
Well, through the process of the second treatment we discovered I have a budding bone spur located below the medial side of my knee cap. This apparently cannot be cured by stem cells. I am hoping to keep the spur at bay through biomechanical therapies.
Do you anticipate possibly needing a metal knee replacement sometime in your future?
I hope that regenerative medicine will continue to advance to the point that I can avoid metal knee replacements.
If so, will you allow it to happen?
I may have no other choice if I have exhausted all other possibilities. Hopefully the metal knee replacement industry will also make some advancements to minimize risk and improve outcomes.
If you have to have a TKR, what options will you foresee having?
Learning how to embrace a more sedentary lifestyle.
END of interview.
Am I jealous of my brother? No, though envy slides in occasionally. I am happy for his sustained level of activity. Even if he chose to live a more sedentary lifestyle I would be happy for his absence of chronic pain. But, more so, I am haunted. Something is wrong, terribly wrong, in the medical field of Orthopedics when reliance on highly invasive partial and total metal implants are on the rise, with all of their associated risks (Blog 7), while the far less invasive regenerative medical therapies remains side-lined, stubbornly out of reach by insurance companies and held at a long arm’s reach by the US Food and Drug Administration (FDA) for reasons that remain persistently suspect. While a future blog will elaborate on this declaration, I encourage you to add these below information sites to your research list. When it comes to managing our health, researching our options can be only a click away for a less complicated, less painful, lifetime.
Today marks the fifth month after my recent revision TKR surgery (and ninth surgery on my left knee) and I am feeling very, very hopeful. Today, auspiciously, I also forgot to take my walking cane with me to the local market about 92 meters to and from my apartment. So, I walked home with two small bags of groceries and absolutely no need for a cane. I was so euphoric that I wrote to my surgeon back in Milan, Italy and told him all about this new phase of self-sufficiency that I am clearly entering.
But, despite my progress, I remain resolute not to assume I can return now to swimming with flippers and swiftly walking long distances or dodging traffic and deftly sidestepping potholes. The key to my longevity with this revised TKR is to adapt a more sedentary lifestyle, punctuated with daily exercises and occasional visits with physical therapists (PTs). In fact, my success lies with the PTs as much as with my own discipline to follow their directives. Without PTs, I might be able to heal by relying on all the exercises I acquired over the years. But with good PTs comes the coaching, the reality checks, and the encouragement needed for the long haul. And without a doubt, my revision TKR has been a long haul.
Yesterday, I spent 60 minutes in physical therapy doing a range of seemingly simple things: walking up and down a short set of stairs and then a set of deep stairs; standing for minutes at a time on an incline in order to achieve an extreme stretch of my calf muscles; ‘walking consciously’ by activating as many of my core muscles as possible; standing on my toes ( 3 sets of 5) and then the hardest one, stepping forward on one foot, while tapping the opposite foot forward and backward (5 times each side) before taking another step. To top off this seemingly benign routine, I rested while having a painless 15 minute ultrasound treatment followed by 20 minutes of a hot-packed bed rest. Yet, I limped out of the clinic in more pain than when I walked in. Even more odd was the fact that I felt light and happy, secure in knowing that I was once again moving forward in healing and closer to a cane free existence.
Every time I invest in exercise I also invest in proving the adage, ‘Two steps forward, one back’. Every week I witness improvements in my strength, my balance, my stamina and my capacity to function confidently. But, with a revised TKR I could not do it alone. I need a good PT.
I deeply appreciate a good PT. In fact, good PTs are so important to ones’ recovery that they can quickly earn the possessive title of ‘My PT’. If a PT does not earn my trust or regard, I find myself using an article dubbing them ‘The PT’ or ‘A PT’. Over the years, the distinction between ‘My PT’ and ‘The PT’ / ‘A PT’ has made the difference between healing and thriving or just getting by.
What makes for a good PT? I have come to believe that a good PT knows their science, first and foremost. They punctuate this knowledge with empathy for the physical and emotional journey one takes after an injury and they convey that empathy easily, authentically and directly. They have command of your repair program. Yet, they are also flexible, patient and willing to adjusting the specific program to your needs based on the inevitable daily or weekly issues that can interrupt it. They know the subtle differences between coaching and teaching and between patronizing and encouraging the patient to push themselves as best they can. For example, today I actually could walk further and longer than last week. But, I lost stamina half way through the toe tapping exercise. So ‘My PT’, Pratayana quickly steered me back to the bench where I rested and where she substituted the exercise for another. While I still walked out sore, I was confident that I was improving while not imposing unnecessary damage on the new joint.
