Well I finally completed something major. I went through the procedure and got myself the ExoSym device in Gig Harbor Washington at The Hanger Clinic. There are Hanger Clinic locations all around the country apparently but the only Clinic that is fabricating the ExoSym is the one located in Gig Harbor and I’ll have to say it’s a fantastic clinic in a fantastic town and it was worth the time and the expense without question to get fitted for this device.
Check out more on our Facebook page by going to Facebook and searching for the group called “Pilon fractures suck”
Below are some videos that I took in the clinic doing some Dynamic movement that I could not do without this amazing device. 7 days ago I could not jump or run and today I can do it pain free. No gimmicks just kick ass science.
Thanks Ryan Blanc and team!!
Hello. Found your blog doing a google search for Exosym (hoping to find some emerging availability on the East Coast). While feel fortunate my hardware is long gone, here to report Maisonneuve fractures suck in their own right. I am 10 years out, making due with a somewhat settled end stage ankle (zero joint space – biomechanics have shifted to scarring the shit out of my talus). Also have a permanent non union of my fib. It may be non-weight bearing, but it is still subject to all the tendon & muscle activity going on around it. Soft tissue screaming up to my knee has led to btk amputation dreams and they do not upset me.
By all accounts, the ankle joint has been too deformed from the get go to make joint replacement a viable option. I really should have had a fusion 3 years after the fracture. A cheilectomy to remove bone spurs and scar tissue destabilized things, and traumatic arthritis applies to the trauma of surgery. The critical limiting concern is general anesthesia; I had career ending cognitive problems with the surgery to remove orif hardware. As a mom with two adopted kids, I have been slogging along as is, unwilling to risk anesthesia complications, at least until someone can sort out what that’s about for me medically. General and local anesthesia seem to be problematic now, including for dental work. Still not sure about that. It matters because I could conceivably have a fusion done with a local MAC and spinal block; I tolerated that approach well enough for the joint clean out but something seems to have changed involving lidocaine, and it does not seem to be a drug allergy.
I’ve looked into the Exosym. It’s difficult to know what the process and cost will be, including maintenance/adjustments. That’s a lot of travel from Maine. I had my Arizona brace for 6 months and stopped tolerating it. I cannot tolerate my orthotics anymore as my gait has shifted. I do ok generally on flat ground and some days walk at a pretty good clip without a limp. Soft tissue, though, cannot handle the shearing stresses of uneven ground, yard work with weight involved. Shoe changes with seasons wreck me for weeks. I have all the self-care gear – neoprene ice pack, wedges, pacesetter pneumatic boot, arizona boot(rip), soft brace, medical compression stocking, crutches, large bottles of advil …. I have a limited bank of ankle function. I can use it and recover, but it takes 3-7 days, esp in the summer time. I haven’t been able to run, swim laps like I used to, ride, hike, or stand on my leg all day. The most basic upright movement is fine; anything dynamic with bending, quick stops and starts, twists & turns, comes at high cost quickly. I start everyday walking down stairs like a toddler, one step at a time.
I do as much as I can, whenever I can, because I can; this isn’t a pity party. But at age 53, as a former athlete and generally active person, my quality of life is seriously clipped and I do not have the resources to chase the Exosym, not without having a clearer sense of what the long term costs might be, and knowing whether a fusion is a viable option medically, especially as a factor in increasing the odds of success with less maintenance with the Exosym. I did ask some of these questions of Gig Harbor by email a while ago; understandably, there’s no way for them to really engage around hypotheticals. I wish the network for making the civilian braces was more developed at this point.
Thanks for letting me share my non-pilo story.