Re: Youngest Triple Arthrodesis patient in group?

[jjfc...@gmail.com]

Hi!

I’m not a younger fusion patient but I am a PT and have seen a lot of bad feet over my 30+ year career. I just wanted to add my 2 cents and tell you to choose your surgeon carefully. Even if you love and trust the ortho you have now, I would recommend looking for some with a lot of experience with feet similar to your daughters. Probably a surgeon that has done tons of pediatric reconstructive surgeries. The ankle is an extremely complicated joint as it’s actually made up of multiple joints (I know you know this). With the deformities you described and the high activity level of your daughter, I would only settle for the best as a poor outcome would be devastating. 

I’m speaking a bit from my own experience. I chose my surgeon based on a couple good outcomes with some of his patients I worked with in my role as a therapist. I also checked some online reviews. I had a severe trimalleolar fracture-dislocation at 17 that was poorly managed without surgery. By the time of my surgery, at age 59, my ankle joint was completely shot. My surgeon missed a whole lot of factors that should have been addressed had he looked more closely at my x-rays, taken a more thorough history, analyzed my gait and addressed where I was experiencing pain. He did a basic ankle fusion that cause a cascade of other problems in the rest of my foot and ankle joints. He did a second surgery to address those problems and ended up damaging a nerve in my foot. I also have a significantly shorter leg on that side. I won’t go into all the details except to say I’m now disabled and need crutches for any walking I do outside my home.

It may or may not be possible, but I would recommend doing one ankle at a time so as to maintain a basic level of mobility during the recover. She’s already low tone and sometimes when patients like that become completely non-weight bearing they never can regain the same level of strength they had before. Also, the surgeon will be much more focused and less fatigued if he/she hasn’t already completed a complicated surgery on ankle #1, avoiding the real risk of human error (yes, even the best surgeons make errors when they’re tired). 

I hope this helps. I wish you and your daughter the best.

Julie

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On Jun 24, 2020, at 9:32 AM, J D <jjdie...@gmail.com> wrote:



My daughter is 19. She has a non-specific neuro developmental disability that has contributed to life long low muscle tone. We like our ortho. He has known our family for 21 years and we respect that he encourages second opinions, does not choose surgery as a first course of treatment, and many other reasons. He's well regarded and we've been to many orthos for other opinions. We're always open to new ideas and opinions. 

A little background. As I mentioned, she's been low tone since birth. PT/OT, wears bilateral DAFOs. 2006 bi-lateral calcaneous osteotomy and tendon lengthening. As she grew, she collapsed again. The muscles are imbalanced and can't keep the bones in place. Orthotics are part of her identity and she doesn't mind them, but as she gets bigger (she's petite at 100#) the collapse continues. We have a great orthotist as well who has known her feet all these years and works to get great fitting orthoses. But, there is wear on her feet no matter what because she plays hard. She never had a typical ankle presentation. Her bones have never been oriented in a typical fashion. The calcaneous flares out at a crazy angle. Talus and navicular aren't shaped or oriented "typically". She can walk without her braces, foot is so pronated her talus hits the ground. She has significant calluses on her talus region from the pressure. We've been talking triple arthrodesis for about 5 years. Some surgeons were ready to cut asap. We did not want to until she stopped growing and growth plates were done. She was especially braceable when she was smaller and is very mobile. Another challenge is her feet are border line osteoporotic since she's never had a good foot strike to develop the bones. Adding to the mix was a multiple fracture of the tibeal plateau 2 years ago (bike accident, like I said she plays hard). The resulting knock knee has added to the foot issues. 

So, we're kind of at the point where we all think it's time for the triple arthrodesis. She's not going to really lose any gait motion, it's pretty much all she's had in orthotics. The final deciding factor is the doctor's concern that the continued pressure on the inside is going to affect blood flow to the feet leading to issues that could result in infection and amputation in the worst case scenario. 

With that background, if you've read this far, thank you. So, in my readings, the typical foot for the procedure seems to be an older adult. I cannot find much in the literature about the procedure on younger feet, with the exception of cerbral palsy, and never a young adult with genetic bone deformities. 

Is there anyone in the group that is younger with post op experience to share? Any underlying genetic conditions? We need at least 60 years out of these feet and we're just trying to decide best course of treatment. We've discussed at length how things could fail, what next action would be (total fusion), recovery, a lot. To help with fusion post op, we're possibly going to go with additional external fixation so the knee roller would be out. 12 weeks no weight bearing is what we did for the tibial plateau fracture. Wasn't fun, but we got through it. 

We welcome hearing from anyone. This seems like a really supportive group.  Thank you.

Jennifer

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[J D]

Thank you Julie for sharing your experience. I didn't mention that one foot at a time would definitely be the approach. Your remark about regaining strength is also noted. She's almost 2 years post tibial plateau fracture and still not 100% back to where she was. Even if there wasn't external fixation, she would struggle with a knee roller (motor planning) so we have to keep up the strength in other ways. Two feet at once would be an impossibility. We know we're in this for a long time between recoveries one foot at a time.

