I mentioned in a past post that I was applying for the exosym brace.
To get this brace I had to go see a surgeon and get a very specific prescription and letter written which we submitted to The Hanger Clinic in Gig Harbor Washington who then submitted it to my insurance company could then denied covering it. So now I have to appeal. The device costs $9,000 out of pocket. If you search YouTube you will find that this device looks very very promising for all of us who don’t want to get ankle Fusion but want to get back to a normal active lifestyle.
If my insurance company ultimately denies this I will pay for it out of pocket but it will take me some time to save up.
Does anybody out there have this brace yet?
Take care of you all and keep hopping on that Good Foot 🙂
This was all dictated on voice to text so pardon my typos and for some strange reason Google started capitalizing all kinds of random words lately 🙂
Pilon Fractures Suck! 
Thanks to the information from this group, I learned about the Exosym brace. I am headed down May 8th to the Hanger clinic for the first appointment.
It has been 2 years since my ankle implosion which I got from crashing into the boards at hockey. 2 surgeries with the second one putting in place 3 plates, 19 screws and a bunch of wire to cobble my ankle back together. Went hard at the physio and took a while to find someone who actually knew what to do versus the “we have done everything we can” attitude I encountered. Got back to playing golf and returned to the ice this past winter (one of the few activities I can do). My endurance has built up slowly but still will throb if I over do it.
I do a physio regime every morning to avoid the stiffness that sets in – heel lifts, calf raises, excercise band to stretch out my ankle.
I will be out of pocket in all likelihood for the brace as I am in Canada. If it progresses my mobility and quality of life back to where I have seen, then it will be well worth it.
I will check back in post clinic…
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Awesome I’m so glad to hear that you’re going to give this place a try. I have heard only good things. But I can’t tell if there’s twenty or a hundred or a thousand be braces already fitted. I get the feeling we’re at the very beginning of it
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Hi, Zach,
I’ve had an Exosym for several months now. It’s made a big difference. I’ll be heading back down to Hangar (Gig Harbor, WA) on Friday for adjustments. I was lucky that my insurance approved it. My wonderful Ortho wrote a letter to them, which likely helped. Since I have a high deductible plan, I still owed quite a chunk— but Hangar offers payment plans.
There is a Facebook page that the Hangar clinic manages— if you search for Exosym or Ideo you’ll find it. Good luck!
Ellen
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Awesome awesome awesome!
I need to get this approved!
🙂
Can you describe what walking, running, etc is like with and without the brace?
I’d like to know what I could expect too!
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Walking–without my device –is what my Hangar PT calls a “step-two”. Basically, I take a step and catch up on the next one. I’m very slow and and have moderate pain. Climbing stairs requires holding on to both sides (I’ve had double railings installed on stairways both at home & at work) and taking one step at a time. Stair climbing is perhaps where I notice the most change. With the Exosym, I can do stairs almost normally! You lean into the front of the device and it gives you power.
Walking is much better, generally. The device off-loads the injury and gives you power. I’ve been able to use the treadmill at Hangar (never thought I’d be able to do so again). It’s a process going in for adjustments and training— I’ve finished my 5 1:1’s that are included with the device— and am actually going to Hangar this Friday for an adjustment. (I developed a “Tailor’s Bunion” due to to the device not fitting properly, so am hopeful that this will do the trick.)
Ryan told me that I was the first person to be approved by my insurance company (Kaiser, formerly Group Health Collective). He had no idea why, but the idea is that insurance companies are realizing that’s it’s more cost effective for them to approve the Exosym (compared to fusion, or full- ankle replacement, etc.).
I’m sending you insurance “authorization” vibes! Keep me posted.
Best,
Ellen
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Oh! That’s wonderful news! I crushed my ankle in a fall from a ladder in 2016 and am this very moment on my back with my ankle elevated just to cope with chronic pain. I, too, have Kaiser, and I have an appointment Thursday to get a referral to Ryan at the Gig Harbor clinic. I hope the best for you and me both!
I’m a teacher, and I use a crutch to walk from the handicap parking stall into my classroom, but after that, the pain is just too much, so roll around in my wheelchair. It’s super hard to teach a crowded classroom of 7th graders from a wheelchair. I’m hoping ExoSym will help me, and hoping Kaiser will pay.
Best of luck!
Jen Ainoa
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I’m all booked for the Hanger Clinic. I’ll be there May 17-19 for my first set of appointments, then again June 13-17 for my second set of appointments. Right now all out of pocket….couldnt wait on workers comp any longer. I’m gonna submit all of my expenses to my lawyer when all is said and done, and hopefully will be re-imbursed. I will keep you updated on how it goes.
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Yes!!! I love it!
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Hi Ryan how has the exosym experience been for you? How long have you had it and what are the benefits and are there any things you thought it would help with that it’s not? On the YouTube video they show people running and I’m wondering if that’s something you’ve been able to do or if that’s not the results everybody can expect?
