Ankle TAR UPDATE

[Jockette]

@LauraC

By the way, I merged your newest thread with your original recovery thread, as we prefer that members in recovery have only one thread.

This benefits you because all your information is in one place, easy to find, and maintains a nice journal for you.

This also benefits our staff, as your information is all in one place, and we often go back through your thread for previous details, so we know what you‘ve been through which helps us advise you better.

So, please keep all your posts in this thread. If you’d like a new title, let us know what you want, and we’ll change it for you.

Many members bookmark their thread in their computer browser, so they can find it when they log on.
How can I find my threads and posts?

Best wishes on your continuing recovery!

 

[LauraC]

@LauraC

By the way, I merged your newest thread with your original recovery thread, as we prefer that members in recovery have only one thread.

This benefits you because all your information is in one place, easy to find, and maintains a nice journal for you.

This also benefits our staff, as your information is all in one place, and we often go back through your thread for previous details, so we know what you‘ve been through which helps us advise you better.

So, please keep all your posts in this thread. If you’d like a new title, let us know what you want, and we’ll change it for you.

Many members bookmark their thread in their computer browser, so they can find it when they log on.
How can I find my threads and posts?

Best wishes on your continuing recovery!

Thanks so much, I tried to do that, but just couldn't quite manage it.

 

[LauraC]

I got my ExoSym in late December and am finally pain free and can walk again. A lot of strength training is required to use the ExoSym device, so i am now in better shape than I have been in years. I can't believe how wonderful it feels to be mobile. So my TAR just is coming along for the ride, and has really not helped. Unfortunate, but I am very happy that I found a solution.

 

[Jaycey]

@LauraC So glad you found a way forward with this ankle. Well done!

 

[FCBayern]

That's great you found a solution @LauraC. That technology was beginning to be used in 2011 when I had my TAR, but it was pretty strictly used for wounded soldiers at the time. I'm sure they have improved greatly since then as well. I would be really interested to know how you progress.

 

[Mr_TalarCyst]

@LauraC. I have large (2.2X 1.9 cm, 1.3 cm depth) cysts in my right talus, along with damage to overlying cartilage, and have been exploring surgical options, including OATS and TAR.

I know that many people have positive outcomes from TAR, but you obviously did not. And it seems that your conclusion is that you would have been better off skipping the surgery and getting the ExoSym to begin with.

If the ExoSym allows major functionality without pain, that seems like an option worth considering for more of us. If you are willing to share, I'd be very interested to hear about what using the ExoSym is like. Do you use it on a daily basis or just for more extensive walking and outings? How far can you go with it pain free? Have you used it for complex activities like yard work, performing home repairs, etc?

In any case, glad you have found something that is improving your situation!

 

[LauraC]

@LauraC. I have large (2.2X 1.9 cm, 1.3 cm depth) cysts in my right talus, along with damage to overlying cartilage, and have been exploring surgical options, including OATS and TAR.

I know that many people have positive outcomes from TAR, but you obviously did not. And it seems that your conclusion is that you would have been better off skipping the surgery and getting the ExoSym to begin with.

If the ExoSym allows major functionality without pain, that seems like an option worth considering for more of us. If you are willing to share, I'd be very interested to hear about what using the ExoSym is like. Do you use it on a daily basis or just for more extensive walking and outings? How far can you go with it pain free? Have you used it for complex activities like yard work, performing home repairs, etc?

In any case, glad you have found something that is improving your situation!

As I progress with the ExoSym device, I remain quite convinced that it was absolutely the correct move for me. I don't spend a lot of time wondering if I could have skipped the TAR but am certain that I could have with the same or better results that I see today. I would however, never have known if I would have been one of the patients with positive TAR outcome...or not.

Because of the design of the ExoSym, it is made to be worn all of the time. It essentially replaces your ankle and takes training and strengthening to walk correctly. It is my new leg, and I am in full acceptance of that. It is when you walk correctly that you have no pain. Since most of us have been protecting our injuries, we are very weak. Now, after almost 6 months of very rigorous strength training, I can walk without pain (and quite quickly), all day long. I am happy to wear it all day to keep the muscles that I have developed strong, and walking without pain. So I take it off in the evening, and hobble around the house and do not sleep with it on. My ankle still is quite panful and I sometimes have to wrap it to sleep because it still aches, the ExoSym is not a replacement for that kind of ankle pain.