In contrast, back in the USA when I was healing from my first TKR, the therapist goaded me to finish every exercise no matter how painful it was because we needed to ‘stay with the program’. She also insisted that she bend my knee even though I had been doing very well on my own with the use of a large ball to help me with this fundamental range-of-motion exercise. Insisting that I lay on my stomach while she bent my knee, she clearly also insisted on being the one in control. It probably didn’t help that I had the peculiar need to see my knee bend in order to bend it to its fullest range, and preferably with that ball right in front of me. While I suggested using the ball she insisted on her own approach. Sure enough, she also eventually and finally gave up trying to improve my range of motion and announced that “I can do nothing else for you! I don’t know what else I can do.” I returned to my ball, at home, and I did finish my thrice weekly program, with her, though often enough in tears. I was not only an object for the therapist to manipulate, but I was also responsible for upholding her program, regardless of my physical state while doing it. I often left that clinic swearing, and swearing that I would never return, no matter how many patronizing “Good Job!” judgments were also lobbed my way. In those days, I did not have the courage to definitively speak up or to leave. Now, age and experience has its privileges. Today, I would do both and without a doubt. A good therapist conveys a desire to partner with you, controls the impulse to judge and has the knowledge base to try different approaches to the problem.
In turn, a good patient will team up with a therapist and communicate clearly and honestly what works, what doesn’t, and what aches from what pains.
A therapist becomes a good therapist if they are also professionally allowed to design and manage the patient’s specific repair program. But this is not always the case wherever one lives. In Milan, Italy during my ten-day hospital stay following the revision surgery, I had a very decent team of therapists who adhered to a generic tried and true therapy program, but they had to report to the surgeons and could not apply techniques without first consulting them. After I returned home to Rome I teamed up with Angela who did her best within the limited range of responsibility prescribed to her by the surgeon. But she was visibly frustrated when she could not move forward from incision management and apply additional techniques because she did not have written permission from the surgeon back in Milan. When I finally intervened and asked the surgeon for permission to use Angela’s recommended program, he said no, I don’t need it, just carry on with incision management. Granted the incision was almost 9 inches long and needed management but the total joint and core muscle structure also needed attention (see blog 8).
The fact is surgeons do not have time to ‘know it all’, both of their own surgical studies and of physical therapy. Most physical therapists in Bangkok and in the States are in charge of determining the therapy program of each patient. Their pride and skills show up in the programs they design and implement to meet patient needs. And, that program is also subject to periodic team reviews assuring both the therapist and the patient that they are on the right track for full recovery.
Sometimes, the inabilities of a physical therapist have an effect on the clinic and on the surgeon in charge. Again in Rome, following my first TKR on the right knee, I was briefly in the hands of a very young and inexperienced physical therapist who clearly did not know the first thing about managing a total knee replacement. He was timid, applied inappropriate exercises to the fresh implant and paid no attention to incision management. And, unfortunately, he was the only therapist in the surgeon’s clinic. After I returned home from my first visit with him, I quickly set up my own gym in the living room, secured a stationary bicycle for daily use in the backyard and commenced with my own set of exercises – and sought another therapist with whom to check- in occasionally. I also informed the surgeon of my actions. I am sure that I was not the only patient to communicate concerns about that particular PT, but I do take as evidence of the need for open communications the fact that the surgeon, a few years later, hired a second therapist who became the clinic’s Director of PT. Kudos to the surgeon for eventually waking up.
A really good therapy clinic will provide handouts of the exercises they expect you to practice at home. This is an empowering element to any decent therapeutic program – reinforcing information back to the client for home-based use. Yet, surprisingly this form of education is not practiced by every clinic or hospital. Here, in Bangkok at the esteemed Bumrungrad Hospital, surprisingly they do not offer handouts. Instead, I go to each session armed with paper and pen to write down what I have been doing. Back at the Galeazzi Institute in Milan, the head therapist sent me back home with several pages of illustrated handouts to follow. Though back in Rome I had to ask for a written list from my gym and pool therapists. But after two and one half months of waiting for it, I gave up. Back in America on the other hand, I was able to form a thick file of illustrated handouts based on all that the PTs gave me. It was and is part and parcel of their service. That file of handouts became the guidebook I referred to years later when I ran away from the inexperienced therapist in Rome. While I did not appreciate the lack of flexibility by my American therapist managing my first TKR, I do appreciate their orientation towards patient education. All those handouts reinforce the skills learned as well as the responsibility to apply what has been learned.
