A Total Knee Replacement Cautionary Tale
My Story & What You Can Be Mindful of During Your Surgery
– written by Effie Koliopoulus
Sometimes people assume that after a total knee replacement surgery that the knee is bionic. That we can do anything we did prior to arthritis effecting the joint and that recovery will be a breeze. Now that is not to say that patients who have undergone this procedure do not have it easy or recover at the optimal speed by each stage that orthopedic surgeons say how the knee should be. However, that’s not the case for everyone – especially for me. Due to juvenile rheumatoid arthritis I ended up having the disease attack my knee joint. Due to the extensive damage that had occurred, I chose to undergo a total knee replacement at the age of 29 to improve pain and my overall quality of life.
I was diagnosed with JRA almost thirteen-years ago, however, symptoms that went unchecked by doctors at the time appeared a couple years prior. My symptoms have always ebbed and flowed, with periods were disease activity was in a state of calm. There are countless of times though, when my condition was not controlled and raged uncontrollably like a wildfire leading to several flares on and off. One of those flares in the winter of 2013, led me to be bed-ridden for one week. It’s during that time that my knee joint was attacked. From then on I was slowly having knee issues up until my knee showed visible signs of a contracture were I couldn’t straighten my leg fully. This led to pain, swelling and walking with a limp. In March of 2015, a flare occurred again leading to severe pain to the point that I couldn’t even limp on it without taking pain medication or having some form of assistance.
From Rheumatologist to Orthopedic Surgeon
After seeking a new rheumatologist, I was sent to see an orthopedic surgeon right away. For several months, I tried my best to delay the inevitable. Several alternative treatments such as pre-knee rehab, strengthening exercises, stretching, massage, acupuncture, osteopathy, swimming, all helped prepare me to a certain extent. The only thing that would help fully would be surgery though. The rest is history.
So in June of 2016, I underwent a three hour long total knee replacement. Originally it is only supposed to take one hour and a half but due to the extensive damage that had occurred the surgeons had a lot of clean-up to do. Having an inflammatory disease creates the soft tissue around the knee to get damaged so it was important everything that was not supposed to be there was taken away before they closed me up.
My knee went from a contracture of about -35 degrees extension to about 0 degrees in about a couple weeks after surgery. Pre- surgery with the help of physical therapy and Dynasplint extensionator brace I was able to reach 27 degrees of extension. The knee flexion after surgery measured 50 degrees, as before surgery it was 70 degrees. Physical therapists were able to get it to 99 degrees after therapy and using different therapy tools. The “flexion situation” as I like to call it, is still a situation I am struggling with well almost two years out of my surgery. This is why I call my store a knee replacement cautionary tale.
Doctors warned me that the opposite effect can take place after the procedure or that I can even be worse off, if not better. It was a gamble and no one could really tell me a definite answer. The opposite did in fact happen to me. I went into surgery with better flexion range of motion than extension. When all was finished I was faced with another battle that of flexion ROM.
Having a pre-existing condition by no means makes recovery from such an invasive procedure any easier. In fact, those with inflammatory disease are at risk for arthofibrosis and other complications. Luckily, my bruising wasn’t bad and swelling eventually disappeared after be watched carefully for any signs of infection. During that time, I had at home therapy with a physical therapist who came to my home for a few weeks then I was sent to outpatient rehab. I can’t say the rehab protocol was gentle because it wasn’t.
They pushed and prodded my knee to bend. My knee however had other plans and did not like to be told when to bend and when to heal. It was and is stubborn. Though the exercises given were crucial in giving me my strength back, especially in my quad muscle that was severely atrophied due to the contracture, the therapy was too aggressive. My body has always been sensitive and never has been receptive to any aggressive approaches.
After Six Weeks
After six weeks of therapy the knee was at 70 degrees flexion. Compared to some patient’s degrees at this time frame, I was way behind schedule. I was then told I needed a MUA- Manipulation Under Anesthesia. I was so fearful that I would have pain and undergo the horrific tragedy I experienced a couple months prior.
I summoned up the courage and underwent the outpatient produce hoping it would help my knee bend more. The MUA was not nearly as bad as the former. There was some swelling but nowhere near what I had seen during the knee replacement. At the time of the MUA, the surgeon got my knee to 110 degrees of flexion. Luckily the extension still maintained the degrees I had achieved couple weeks after I was sent home.
From the time I was in the hospital recovery room to the moment I was in out-patient therapy I was give different modalities to help with pain, inflammation and range of motion. Some of these included the standard, icing, elevating, anti-inflammatories, pain medication, a good diet, to a name a few.
