A friend recently shared the following story of his successful navigation of the American health care system to get innovative treatment for his ankle. I was so impressed that I thought I’d post it here as a beacon for anyone else searching for answers about the same challenges he has faced. It’s pretty geeky and detailed, but hey, that’s what a peer patient would want AND that’s what this blog is all about!
If a search landed you here: Welcome! If you have any questions, please write a comment and my friend will answer as best he can.
Hello friends,
At age 38 I’m recovering from my eighth ankle surgery. Growing up I was always playing sports at various levels. I’m a former professional race car driver, recreational mountaineer, national champion downhill mountain biker and state champion soccer player. Now as a father of two young children I need to walk, run, jump and play whatever they want to as well as snowboard or ride my bike occasionally. All pain-free of course.
My hope is to share my treatment story about how I continue to overcome significant ankle pain caused by Trevor’s disease and severe cartilage degradation.
After getting opinions from nearly 30 of the best ankle specialists in the U.S. and Germany, I got tired of hearing that my only options were ankle fusion or joint replacement. At the time I was getting all these expert opinions I was in my early 30s and neither option was actually going to solve my problem. Ankle joint replacements are for people far less active and usually further along in life’s journey (70+ years young). I’m hoping to crack triple digits and live to 100. Fusing my ankle joint guaranteed knee, hip and back problems as well as significant pain in other areas of my body.
I decided to become a topic expert on human cartilage transplants in the ankle as well as bone spurs on the tibia and talus that prevented range of motion.
My strategy was simple: remove bone spurs blocking range of motion (dorsiflexion and plantar flexion) and implant human cartilage where bone surfaces rub/bear weight in the ankle joint. After an extensive search I found a doctor that respected what I felt in my own body, my prior surgical experiences and the research I had done. I was very specific about where I wanted bone removed as well as where I wanted human cartilage implanted. In my case, I wanted human cartilage because I believe it has the highest likelihood to grow and mesh with my body versus something grown in a lab or another foreign substance.
My most recent four surgeries enacted the plan. Remove bone spurs that blocked range of motion and implant donor, juvenile, human cartilage (DeNovo, made by Zimmer) to prevent future arthritic pain caused by bone-on-bone contact in the joint. The cartilage was placed on the front underside of my tibia as well as the front and top of my talar dome.
While every person’s body is different, one of the keys in my case was not bearing weight on my ankle for a full 12 weeks after surgery to allow the cartilage time to adhere to the bone. Some doctors say you only need 6 weeks of non-weight bearing, others say you need 12 weeks. For me, I erred on the side of caution with more time to allow the cells to heal, grow and adhere to my bone surfaces.
Besides, in the long game of life the difference between 6 and 12 weeks is nothing if it means I can live a pain-free, somewhat normal life walking or running with my kids.
Another reason I went 12 weeks instead of 6 non-weight-bearing is because I had cartilage implanted on the underside of my tibia. Many of the doctors, including the one that operated on me, were openly skeptical about it adhering to the underside of my tibia. Good news, in my case: after three years the implanted cartilage on the underside of my Tibia is still there.
Think of your ankle joint as a peanut butter and jelly sandwich.
After you put the PB and J on the bread and squeeze the two pieces of bread together, all the PB and J comes out the sides. Your tibia and talus bones are the bread and the cartilage transplant is the peanut butter and jelly. Not wanting the good stuff to squish out the sides, I went with the long game and 12 weeks with no weight-bearing activity.
Another key of my ongoing journey is my laser focused physical therapy (PT) regime. While the PT was somewhat similar after each of the recent four surgeries, there were also changes I made when listening to my body, such as when I was pushing too hard. Over the years I’ve learned there are different types of pain and the sensations/feelings associated to them. There is a difference between a pain sensation of “stop you’re doing damage” and “I’m sore due to a good workout.” Everyone’s body/thresholds are different and all I can recommend is that you listen to your body. That said, do not let pain deter your long-term goals/strategy. It’s a balance and it will be painful or uncomfortable, but that’s part of healing. Also, do not try to jump, run or any other high impact activity on week 12, 13 or 14. Ease back into these things and while everyone’s body is different, I didn’t touch light jogging until almost 8 months post op (remember my PB & J example above).