Somewhere in-between these differing PT practices lies the same intention among good PTs world-wide: to help the patient recover and become physically self-sufficient. Good PTs have figured out the balancing act required between helping and hindering and between pushing and pulling a patient towards self-sufficiency. Ultimately, a good therapist will say, “It’s up to you. Practice, rest and then practice again. I willingly serve as your guide until you do not need me anymore.”
I have less than a month left of physical therapy before I am on my own. I am confident that ‘My PTs’ will let me go without my feeling concern for losing them.
Wanting to know what the author of a blog sermonizing about knee repair has experienced in her life is a very fair question. And one asked by a reader of this blog. Knowing other readers may feel unmotivated to read a stranger’s chronology of health care events, the below article is written to try to painlessly guide you through my orthopedic life leading to my current juncture: two total knee replacements (TKRs), one revised knee (RTKR) and several interventions in between.
My orthopedic story started when I was in eighth grade and living near Minneapolis, Minnesota (1971). I tore the cartilage in my left knee while practicing for a hoped for spot on the cheerleading squad. Since those were the days before arthroscopy surgery was available (the less invasive/small rod insertion approach to knee repair), I underwent two general surgeries over the course of a year to remove torn and floating pieces of cartilage. The scarring that resulted told the first of several stories. Each story left a scar, lessons learned and plenty of memories. For example, during the second surgery, the surgeon forgot the x rays and had to have me wheeled out of the operating theater for new xrays and during that same surgery he thought it best to also scrape all the cartilage off my young kneecap. Still those surgeries did not stop me from using my knee without restrictions. Until my early twenties, I went downhill skiing, cross country skiing, dancing and biking (no-handed) on my way to and from the local university and from work – a county hospital where I served as a nurse’s aide and where bounding up and down four flights of stairs delivering lab results was part and parcel of my work. It was also fun.
Yet, by the time I was twenty–two (1978), this unrestricted lifestyle ensured that my knee turned osteoarthritic. My knee ached and swelled. I found myself arriving late to college classes if, between them, I needed to walk a great deal. The orthopedic doctors I consulted warned me that osteoarthritis would not improve unless my lifestyle adjusted or I would find myself wheelchair bound before I was twenty-five. What they did not know, nor did I until I watched myself respond to their declaration of ‘arthritis’ in slow shocked time, was that the ghost of my grandmother settled into my perception about the diagnosis and its subsequent management. I absorbed my grandmother’s approach to severe rheumatoid and osteoarthritis having witnessed it first hand while growing up: she walked with a cane until she needed a walker which led to a wheelchair and eventually to her bed where she stayed bound for seven years before her death. With my prognosis, I pictured Grandmother, and thinking I was being proactive, picked up a cane as my daily tool to slowly walk my way to classes on the University of Minnesota campus. I parked my bike in my parent’s garage and let my pool pass at the gym lapse. I also announced to my co-workers at the hospital that I would no longer run labs and I arranged to shift to a ward secretary position where I could sit my way through to each pay day. I also slowly walked my way into depression. After all, isn’t that what can and will most likely happen when a person is forced to change their life against their will and when they see no hope for a reasonable solution to a problem?
Into this period of my life came an unlikely source of hope and motivation: a university professor of Anthropology by the name of Dr. Harvey Sarles. I was a student in several of his classes and had quickly learned after a few in-class disagreements, to keep him at arm’s length. However, distance was not possible since I was required to meet with him about a project. At the appointed time I knocked on his office door, cane in hand, to attend the meeting. Looking back, it is not hard to recognize that he had given some thought to my adopted cane and carefully steered the conversation from the project to the appearance of the cane in his class. He asked me why I was using it and so I commenced with the chronology of events that led me to needing it. I found myself quietly but earnestly listening for guidance and any nuggets of insight from his outside perspective. Instead, he changed my life. I cannot recall all that he said, but he did convey these basic messages:
1) We are what we think we are, but we can change to be what we want to be. You are not your grandmother. Who do you want to be?
2) Doctors are not the final gate-keepers of medical information. Research all that you can about your condition and own it. Seek horizontal, not vertical relationships with your doctors.