I Turned to the CPM Machine and Dynasplint
Some not so standard modalities used is a technology called, CPM or as they like to call it Continuous Passive Motion machine. Each orthopedic surgeon has their own opinions on it and not everyone is sent home with one. Since I was younger and younger people tend to heal faster, thus creating scar tissue at high speeds it was important to keep my knee moving. One night in the hospital, I used the CPM for a few hours to no avail. It caused too much swelling and irritation that the surgeons making the rounds to patients ordered to have no nurse place me in it for the remainder of my stay. They said once my knee “calmed” down I could use it when I went home.
So I did just that. In conjunction with home and out-patient therapy, I used the CPM like it wasn’t ever going out of style. I had scheduled dates with it sometimes once to three times a day ranging for one hour starting off to several hours. During this time the only good thing that came out of it was catching up on much needed shows. However, the one thing I was hoping it would help my knee specifically with seemed to not occur.
The CPM said 110º but I was really at 80º
From my experience, the CPM only helped to loosen the knee up before the physical therapists would start their rehab protocol workouts. It was something that helped get things moving a lot quicker so I could focus on other important treatments at therapy. If I didn’t use the machine beforehand the therapist would have to work at loosening me up for a good twenty minutes. When you only have an hour and a half, twenty minutes can seem like a huge waste of time. The CPM at times also help release fluid out of the knee making it less swollen. Though that was all helpful to each party involved in my care, there was a major discrepancy. The 110 degrees that the CPM was set to never once was what the physical therapist measured me at. I was only getting 80 degrees with the Goniometer – a measuring tool used by physical, occupational therapists and orthopedic surgeons. I began to give up. Why wasn’t the CPM giving me the same degrees across the board? I was spending countless of hours and paying extra out of pocket in order to rent it out longer since Medicare and Medicaid only covered so much.
I eventually gave my BFF or should I call it my frenemy away. Looking back I can’t say it helped me as much as it should or could have. Yes, I had several factors that were in my way from healing but I made it very far. My surgeons never even thought I would have full extension but I proved them wrong.
I went on to use other technologies like the Dynasplint, that I continue to use till this day for maintaining my extension which provides a gentle stretch and to work on my flexion. The straps aren’t too arthritis friendly though and being in it too long has messed up with my alignment. The straps always go right over the top and bottom of my scar and it creates tightness that my therapist or I have to massage out after.
Osteopathy Has Truly Been Helpful
Osteopathy has helped me tremendously. It is by my osteopathic physician that she found upon using the CPM machine and surgery in and of itself, that my hip and pelvis were unaligned. With the help of my osteopath, acupuncturist, massage therapist and exercise routine I was able to get proper alignment back which helped my range of motion and pain levels. The positioning of the CPM and Dynasplint, though they may have worked for some, did not suit my body. For a long time my alignment was leveled out but when I started using the Dynasplint flexion splint my hip and pelvis started to become unaligned once again.
I began to search other options. As I scanned google and total knee replacement message boards I read people’s success stories and other not so successful outcomes. People’s comments ranged from having another surgery, removing scar tissue, a revision surgery and being told by doctors nothing can be done for them. Until I found a post about a new technology called the X10. I saw that it was not in my state of Illinois, of course with my luck why would it be? I called anyways to inquire. Being the type of person that researches options and wants to know every single detail before immersing myself into something, I figured getting information can’t hurt.
X10 Rehab Technology though available to nearby states, is not readily available in Illinois. The positioning of the X10 is what interested me the most. Upon reading testimonials I didn’t see anyone complain about alignments being thrown off or having to be uncomfortable strapped it. It’s not natural for the body to be placed in machines like the CPM, because our bodies need to be in a state of equilibrium and balance. Though the future is still unclear as to what will happen with my knee flexion, I have hopes that in time it will come into my 110-degree goal and beyond. My knee replacement cautionary tale does not have a conclusion yet.
With the X10 on the forefront of helping so many patients overcome tremendous difficulty and complications, I feel that much safer to think this could be an option to use if I ever need something in the future.
The X10 Meta-Blog
We call it a “Meta-Blog” because we step back and give you a broad perspective on all aspects of knee health, surgery and recovery.
In this one-of-a-kind blog we gather together great thinkers, doers, writers related to Knee Surgery, Recovery, Preparation, Care, Success and Failure. Meet physical therapists, coaches, surgeons, patients, and as many smart people as we can gather to create useful articles for you. Whether you have a surgery upcoming, in the rear-view mirror, or just want to take care of your knees to avoid surgery, you should find some value here.
Wonderful and insightful article. Not surprised that the CPM machine was giving bogus feedback on ROM. What a shame to pay out of pocket for such disingenuous results. Best of luck on your recovery!
Effie – we’ll done and thank you for sharing your story!!!
Thank you so much for sharing your story. It is so important for patient’s to be advocates for themselves and I hope your story provides insightful and honest information to another person on their knee journey! Just like in your case, I often see my younger patients struggling with pain and lack of ROM in knee recovery due to fast forming scar tissue but that doesn’t mean it cannot be overcome! Best of luck on your journey going forward!