Here is a brief overview of what worked for me:
- 0 – 2 weeks post op, no movement stay in cast
- 2 – 3 weeks post op, no weight bearing, no PT bands, foot and ankle joint movement exercises from a seated position, this also depends on how your incisions are healing and if you still have stitches in. 3 days per week, M, W, F, Sat and Sun off days
- 3 – 6 weeks post op, no weight bearing, no PT bands, seated position ankle exercises and layer in non-weight bearing exercises to maintain strength in your other leg muscles (quad, hamstring, butt, etc. which your PT can prescribe). Exercising other leg muscles non weight bearing makes your recovery faster once you can bear weight. 3 days per week, M, W, F, Sat and Sun off days
- 6 – 12 weeks post op, exact same as 3 – 6 week regime, but add in PT band resistance exercises for ankle strengthening, still no weight bearing, done in seated position.
- 12 weeks+, listen to your physical therapist and your body and build in weight bearing exercises at a slow pace.
Last but certainly not least: insurance coverage.
What medical treatment journey would be complete without the joy of the U.S. insurance system? I could write a book on this section alone as anyone that has unique conditions can.
My soapbox, vent moment: the U.S. insurance system is a complete mess and the patient is not a priority.
Now back to the facts. The DeNovo juvenile cartilage implants are not covered by Cigna insurance as they are considered experimental. During the insurance appeal process back in 2018 I called Zimmer and they provided me with clinical data for a study they were running on around 200 ankle patients in order to try and gain insurance approval. Back then, my insurance company denied coverage. The first surgery in 2018 each package cost around $12,000. In my last surgery, six weeks ago, the price had come down to $4,250 per package. I have not checked with Zimmer directly on the status of their trial and insurance approval, so I would recommend you do that if this is a possible treatment option for you.
You can also have your doctor write a letter of necessity to the insurance company to help your cause. This could help gain approval if you have insurance through an employer and the company you work for is self-insured. Meaning your insurance card might say Cigna, Anthem or any other insurance company, but your employer is merely using them to administer the health coverage program and actually pays out of pocket for employee health costs.
In simple summary, never give up as your health, happiness and being pain free are worth fighting for! Hopefully my story helps anyone else affected by this unique and painful situation. This is a long game. It’s mental just as much as it is physical and requires patience as well as perseverance. See you out there as we collectively enjoy the journey of life together. If you have more questions or would like to chat, feel free to add feedback here and I’ll do my best to respond quickly.
Sincerely,
A friend sharing his experiences with the hope of preventing pain and empowering perseverance
Further details below.
Timeline:
- 6/24/1994- 1st surgery
- 1/19/1996- 2nd surgery
- 2003- 3rd surgery
- 5/20/13- 4th surgery
- 6/19/18- 5th surgery, Fox Valley Orthopedics, Geneva, Illinois, surgeon Eric K. Bartel
- 3/5/19- 6th surgery, Fox Valley Orthopedics, Geneva, Illinois, surgeon Eric K. Bartel
- 3/6/20- 7th surgery, Fox Valley Orthopedics, Geneva, Illinois, surgeon Eric K. Bartel
- 8/20/21- 8th surgery, Fox Valley Orthopedics, Geneva, Illinois, surgeon Eric K. Bartel
Key Search Words:
- Ankle cartilage transplants
- Trevor’s Disease
- Ankle arthritis treatment
- DeNovo
- Particulated juvenile cartilage allograft transplantation
- Ankle cartilage repair
- Juvenile cartilage
- Osteochondral lesion
- Talus bone spurs
- Tibia bone spurs
- Ankle cartilage loss
- Particulated Juvenile Cartilage Allograft Transplantation (PJCAT)
- osteochondral lesions of the talus (OLTs)
Article Links:
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4175163/
- https://www.markdrakosmd.com/pdfs/particulated-juvenile-articular-cartilage-allograft-transplantation.pdf
- https://www.zimmerbiomet.com/en/products-and-solutions/specialties/biologics/denovo-nt-natural-tissue.html
- https://www.zimmerbiomet.com/content/dam/zb-corporate/en/products/specialties/biologics/denovo/97560800300DeNovoSTAnkleCartilageRepair.pdf
If you’d like to learn more about how to find other people who share your symptoms or health condition, I recommend reading Matt Might’s guide to using the internet to find a patient match.
