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Ankle / My story: 3 surgeries in 3 years, BMAC, DeNovo, Microfracture.
« on: October 06, 2015, 03:18:35 PM »
Hi everyone,
I'm writing this update in the hopes that what I've learned over the years can help all of you out there, and have more successful outcomes than I have had. I’ve had 3 different surgeries in 3 years, consulted over 10+ surgeons around the country (WA, CA, IL), and feel like I’ve read nearly every scientific paper on treating an ankle OCD to try and find a solution. Sometimes, you're just a little bit unlucky.
Summary:
There are many methods to try to fix an OCD on the talus and it’s even more daunting to make a decision when a solution to your health is more of an art than a science. Surgeons will have very different opinions based on their training and experience, it is up to you to decide what you feel is right and choose something where you would be comfortable with the outcome- good or bad. What is right for you depends heavily on the level activity you wish to return, how much risk/unknown you can tolerate, and the size of your lesion. If you aim to walk pain free again and have a relatively small lesion, there are many methods that have high success rates. If you are like me, a high activity level athlete (competitive triathlon, skiing, running, soccer, cycling), with a larger lesion in a “complex” part of the talus (the corner), your chances are lower that you will return to these level of activities. That’s not to say it’s impossible, it’s certainly been done. For me, I think my fight is over for now. Over 6 months on crutches from 3 surgeries over 3 years, as a healthy, active, 25 y/o woman, I’m ready to be done. I’ve decided that I can’t spend my 20s in a cycle of recovery and surgery anymore in the hopes that maybe one day I’ll be able to race, or kick a soccer ball around again. I have no words to describe the feeling that I’m sure many of you have, of the immense heartbreak that comes with losing something you love. Selling my skis, my TT bike, and putting away the soccer cleats is a reality for me now. Until science comes up with a better “cure”, I’m adjusting to a low impact lifestyle, and will try to find joy in flip turns at the pool and walking with less pain. I am hopeful that scientific advancements will find a solution for all of us one day, and I am confident that for everyone out there battling this injury, that with the combination of a good surgeon, and the right procedure, and maybe some adjustments in life- we will all find peace and resolve in one way or another. For those of you who have been able to return to 100% activity, kudos- I did not get so lucky, but maybe one day I will.
Background:
2012: I had a particularly bad ankle sprain playing soccer.
2013: I underwent a microfracture surgery for the lesion. Recovery went well until returning to running and activity 8-12 months post op. In the middle of a run, my ankle lit on fire with sharp pain. The microfracture had failed.
2014: After extensive research and surgeon hunting, I decided that a DeNovo transplant would be my best option to restore hyaline cartilage and return to running, racing, and skiing. I proceeded with a DeNovo in October 2014 with standard recovery, 6-8 weeks NWB, then walking. I refrained from any impact activities, only swimming and biking. About 6 months post op, I was walking to my car and fell on uneven surface, spraining my ankle. An MRI the week following suggested complete damage of the DeNovo graft.
2015: I underwent a diagnostic arthroscopy exactly 1 year after my DeNovo surgery, with the same surgeon. This confirmed the previous MRI, the DeNovo graft was completely damaged. My surgeon then performed a BMAC, taking marrow from my pelvis and injecting it into the damaged site. The plan is to wait 6 months, then re-evaluate pain levels and treatment options.
My thoughts on procedures:
Microfracture: Great for smaller lesions. High success rates (80%+) for walking without pain and light activity. Lower success rates for high impact activity lifestyles. Worth a first try, unless you plan on extensively running in the near future.
DeNovo: A good solution, with more data showing promising results as time goes on but still immature in the results with only short term data available. Can be hard for insurance to process, but I had promising results before my injury. Shocking that none of the graft had taken even after the fall 6 months out. It is a very fragile method. Even though mine failed, it was due to my own misfortune, and I am still hopeful that this could be a viable option.
From one surgeon I’ve consulted: “I'm not a fan of denovo. It does have some good early term results in the literature, but such studies are often heavily industry biased and also biased by short follow up and lack of control groups. THe problem with many/all of the cellular based technologies is that we're good at getting the right kind of cells to a defect (de-novo is essentially ground up immature cartilage cells embedded in a matrix) but we can't get the 'architecture'. It is akin to getting a lot of sopranos and tenors to the opera, but there's no conductor. My experience with all things cell based so far (microfracture, autologous chondrocyte implants, BMPs, BMAC, etc) is that we get cartilage LIKE tissue into a defect but not cartilage. My bias has always been toward autograft or allograft osteoarticular transplants (OATS)--this gets you not only the cells, but the architecture and in my experience is the most successful, especially in high level athletes”
BMAC: This was an intermediary step to do something and try something different that would have a quicker and less painful recovery time than another DeNovo for me. I don’t recommend BMAC as the first choice of treatment, more of an augmentation or supplement to another. There is far less data on the viability and success of these stem cells at this point in time. As one surgeon commented to me “at the end of the day, you're still relying on some sort of cellular 'hocus pocus' to occur, and there has never been any evidence that one ends up with normal cartilage cells in their normal cartilage architecture.”