3) And, the unforgettable final and clear message, “Get rid of the cane. That one belongs to your grandmother”.
Even now, years later, I am still touched by his gruff but thoughtful care. I hobbled out of his office feeling confused but energized, struggling to absorb a new paradigm, a new way of looking at many things in my life. I did retire the cane and I began looking for a new doctor. I also kept my activity levels tame. I was still late to class if long walks were involved. Pain was still my companion, but I did not feel like its slave. I got to work empowering myself with whatever I could find related to arthritis. I also, eventually, graduated with a BA in Medical Anthropology.
During this time of hope, I never let myself stray too far from the views of orthopedic doctors since I truly believed they were the only kind of doctors suitably trained to deal with bones and arthritis. My search for a ‘horizontal’ relationship with an orthopedic doctor led to Dr. David A. Fischer (1978), who specialized in arthroscopy and the emerging field of Sports Medicine. Dr. Fischer had recently introduced both new approaches to the Twin Cities and was considered the city’s expert on knees in general. So began a six year doctor – patient relationship that included one arthroscopy, followed by a patella repositioning procedure requiring a bone graft from my hip, three screws and a nice long scar, and a scar tissue breaking session under general anesthesia. But, unlike my reaction to the diagnosis of ‘arthritis’, I embraced my newly restructured knee situation with vigor and steered my six-month post-surgery repair time towards returning to some semblance of an active life.
In those days the subject of total knee replacement or TKR never came up to me. I thought I had achieved full and permanent joint health. Sports medicine personnel were not inclined to tell young people to stop their activities so I returned to biking, long walks and yoga. I also lugged a full knapsack through Europe for another six months. Thanks to Dr. Fischer, who advocated on my behalf, I was eventually accepted into a demanding Peace Corps assignment in a particularly remote and isolated area of the Philippines. There I squatted for two years among members of the T’Boli community of Lemsnolon. I comfortably climbed hillsides, owned a horse for local transportation, climbed up and down from my stilted bamboo hut and walked great distances.
I returned to the States and pursued professional work, married and had two children. We eventually settled in the Washington DC area (2000, 43 years old). Until then and since my last surgery with Dr Fisher, my left knee orthopedic incidences included very infrequent moments of catching and locking and one dislocated left kneecap (circle dancing during graduate school. I ruined the party). I rebounded from those incidences with physical therapy and rest. Over time the incidences included grinding pain and swelling…the usual symptoms of a distressed joint. By this time, orthopedic science had progressed in leaps and bounds with TKR procedures becoming commonplace. Dr. Ubelhardt, my then orthopedic doctor of choice in Washington DC and with whom I would occasionally check in, began to press me to accept the need for a total knee replacement. He believed I would be happy with the new removable ‘pop in and pop out cartilage’ TKR model. I balked. I had studied them and their lifespan. Psychologically I could not embrace the fact that my bones would be deconstructed, once again, and my energy channels would be permanently interrupted by two walls of metal. His enthusiasm always met with my mortification, and I would leave his office determined to avoid that final solution. I continued to take matters into my own hands. I pursued acupuncture for pain, simple yoga for muscle strengthening and stretching and physical therapy exercises for muscle strengthening and alignment issues. But bone on bone does heal by itself. By the time he gave me one more pitch for a knee replacement (2004, 47 years old) I was at the point when my knee was controlling my lifestyle more that I wanted it to. In fact, one day a hill got in my way and the option of a TKR suddenly felt possible, even necessary. My two boys and I were walking back home from a nearby pool that sat at the base of a hill and I knew that I could not walk up it this time. I returned to Dr. Ubelhardt and told him I was ready for a TKR. He assured me that I would not regret this decision and we commenced securing a surgery date (September, 2004). I was surprised by the amount of relief I felt in having made the decision to replace my joint. I found myself preparing for the surgery with the exuberance of someone packing for a new adventure: positive energy, hope and confidence that this would be the right thing to do went into my overnight hospital bag. My eyes were wide open about the demands of physical therapy and of the repair time at home. My family was also set and ready to support my healing. Thankfully, my sister Deb also flew in to help out. We both did not know at that time that her assistance would be the first of three times she would be asked to help post-operatively.