Image: WBS Kyčerka, by Martin Dvoracek on Flickr. I chose this image of a mountain bike racer to symbolize my friend’s past & hopefully future athletic pursuits.
I so relate to this article. Every doctor I went to for my back (all orthopedic surgeons) said “you need a fusion – no doubt about it.” Got referred to an orthopedist who does not do surgery – which is what I wanted in order to get an honest opinion from someone who doesn’t get paid by the surgery. She sent me to a neurosurgeon who specializes in spine issues. She was doctor 5, he was doctor 6. He said, “ let’s try something minimally invasive without leaving metal in first – it may work and fix the problem, it may not and you will need something else within 5 years, but for 60% it works.” I tried the less invasive option. It’s only been 2 months but I have zero pain for now and am up and about. We will see how it is in 5 years, but at least he gave me options. Insurance cost for the option I chose was a fraction of the other, but no one suggested it until I fought my way through the system for answers. It’s insanity.
Ugh! I’m sorry you had to take the time to find and consult 6 doctors in order to get the advice (and result) you want, but glad you got there. Not many people would have the wherewithal and time to stay on the path like you and my friend featured above.
Hello – our 12 year old son had his first surgery for Trevor’s Disease in April 2022. While he used to walk normally, he has not walked normally since. We are finding that the doctors are perplexed by what appears to be a now locked ankle joint. There is evidence of a bone spur, which they say isn’t the issue but I believe it is in part. If there is any way to be in touch with the patient whose case is documented here, we would be extremely grateful. Navigating this rare condition has been challenging to say the least. Any insight is appreciated.
Sincerely,
Carrie (mom to Brandon)
Carrie, I will give your email address to my friend and he will be in touch directly. I am so happy that our plan worked and you found this post!
Thank you Susannah! We are in touch :):):)
this resonates hard!
“I’m hoping to crack triple digits and live to 100. Fusing my ankle joint guaranteed knee, hip and back problems as well as significant pain in other areas of my body.”
I’ve had (at least) 4 ACL tears (I might be missing my other again)… as a part time professional skier, moving isn’t just a job, it’s a way of life.
I wish I’d taken Trevor’s level of ownership over my own injures – and I was already driving everything I could.
Trevor I’m so impressed with your drive, curiosity, and willingness to keep challenging our very broken system which is anything from human-centered.
Yes! You see the grit & verve that I saw when my friend told his story (boot on his foot, propped up on a chair, but pure energy animating his face). I was like, “This can’t end with you. We’ve got to share it.”
He and I collaborated on this post in 2021 when I was researching my upcoming book, Rebel Health. In 2022, I started sharing my archetype concepts — the people you’ll meet in the patient-led revolution. My friend — and Carrie — are Seekers, who go out on the hunt. As rebels, they reject the menu of options being offered and instead cook up their own solutions, together. I’m thrilled to share that my book is coming out February 2024 and is available for pre-order.
Side note: the name of the condition is “Trevor’s disease” but my friend’s name isn’t Trevor 🙂
I find it amazing that your friend has been able to successfully advocate and hopefully long-term heal himself. I am hopeful that the dedication he has made to this will have a lasting impact on the Trevor’s community. My son was diagnosed in July, and it is as well in his ankle. I want him to have a second opinion because the doctor he is currently seeing has never had a Trevor’s patient and the hospital has only ever had one, and it was in the patients’ hips. I love that they were so transparent, however I want to just make sure that the, “wait and see” approach we are taking is the right approach. It’s such a rare disease, and there is so little literature that it makes it difficult to make informed decisions. How is your friend doing now? According to timeline of surgeries, his last one was over 2 years ago. Has it now gained enough clinical data for insurance approval?
Hi Kimberly! I’m so glad you found this post. I’ll ask my friend to add his perspective but I can tell you that his recovery from that surgery two years ago has gone very well.
Hello everyone,
Thanks to Carrie Kimmell, I wrote an update to this ongoing story on LinkedIn:
Wow! How? Trevor’s disease
Here’s the second half of the post, which starts with Carrie’s own account:
“In his own desperation to find a solution for himself, Mr. Trevor has become a self-educated expert, and works closely with his doctor to design his own surgeries.