We are already scheduled for a consult at another facility that we haven't been to before and I've also contacted HSS and gotten a list of surgeons from them. Your point is very valid that it isn't just about likes. I do know that facilities like HSS will have a lot more surgeries and possibly some experience with deformities like hers (although not likely from everything I've read and the various doctors we've met over the years).  Just to visualize beyond the x-ray and CT scans we have, I'm working with someone to get 3D prints done from her scans so we can see just how twisted they are. 

We would hate to have to have a revision surgery and have pushed it off so long wanting to try to "get it right the first time". I sympathize with your challenges and truly appreciate you sharing your experience such that we can try to minimize the multitude of risks.

Best wishes.

On Thursday, June 25, 2020 at 3:04:57 PM UTC-4,

Hi!

I’m not a younger fusion patient but I am a PT and have seen a lot of bad feet over my 30+ year career. I just wanted to add my 2 cents and tell you to choose your surgeon carefully. Even if you love and trust the ortho you have now, I would recommend looking for some with a lot of experience with feet similar to your daughters. Probably a surgeon that has done tons of pediatric reconstructive surgeries. The ankle is an extremely complicated joint as it’s actually made up of multiple joints (I know you know this). With the deformities you described and the high activity level of your daughter, I would only settle for the best as a poor outcome would be devastating. 

I’m speaking a bit from my own experience. I chose my surgeon based on a couple good outcomes with some of his patients I worked with in my role as a therapist. I also checked some online reviews. I had a severe trimalleolar fracture-dislocation at 17 that was poorly managed without surgery. By the time of my surgery, at age 59, my ankle joint was completely shot. My surgeon missed a whole lot of factors that should have been addressed had he looked more closely at my x-rays, taken a more thorough history, analyzed my gait and addressed where I was experiencing pain. He did a basic ankle fusion that cause a cascade of other problems in the rest of my foot and ankle joints. He did a second surgery to address those problems and ended up damaging a nerve in my foot. I also have a significantly shorter leg on that side. I won’t go into all the details except to say I’m now disabled and need crutches for any walking I do outside my home.

It may or may not be possible, but I would recommend doing one ankle at a time so as to maintain a basic level of mobility during the recover. She’s already low tone and sometimes when patients like that become completely non-weight bearing they never can regain the same level of strength they had before. Also, the surgeon will be much more focused and less fatigued if he/she hasn’t already completed a complicated surgery on ankle #1, avoiding the real risk of human error (yes, even the best surgeons make errors when they’re tired). 

I hope this helps. I wish you and your daughter the best.

Julie

Sent from my iPhone

On Jun 24, 2020, at 9:32 AM, 

[jjfc...@gmail.com]

No problem! I can tell you have a lot of knowledge and are a great advocate for your daughter. The 3-D images are going to be so helpful. Let us know how it all goes. I’m glad this is a one at a time process even though the recovery will be long. Good luck to your wonderful daughter. She sounds like a lot of fun! ❤️

Best,

Julie

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On Jun 25, 2020, at 3:28 PM, J D <jjdie...@gmail.com> wrote:



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[Kim Connolly]

Hello everyone, I have had triple arthrodesis surgery about 18 months ago at Hopkins with an excellent foot and ankle surgeon. I have been a nurse at Hopkins for 35 years and can speak from experience that a good specialist is essential. I had an excellent outcome. My son was born with a congenital ankle deformity however, and I would strongly recommend Dr John Herzenberg at the Rubin Institute for Advanced Orthopedics in Baltimore. He and his colleagues are world renowned at caring for children with complex orthopedic problems. My son owes his ability to walk from him. 

Kim 

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On Jun 26, 2020, at 11:34 AM, jjfc...@gmail.com wrote:

No problem! I can tell you have a lot of knowledge and are a great advocate for your daughter. The 3-D images are going to be so helpful. Let us know how it all goes. I’m glad this is a one at a time process even though the recovery will be long. Good luck to your wonderful daughter. She sounds like a lot of fun! ❤️

To view this discussion on the web visit https://groups.google.com/d/msgid/ankle-fusion-support/714A8EDB-CF49-4C4A-AACF-CE9E598EE076%40gmail.com.

[Kim Connolly]

Jennifer, would be happy to talk with you off line about Dr Herzenberg and his colleagues. The best of the best. My son was facing an amputation of his foot and ankle and after several surgeries and a long haul he now walks with his own leg with a brace to just protect it. As I said, I have been a nurse at Hopkins for 35 years, and the surgeons at Hopkins could only offer amputation, 

Kim 

Sent from my iPhone

On Jun 26, 2020, at 9:01 PM, Kim Connolly <kimc...@gmail.com> wrote:

Hello everyone, I have had triple arthrodesis surgery about 18 months ago at Hopkins with an excellent foot and ankle surgeon. I have been a nurse at Hopkins for 35 years and can speak from experience that a good specialist is essential. I had an excellent outcome. My son was born with a congenital ankle deformity however, and I would strongly recommend Dr John Herzenberg at the Rubin Institute for Advanced Orthopedics in Baltimore. He and his colleagues are world renowned at caring for children with complex orthopedic problems. My son owes his ability to walk from him.