Though healing from the TKR was an unusually long and torturous six-month intensive process, I was, overall, a lucky beneficiary of Dr. U’s construction work. I’ll only footnote an unfortunate episode when, two years later, I slipped on a thin veil of water and fractured the kneecap on the same TKR, requiring the cap to be wired shut, crutches for four months and half a year of physical therapy. Aside from that, I enjoy 14 years of an active personal and professional life. Dancing and snow sports were eliminated entirely. Instead, I happily swam my way to a Master’s level, hiked gentle trails and walked a great deal wherever we lived.
My right knee had been working exceptionally hard over the years and rarely complained. But about ten years after the first TKR, signs of similar decay showed up on my otherwise sturdy right knee. While I had by then learned of adult stem cell therapy, I was not be able to afford to travel to the United States, stay in a hotel and receive its benefits. Instead, I subjected myself to another TKR (2014, 58 years old) buoyed by the overall positive experience I had with my left knee.
Relationships, no matter how they appear, are rarely static. Underneath the surface of the left TKR, standard daily activity was slowly but surely forcing natural debris, produced by friction between metal on bone and plastic, to float and settle between the structures, loosening the metal from the bones, dissolving portions of the remaining ligaments and disrupting my life with episodes of giving out, catching, and swelling, or ‘failing’ in orthopedic parlance. Finally, my left knee had enough and gave out one excruciating morning in March, 2018, never returning to normal. That July, I had a Revised TKR complete with a longer, heavier set of metal devices into bones that were also freshly trimmed to hold the new joint. My particular recovery from this surgery continues and has been exceptionally painful, especially during the first five months – and complicated by also moving to another country. The probable need to repeat a Revised TKR on my other knee in due time is a thought that hovers and haunts, but I try to keep it at a distance.
I am no longer in my twenties or late forties. Clearly, this 62 year old body needs more time to recover and more assistance than before. Still, I am forming another revised life with this new knee, one that maximizes isometric exercises, weight lifting and swimming while minimizing any walking whatsoever. I enjoy pursuing interesting stationary activities such as writing, reading, photography and bookmaking. Political punditry from my armchair is fast becoming a role I play in the home and with an interest group here in Bangkok.
In reality, finally adjusting to a more stationary lifestyle has taken all of my life to achieve. And though this kind of adjustment is still not easy to accept, it is easier than it would have been if I were any younger.
So, there you have it. My orthopedic story in less than 7 pages! Lessons I learned along the way:
Knowing your diagnosis by its name does not mean you share everything related to it. Know yourself and you can truly heal yourself holistically. Taking time to understand how and why you react to your diagnosis/prognosis as you do helps build your arsenal for healing the joint and the full person it affects.
Bodies speak to us in their own and varied languages. Stewarding our bodies requires us to learn its languages in order for it to help us heal.
Finances are often a key issue in ones’ healing, especially if pursuing uninsured therapies. Consider tapping personal fundraising options including online ‘crowd funding’ sites and homegrown fundraising dinners. People want to help and will if asked. I wish I had.
Bodies are not easily replaceable nor painless if they are replaced. No matter what professionals say, metal and glue in bones, like screws in wood eventually deteriorate. Deterioration hurts. Entering a marathon (Brooke Shields, 2018, Florida) after a knee replacement is just plain…unwise. Youthful energy and ability to heal has its benefits and its consequences but striving to return to our previous activity level after a joint changing surgery is not always a sign of success. Returning to ‘Go!” is not respectful of the stress that surgery has on the body over time and often sheds a dim light on the person’ s inability to adapt, to learn, and to mature as a steward of his or her body.
Shop for medical professionals who try to understand the above even though they work within their own constraints, defined in part by insurance requirements and standardized prognoses and surgical procedures.
Adventure differently. Use your creativity and venture into sedentary activities you have only wondered about. And then, when you have to or want to ‘go!’ go wisely: walk less, be driven more. Wheelchairs allow you to go further, longer. Canes come in crazy, coordinating designs. “Go” where you have not gone before using different strategies, fueled by the power of knowing that you are protecting yourself for a longer, and equally interesting, future.
It is no secret that I believe it is critical to ones’ overall health and safety to avoid surgical intrusions into the knee to begin with. Intrusions include those “Quick and easy”, “Simple”, “Just a cleaning” surgical strategies that require incisions and insertions of metal ranging from exploratory arthroscopies to partial knee, total knee and eventually, revision knee replacements. Successfully avoiding a knee replacement until it is absolutely your last recourse is worth any effort and energy required.