I can do whatever activities that I would like. So far, I have done a lot of gardening, long days on my feet and have hiked up to 5 miles so far. I am planning to walk a 5K next month as well. Can climb stairs, can train with my dog etc. Some people run in the ExoSym, but I was never a runner. I have not climbed a ladder, but probably could if I wanted to, I have never liked or felt steady doing that before TAR.

The biggest drawback is the cost of the ExoSym. For me 100% out of pocket, and 100% out of pocket for the DPT/CSCS who helped me get a strengthening program. That may not be the case for everyone, but with my insurance that was the case. One of the biggest benefits besides the amazing results that I have seen with my fellow ExoSymers, is the support that your get to learn how to use the device. You are required to spend time in the gym at the clinic when you pick it up, to actually learn what it is about, you don't just take it home and experiment.

It was worth it, because I am now active, feeling very good, with the results that I really thought I would have after TAR. I am heading out on a month long international trip that I could have never made without it.

I think that it is a solution for some of us, but we will unfortunately possibly not hear that from the Dr.

 

[Mr_TalarCyst]

@LauraC. Thanks so much for sharing your experience. It is wonderful to hear about how this has enabled you to take on a wide range of activities without pain!

 

[LauraC]

Update again...I am 2 years out from TAR, and 1 year out from my wonderful Brace that has given me a lot of freedom...The bad news is that my ankle is now so bad (probably from effects of the angle of the TAR.) From the most recent evaluation, the ankle is about 13 degrees off on normal, Full leg Xray (as a result of my tibial malunion which was not accounted for with the prophesy software), and the TAR is also loose SPECT CT. Recommendation is to first straighten my lower limb, and then do a TAR revision. THIS IS A HUGE DECISION because I am still in love with my ExoSym brace, which gives me such incredible relief for a big part of the day. I am however, no longer able to walk longer distances ( 1+ mile) without pain, likely caused by the loosening of the TAR.

The need for a revision was not expected so soon (basically at 9 months post TAR), and the fact that the varus deformity of my tibia was not a disqualification from the initial surgery is pretty disheartening. Now I really need to first straighten in order to stand a chance of successful revision.

I will post again when i make my final decision, but know that I will not do anything until spring of 2023 if at all.

 

[Jaycey]

@LauraC So sorry you may be facing a revision. This ankle stuff can be tricky. I guess it's a toss up between wearing a brace and limited mobility or perhaps increased mobility and eventually no brace. Tough one!

Please keep us updated!

 

[Pumpkin]

LauraC,
Sorry to year you may need a revision and possible surgery to correct your Mal union fracture.
I also have a Mal union tibial fracture, and may need a TAR or fusion in the future, I will be interested in how you proceed with your ankle.
Glad the EcoSym brace continues to provide relief.

 

[LauraC]

Th problem that is disheartening for me is that the TAR surgery is done using software that makes the calculations from the knee down to the ankle for the placement. I think the placement in my case was very good (for a straight leg). However, the deformity looks very small when looking that way, it is only if you do a full length leg Xray that you can see the true angle from the hip to the ankle, and in my case that throws the whole TAR off. In my case, they did not do that Xray until I complained of pain, and it has been measured at 13 degrees...pretty big.

I think that if they routinely did the full leg Xray before the TAR and saw the degree of curvature which may or may not have been somewhat different than13 degrees before TAR, I they would have said that the TAR protocol was not be suited for my ankle. That is only my guess, I am not an expert.

I think that the whole patient should be evaluated before recommending the surgery. If that had been done, I think that they may have recommended the straightening prior to the TAR for the best chance of success. I am not blaming, I understand the process, just a bit frustrated to be in this position. I just think that I might have gotten fusion, or just the ExoSym brace instead, if they had offered to straighten before the TAR, and been fine with the level of mobility that I was seeking. The straightening using the Taylor Spacial Frame really freaks me out.

 

[Georgiahiker]

I totally get your frustration but now it's where to from here. If you haven't already, I would consider consulting with other surgeons before proceeding.