And now he is using his experience to help Brandon.
Mr. Trevor has become our partner in this journey.
He has become our advocate and advisor.
He has helped us organize, understand, and analyze the case so that we can ask better questions.
He is teaching us how to navigate the medical system.
And in a serendipitous twist of fate, my own father spent part of his career developing a cartilage product that may be in Mr. Trevor’s future.
Life’s fingers have been at work intertwining us with an absolute stranger, who independently decided to help anyone he could.
The connection has been an illustration of how working through your own setbacks, your own messes may be the perfect training ground for you to help someone else in the future.
In a world where control is an illusion, we have that choice.
You can choose to trust in the messes, the unforeseen, unexpected turns.
You can choose to give and receive.
You may be someone else’s turning point, their anchor in the future.
Trevor’s Disease has connected us with a wonderful human being and we are grateful.
The path ahead is uncharted. But we have a wise captain.”
My upcoming book, Rebel Health, identifies and describes the four types of people you will meet in the patient-led revolution in medical care. Carrie, as I wrote above, stepped into her power and became a Seeker. She hunted relentlessly for answers, fueled by her frustration. “Mr. Trevor,” who would like to remain anonymous, is a Solver. He creatively got access to what he needed, experimenting and taking notes about what did and did not work. I’m honored to say that I played the role of Networker in this story. Networkers pool resources, helping to make connections among people. I know “Mr. Trevor” personally and, once I heard his story, I knew I had to write about it on my blog, hoping that someone like Carrie would eventually find it.
My son was diagnosed with Trevor’s in 2018 at 14 when they realized his talus had been completely eaten away. He also has another growth on his femur but they want to wait because his muscle may be involved. Finding a surgeon to treat him was so hard because no one knew anything about the disease. He’s now 19 and is starting to struggle with the pain again. My heart breaks for him
Kristy, I’m so sorry to read about your son’s pain. I’ll message the other people who are on this comment thread to see if they have advice to share.
I asked “Mr. Trevor” for his advice and he wrote:
“There is a lot of advice I can share, based on daily pain and 8, soon to be 9 surgeries 🙂 For the sake of simplicity in case they are not comfortable talking to me, educate yourself on what your other ankle and or tibia look like as those are ‘normal’ and get as many different doctor opinions as possible on methods to get your ankle and tibia to look like the normal side. That breaks down what I’ve done for the past 26 years in one sentence.”
And he is happy to talk with you or your son. I’ll send you an email to follow up further.
Hi Kristy – I’m Carrie Kimmell from some of the above posts (Brandon’s mom). Brandon is 13 and we discovered Trevor’s Disease by accident in his ankle at age 3. He did not have any pain associated with it until he was 11 when it came on suddenly and acutely. Stanford Children’s hospital removed the osteochondroma in his ankle at that time. Unfortunately before he went into the surgery his gait was normal and after 30 days of immobility post surgery, he’s never had a normal gait since.
It’s taken us almost two years of doctors to get to the bottom of the abnormal gait which appears to be caused by severe arthritis in the talor-navicular joint (9.5 out of 10). He’s received two Dysport injections and is currently moving the best he has since his Stanford surgery (April 2022).
The foot and ankle doctor we finally got into (we now live in the Carolinas) has projected that at some point Brandon will need a talor-navicular fusion but suggests we put that off as long as possible … so that’s where we are.
Please feel free to reach out via email if it’s helpful to dialogue more. I don’t know a lot other than our own experience, but sure wouldn’t mind having a network both for ourselves and our boys now and in the future.
Warmly,
Carrie
Hello! I am reaching out for my 16 year old daughter who was diagnosed at the age of 2 with Trevor’s disease. She had surgery shortly there after to remove the tumor growing in her left ankle and fused to the growth plate.
They left some of the tumor due to the location and being attached to the growth plate. She is now starting to complain of pain and discomfort on a daily basis. Our pediatric orthopedic specialist basically told us that there is nothing they can do and she will have to live with it and whatever the outcome may be. She is a cheerleader and constantly conditioning and training. Please help me with contact information to find a surgeon who can help her!!!
Hi Jennifer,
I’m so glad you found this post! I will forward your message to the author and see if he can connect with you directly to share advice.
Susannah