“Easier said than done when you have knee pain!” you may understandably reply. True, if every step or two you take leaves you wincing then something is wrong and something needs to be done. My last blog (#7) discussed the need to review all options to ensure that you have a fair and decent diagnosis of your pain before making potentially life-changing decisions. But, what do you do in the meantime, before, during and after a decision?Invest your time in building up and maintaining your core muscles, or CMs. I would also add-in calf and ankle muscle strengthening exercises for full-measure.
The core muscle group includes all muscles in your back, abdomen, hips and upper thighs. They enable you to balance, to remain stable or resume stability after a twist, a leaning, or a fall. Core muscles support and stabilize the spine while also enabling the shoulder, spine, pelvic, hip and knee joints to fulfill their duties, and usually with less pain (among others: Journal of Orthopedic and Sports Physical Medicine, www.jospt.org/doi/full/10.2519/jospt.2018.7365).
By their large group sizes, CMs offer the illusion of leading us to believe that they are in decent, if not excellent shape. They continue holding us up, keeping us walking, allowing us to lift and twist. Aqua gym, carrying groceries while closing the car door, and lifting the grandchildren seem to offer few or no problems. Hmmm…Knee pain has a way of seducing our minds, as well as our CMs, into believing they are strong when, in fact everyday that they are not specifically exercised their strength diminishes. If you suffer knee pain and naturally reduce your activity level but do not maintain specific CM exercises, you will soon learn that these diminished muscles contribute to your knee pain and affect knee rehabilitation, especially after a surgical intervention. This fact became painfully clear to me when I was ordered to lift my leg after knee revision surgery. For three days, I not only struggled with this simple exercise, I strained a groin muscle trying to activate my thigh muscles and then lift my leg. I had been protecting my knee from pain for so long that I neglected the rest of my body, and especially my core muscles. Better to keep your CMs fit and ready for anything than to allow them to rest along with your painful joint. Like throwing the babe out with the bathwater, too much is at stake and too much is lost by ignoring this vital group of protectors when you have specific knee joint pain.
Simple Quick CM check
Lay on a firm surface. Bend one knee and place that foot on the surface next to your other straightened knee. Keeping your feet 90 degrees from your ankle, lift the straight leg about 30 degrees and hold it for ten seconds. As you lift pull your navel back towards your spine, Slowly bring the leg down all the way to the floor. Repeat ten times. If your thigh muscles begin to shake, if your lower back begins to ache, if your stomach muscles feel the strain, then you know more attention to your CMs is required.
Better to know now than later so you can do something about it.
I have been relearning over the course of these past nine months that building up and maintaining my core is what allows me to walk, and then to walk evenly. Core muscles have ensured that my thigh muscles can lift and hold my leg, bend my knee and bear weight at different angles. Core muscles compensate when the joint is loose, offering balance and leverage. My tendency to fear being jostled or pushed, actually tripping, or worst of all, falling (Blog 4) has decreased the more I have increased time building my core muscles. Four months after my knee revision surgery, I have actually begun forgetting my cane occasionally since my CMs are – now- doing their job. Twice this week, I had to walk back to get my cane that, for so long, was an extension of my arm.
Many core muscle exercises are offered online and at your local gyms, YM/WCA’s etc. Your physical therapist will certainly be able to show you a collection of exercises tailored to your particular therapeutic needs. The investment needed to get that kind of advice, and the discipline you will need to maintain your exercise program will not let you down. Without trying to be cute, ‘get a leg’ up on self care by paying attention to your CMs. Doing so will bring a certain kind of agility, strength and physical confidence that can make the difference between suffering and repairing. Slowly but surely.
Back in the early 1970’s, I recall Mr. Keever, a robust, good old family friend sitting in the passenger seat of his parked pick-up truck in our driveway. His wife was inside having a quick catch-up coffee with my mother. When I went out to say hello to him, I found him uncharacteristically leaning on the dashboard close to tears. He pointed to his knees, mumbled “Knee replacements” and added that he was in too much pain to join us. He waved me away. “Wow!” I said to myself. “I hope I never have to have that!”
In fact, in 2003 when I was 47 years old, memories of Mr. Keever came back to me when I was struggling with chronic knee pain. My then tried and trusted orthopedic doctor, Dr. U. cavalierly declared after my umpteenth visit to him: I really wish you would just allow yourself to have a total knee replacement (TKR). They are easy! We implant the metal and the plastic cartilage. When you wear out the plastic, we just pop them out and pop in another set! Admittedly, his confidence and that last line sold me. I later learned I was one of his first TKR patients. He needed the experience as much as I needed a resolution my pain.