OATS: This is the one procedure I have not had, but has been recommended to me several times. I don’t know much about it, other than it is highly invasive, involves cutting open the ankle / breaking bone, but from several very experienced surgeons, I have heard this works well for individuals who want to pursue a highly active lifestyle. Though I do believe the downside risks and recovery are much greater. I’d love to read more about this one.
Biocartilage: Again, fairly new, I have not investigated it, and has not been advocated to me by surgeons, but open to seeing what happens.
Emotions:
This is hard. Being injured, immobile, getting surgery, is hard- for anyone, no matter how active you are. For me, I spiraled into depression after my first surgery trying to come to terms with the fact that I would never play in another soccer match. Since I could walk, I played soccer. I played collegiately, after college, etc. Soccer was my life. I lost more than a sport, I lost a community, a lifestyle, and meaning. It took a lot of counseling and strength to define myself outside of soccer. I am glad I did. I rediscovered who I am, found a bike, and look forward to riding this bike around the world one day.
Being able to accept uncertainty, probability of failure, and lifestyle adjustments is hard with this surgery. A good friend likened the process to miscarriages- each time you get hopeful it will work out, and then it doesn’t. At some point, you re-evaluate the situation and maybe stop trying, or find other methods. The only thing in life you can count on is change.
It’s also hard for others to understand, which is why a community like this is so great. Sure, the big picture is you still have your health. No, you aren’t permanently handicapped in a wheelchair, or have some terminal illness. But, it is an injury, and in some shape or form- you are losing a level of mobility that might be very meaningful to you, and that is not to be underestimated.
That’s about it. I could talk in more depth about surgeons, procedures, recovery, insurance costs, feelings, whatever, and am more than happy to. This is the hardest thing I’ve had to deal with over the last several years, and I sympathize with anyone who is in the same boat. Feel free to reach out to me via PM. I applaud this entire community for having the courage to heal. Here’s to hoping for better ankles!
I'm writing this update in the hopes that what I've learned over the years can help all of you out there, and have more successful outcomes than I have had. I’ve had 3 different surgeries in 3 years, consulted over 10+ surgeons around the country (WA, CA, IL), and feel like I’ve read nearly every scientific paper on treating an ankle OCD to try and find a solution. Sometimes, you're just a little bit unlucky.
Summary:
There are many methods to try to fix an OCD on the talus and it’s even more daunting to make a decision when a solution to your health is more of an art than a science. Surgeons will have very different opinions based on their training and experience, it is up to you to decide what you feel is right and choose something where you would be comfortable with the outcome- good or bad. What is right for you depends heavily on the level activity you wish to return, how much risk/unknown you can tolerate, and the size of your lesion. If you aim to walk pain free again and have a relatively small lesion, there are many methods that have high success rates. If you are like me, a high activity level athlete (competitive triathlon, skiing, running, soccer, cycling), with a larger lesion in a “complex” part of the talus (the corner), your chances are lower that you will return to these level of activities. That’s not to say it’s impossible, it’s certainly been done. For me, I think my fight is over for now. Over 6 months on crutches from 3 surgeries over 3 years, as a healthy, active, 25 y/o woman, I’m ready to be done. I’ve decided that I can’t spend my 20s in a cycle of recovery and surgery anymore in the hopes that maybe one day I’ll be able to race, or kick a soccer ball around again. I have no words to describe the feeling that I’m sure many of you have, of the immense heartbreak that comes with losing something you love. Selling my skis, my TT bike, and putting away the soccer cleats is a reality for me now. Until science comes up with a better “cure”, I’m adjusting to a low impact lifestyle, and will try to find joy in flip turns at the pool and walking with less pain. I am hopeful that scientific advancements will find a solution for all of us one day, and I am confident that for everyone out there battling this injury, that with the combination of a good surgeon, and the right procedure, and maybe some adjustments in life- we will all find peace and resolve in one way or another. For those of you who have been able to return to 100% activity, kudos- I did not get so lucky, but maybe one day I will.
Background:
2012: I had a particularly bad ankle sprain playing soccer.