Sorry for the horribly worded post here I’m voice to texting while on the Move 🙂
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I’m in Gig Harbor right now, packing to go home after my first visit. I tried on the plastic prototype yesterday.
I was in a car crash and incurred a pilon fracture of my left leg. The surgeon says the bones healed, but there is no more cartiage. I cannot walk any distance at all without pain. Ryan seems to feel that I am a good candidate; I will be back in three weeks to get the final version.
The plastic prototype was produced from a cast of my leg. When one adjustment where it rubbed was corrected I walked around and around the room, I think just to locate any further places where the fit wasn’t right.. It was a remarkable feeling, because it didn’t hurt. At all. The plastic cast felt clumsy but the pain was gone. I can’t tell you why.
The final device of course will be much more complicated. I met a few people who had the final version and they were all excited and delighted. I’ll keep you posted.
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Awesome! I’m getting on their schedule for October November! And putting it on my credit card and I’ll figure it out from there!!
Please keep sharing your experience with the process! I’m really excited to see how this is exosym movement is growing! We must have three or four people by now who’ve gotten it since I started this blog
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I don’t know your economic circumstances but if money isn’t to improve your health what is it for? What good is it? What else can compare to that? I went to Hawaii last year but didn’t enjoy it much because my leg hurt so badly, I couldn’t enjoy the beach or much of anything. I’d rather stay home, eat beans and be well!
And I was thinking….I think they could charge a lot more for this device, and get it. Look at all the time everyone spends on each case, all that skill. They’ve really made an effort to keep the cost down. And I haven’t paid anything yet. They do let you try it out before they ask for money. I bet no one walks off!
I’ll keep everyone here posted. Looking forward with hope.
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“I bet no one walks off”
There’s a great unintended pun drycamp!
I am a person who also feels that the money, however hard it is to earn, it still waaay worth it if it restores walking, working, and adventuring.
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Unintended. I do it all the time, which amuses my family, most of whom are on the autism spectrum, very much. They do it all the time, deliberately (it’s one of the markers of the condition), and they think it’s hilariously funny that I do it and don’t hear it. This is a good one, better than my usual. 🙂
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Anyone want to try moving comments in this blog to a private facebook group? I called it Pilon Fractures Suck
https://www.facebook.com/groups/126072184709967/
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I agree! Chronic pain makes you feel so lazy. When your brain tells you not to walk because it hurts so bad, you seriously just sit on the couch and eat beans! And I live in Hawaii!!
You get that ExoSym and get back over here. Can ExoSym go in the ocean? How does it do on sand?
Thanks for your post. Cool to hear from someone whose like me.
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as I posted a couple of weeks ago – it is a life changer. I was still skeptical after the prototype – but when I got the “real” thing I was blown away with the increase in my functionality and most importantly the lack of pain.
Get going to the gym your abs and gluts are in for a serious workout….as you probably heard its a journey to get to the fill functionality that the device offers…
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Anyone want to try moving comments in this blog to a private facebook group? I called it Pilon Fractures Suck
https://www.facebook.com/groups/126072184709967/
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Hello All, I have been speaking to the folks at Hangar and am trying to work out the dollars to pay for the exosym. My big concern if weight loss and how much before you “may” need a new brace. I am guessing that if you can be back to being normal and increased activity this could be a concern for some. Does anyone share this concern?
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Hi my orthopedic surgeon looked into this brace for me. I was bummed to find out it was 9,000 and that most insurance companies don’t cover it.
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I know this post is old but I have the IDEO brace from Brooks Army Medical center and I love it. Life changing and almost pain free filth my ankle and drop foot. I had no clue it was $9,000 bucks. Wow. We are issued two incase one breaks. Maybe that’s why.
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I’m going to VA for my fitting this Friday. It’s been a long time since I was able to DO things. Three years since I’ve walked recreationally. I can’t even guess at how long activity has been diminishing. Well, 20+ years, since I was in the Army getting wrecked. I’m fat, now, and was pleased to see some other chubs in videos about the thing. I’m curious to see if anyone else had gotten one through VA, and if they do the PT associated with the brace?
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Hi I read your story and have the same issues…In 96 I had an open fracture of the tibia and shattered my fibula from a fall…over the years the pain from the arthritis has gotten almost unbearable. I have Kaiser insurance but they don’t cover the Exosym..your story has inspired my to try the same thing..thank you for sharing. Hope the best works out for you.
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I’m headed from PA to Hanger in Gig Harbor on Oct. 22nd. I have all of my appointments scheduled and hoping for the best ExoSym experience. Thank you, all, for sharing your stories!
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I have the brace and just got fitted 3D by True Hockey to custom make a skate that fits my device. It’s a must have if you have had a pilon fracture and had your ankle fused. I am 3 years to the day post fracture and just getting back to normal lifestyle. Best of luck to you.
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