Fast forward to early spring, 2018 when my orthopedic surgeon, Dr. B. broke the news to me that ‘popping in and out’ a set of plastic discs was not possible, that I had been fed the wrong information. Instead he enthusiastically described a revision procedure calendar: Yes, there are risks, but let’s assume the (first) revision will last ten years. You will be 72 by that time. You can have another revision then. In fact, you will still have time for another after that assuming you are…you know, still here (alive)!
Deciding to have a total knee replacement and then a total knee revision is more complicated than that and should be more thoughtfully decided – although current and projected numbers suggest otherwise.
TKR AND TKR REVISIONS STATS. THEY MAY SURPRISE YOU.
Various sources have published statistics on long-term primary and revision rates for TKRs. Sources I have found useful over time include:
The Total Knee Replacement (TKR) procedure, in the USA, was developed in the 1970s and then disseminated across referral centers and then community hospitals in the 1980s and 1990s. By 2014, TKR utilization exceeded 650,000 cases annually in the US and many more worldwide (Katz JN, Editorial, Arthritis Rheumatol. 2014 Aug;66(8):1979-81. doi: 10.1002/art.38688).
Healthline conducts their own surveys using Medicare and private pay records as well as data from the U.S Department of Health and Human Services Agency for Healthcare Research and Quality (AHRRQ). They also rely on meta-analyses of worldwide joint registry databases. Healthline data indicates that growth in the use of TKRs has occurred primarily in patients 45–64 years of age. TKR utilization increases dramatically in the age group 50–59 years of age and primarily among women.
To assess revision rates, Healthline analyzed approximately 1.8 million (USA) Medicare and private pay records to find that the rate of revision for all age groups within five years from surgery is about 7.7 percent. The rate increases to 10 percent for those age 65 and older. Healthline also found a somewhat parallel number WORLDWIDE based on a meta-analysis of international joint registry databases (2011): the revision rate is 6 percent after five years and 12 percent after ten years. People are turning to revisions worldwide and the numbers are not decreasing.
Leaping ahead, the American Academy of Orthopedic Surgeons (ASSOS) anticipate that by 2030 projected growth of dependency on TKRs will increase by up to 189 percent, or 1.28 million procedures annually. (The ASSOS clarifies that these numbers are always shifting but not substantially from the pattern set)
Similar gains by 2030 are expected for revision TKRs, growing by 190 percent or 120,000 procedures.
By 2060, primary TKRs are expected to reach 2.60 million (382 percent increase), while revision TKRs s are expected to reach 253,000 (400 percent increase).
The mean age for primary total knees has declined significantly from 68 years to 65.9.
Females continue to make up the majority of patients at 55-62%.
It is interesting to note that a study in Europe found approximately 20% of all TKRs were judged to be inappropriate when using a combination of assessments including a formalized Osteoarthritis Index pain and physical function scores, radiographic features, knee motion and laxity measures, and age factors from patient pre-surgery histories. The same research was completed in the USA and found that one-third of TKR procedures were deemed unnecessary. (Riddle DL, Jiranek WA, Hayes CW. Arthritis Rheumatol. 2014 Aug;66(8):2134-43. doi: 10.1002/art.38685).
[In an editorial rebuttal to the above study, it was pointed out that, because a universally shared set of assessment criteria has not yet fully been developed and therefore not shared, the findings should not be considered conclusive. (Katz JN, Ibid)]
OK, THOSE ARE THE STATS. NOW WHAT?
How do we, the clients, make sound decisions about our health before we become the patients? We can begin by exploring our true options. They tend to be wider than the traditional orthopedic community is able, or in some cases willing, to lead you to think. Knees are connected to hips and spines, core muscles, ankles, shoulder blades. They are responsive to climatic humidity and emotional highs and lows, diets and/or lack thereof. Cells have memory. What is a flinch? A shudder? Anxiety, but a physical response to deep empathy or remembering trauma or disgust. What your body is struggling with is an ecosystem full of important issues we, as body stewards, have to understand before we sign off on an irremediable change in our lives and in our lifestyles.
YOUR PERSONAL CHECK LISTS
Consider the below unofficial checklists following your first round of traditional x-rays.