2013: I underwent a microfracture surgery for the lesion. Recovery went well until returning to running and activity 8-12 months post op. In the middle of a run, my ankle lit on fire with sharp pain. The microfracture had failed.
2014: After extensive research and surgeon hunting, I decided that a DeNovo transplant would be my best option to restore hyaline cartilage and return to running, racing, and skiing. I proceeded with a DeNovo in October 2014 with standard recovery, 6-8 weeks NWB, then walking. I refrained from any impact activities, only swimming and biking. About 6 months post op, I was walking to my car and fell on uneven surface, spraining my ankle. An MRI the week following suggested complete damage of the DeNovo graft.
2015: I underwent a diagnostic arthroscopy exactly 1 year after my DeNovo surgery, with the same surgeon. This confirmed the previous MRI, the DeNovo graft was completely damaged. My surgeon then performed a BMAC, taking marrow from my pelvis and injecting it into the damaged site. The plan is to wait 6 months, then re-evaluate pain levels and treatment options.
My thoughts on procedures:
Microfracture: Great for smaller lesions. High success rates (80%+) for walking without pain and light activity. Lower success rates for high impact activity lifestyles. Worth a first try, unless you plan on extensively running in the near future.
DeNovo: A good solution, with more data showing promising results as time goes on but still immature in the results with only short term data available. Can be hard for insurance to process, but I had promising results before my injury. Shocking that none of the graft had taken even after the fall 6 months out. It is a very fragile method. Even though mine failed, it was due to my own misfortune, and I am still hopeful that this could be a viable option.
From one surgeon I’ve consulted: “I'm not a fan of denovo. It does have some good early term results in the literature, but such studies are often heavily industry biased and also biased by short follow up and lack of control groups. THe problem with many/all of the cellular based technologies is that we're good at getting the right kind of cells to a defect (de-novo is essentially ground up immature cartilage cells embedded in a matrix) but we can't get the 'architecture'. It is akin to getting a lot of sopranos and tenors to the opera, but there's no conductor. My experience with all things cell based so far (microfracture, autologous chondrocyte implants, BMPs, BMAC, etc) is that we get cartilage LIKE tissue into a defect but not cartilage. My bias has always been toward autograft or allograft osteoarticular transplants (OATS)--this gets you not only the cells, but the architecture and in my experience is the most successful, especially in high level athletes”
BMAC: This was an intermediary step to do something and try something different that would have a quicker and less painful recovery time than another DeNovo for me. I don’t recommend BMAC as the first choice of treatment, more of an augmentation or supplement to another. There is far less data on the viability and success of these stem cells at this point in time. As one surgeon commented to me “at the end of the day, you're still relying on some sort of cellular 'hocus pocus' to occur, and there has never been any evidence that one ends up with normal cartilage cells in their normal cartilage architecture.”
OATS: This is the one procedure I have not had, but has been recommended to me several times. I don’t know much about it, other than it is highly invasive, involves cutting open the ankle / breaking bone, but from several very experienced surgeons, I have heard this works well for individuals who want to pursue a highly active lifestyle. Though I do believe the downside risks and recovery are much greater. I’d love to read more about this one.
Biocartilage: Again, fairly new, I have not investigated it, and has not been advocated to me by surgeons, but open to seeing what happens.
Emotions:
This is hard. Being injured, immobile, getting surgery, is hard- for anyone, no matter how active you are. For me, I spiraled into depression after my first surgery trying to come to terms with the fact that I would never play in another soccer match. Since I could walk, I played soccer. I played collegiately, after college, etc. Soccer was my life. I lost more than a sport, I lost a community, a lifestyle, and meaning. It took a lot of counseling and strength to define myself outside of soccer. I am glad I did. I rediscovered who I am, found a bike, and look forward to riding this bike around the world one day.
Being able to accept uncertainty, probability of failure, and lifestyle adjustments is hard with this surgery. A good friend likened the process to miscarriages- each time you get hopeful it will work out, and then it doesn’t. At some point, you re-evaluate the situation and maybe stop trying, or find other methods. The only thing in life you can count on is change.
It’s also hard for others to understand, which is why a community like this is so great. Sure, the big picture is you still have your health. No, you aren’t permanently handicapped in a wheelchair, or have some terminal illness. But, it is an injury, and in some shape or form- you are losing a level of mobility that might be very meaningful to you, and that is not to be underestimated.
That’s about it. I could talk in more depth about surgeons, procedures, recovery, insurance costs, feelings, whatever, and am more than happy to. This is the hardest thing I’ve had to deal with over the last several years, and I sympathize with anyone who is in the same boat. Feel free to reach out to me via PM. I applaud this entire community for having the courage to heal. Here’s to hoping for better ankles!