A. You have chronic pain but your Scans show NO structural changes to the joint:
Test for rheumatoid arthritis, bursitis, fibromyalgia, lupus etc.
See Osteopath for body alignment issues and corrections
See Podiatrist for foot/ankle/knee issues and corrections
See a Physical Therapist for muscle strengthening and additional alignment exercises
Meet w/ Stem Cell Orthopedic Specialist to assess options (For trained doctors in your area go to http://www.regenexx.com)
Soften or remove high impact physical activities, incorporate core muscle exercises
Add-in alternative low-impact activities
See Acupuncturist for pain management
See Dietician for nutritional assessment
Lose weight for joint health
Adapt home layout for easier movement
Consider replacing manual car with an automatic one
B. You have chronic pain and your Scans SHOW structural changes to the joint:
Replace all high impact physical activities with leg/core muscle strengthening exercises
Adapt home layout for easier movement
Replace manual car with an automatic.
Then decide on joint repair options and /or continue with modified lifestyle
Full body scans, if affordable, can be considered for assessing bone on bone relationships not only in the knees but elsewhere in the body that affects your ergonomic stature. Osteopathic medical doctors offer holistic points of view on these scans and accompanying strategies. Changing your physical patterns of behavior may be critical to your long term joint life: does an afternoon of downhill skiing really need to be on your agenda? What about the pleasures of simple yoga, swimming or isometrics? If limited knee flexion and instability prove to be the outcomes of arthritis does a change in diet, strengthening of your core muscles and use of acupuncture help, for now? Remember, certain kinds of (older) manual cars automatically (pun intended) create a persistently odd hip/knee/ankle alignment. Can you exchange cars for your long term mobility’s sake?
Does fear of chronic pain veil periods of painlessness? Does the undesirable demand to change personal behavior first cave to the desire for a professional, aka legitimate and immediate ‘fix’ now – when, in the back of your mind, might be the nudge to wait? In the end, do the gains (from surgery) outweigh the harms now and into the future?
The more boxes you tick off that complete a full scan of honest mind/body/ environmental concerns, the more confidence you will have going into your total knee replacement, if that is the final solution. The same absolutely applies for when you assess the need for a revision of your knee – though by then the evidence tends to be unquestionable. The emotional collateral that you amass on your journey to the operating theater is the collateral you will rely on during the repair phase, both times. Protecting yourself from undue joint replacement is worth the effort and the money and the time since once you start on this path there is no turning back. Take it slow if you can. For now, you can be the client, not the patient, looking for answers that are right for you.
This is a big topic. More can be said. What do you say?
My husband and I recently strolled the Rome film studios of Cinecittà. As film buffs we found the tour fun. I also found it sobering. Walking is a privilege I, of course, took for granted most of my life. Even my joint replacements offered good years of exercise though I should have slowed down some in order to give my joints more ‘shelf-life’. Now, I am thankful for days that are pain free.
Please consider a few lessons learned about knee replacements for ridding yourself of pain: orthopedics is an industry as well as a medical field of study and one currently tied to implant manufacturers first, regenerative medicine, or stem cell therapy, second or third. Knee replacement should only be a decision made when all else fails. In the States, replacements are being offered at far too young an age when in fact, they only last between 10-15 years before your bone or their metals begin to crumble. Mine lasted 14 good years. The revised surgery I succumbed to four months ago, with a non active lifestyle, will give me another ten years I am told. The options after that? Revised replacement of my revised total knee by perhaps age 72, joint fusion, and/or a wheelchair.
If I could do it all over again, and now with stem cell therapy as a viable option, I would invest in stem cell therapy and as soon as a joint problem becomes chronic. My older brother took this route a few years ago with his left knee and within three months of a week’s worth of medical care, returned to biking, skiing, and windsurfing. By investing in adult stem cell therapy, he also invested in more time to rely on his own body’s natural resources during his later years when invasive surgery is unarguably more traumatic. In comparison, I have used up my body’s options by relying on metal joint replacements and see a future surrounded by equipment, and limited exercise options currently including swimming and weight lifting.
Consider saving for stem cell treatment for inevitable joint pain. Look up the newest research by visiting www.regenexx.com, the Mayo Clinic, or the Galeazzi Institute in Milan where I completed my revised knee replacement and began once again with hands-on lessons in the relationship between body, science, and health.
More metal, more challenges, other opportunities, day by day.