I have ventured out without my Arizona brace a few times lately for a half hour or so. Today I’ve spent almost a full day with nothing but my 1 inch heel lifts in my shoes, and I have been feeling great! -im kind of afraid to be so hopeful, … what if things were to stay this way?! Im doubtful..
I have mentioned this in other posts that the way my arthritis is, it feels ok when I have my heels raised one or two inches in my shoes. (I even bought a pair of women’s tall-heel flip flops for walking around the house in.) I think this pain-frre walking has to do with the fact that I have a little bit of joint space and cartilage left at the rear of my ankle.
Anyway I wanted to post something positive 🙂 there’s been too much bad news on this site lately! 🙂
Great news, I understand where your coming from being excited when you have a pretty decent day, cautiously optimistic is how i refer to it. Im in the same boat as you man.
To stay with the positive vibes theme, I wanted to update you on my trip out to Gig Harbor, Washington and my Exosym journey. All I can say is WOW!!! This device has been literally life changing for me. Again, going out there I was cautiously optimistic as I did not want to set myself up for a huge disappointment. It’s been almost 2 weeks since I received it and I cannot describe the just how truly excited, joyful and blessed I feel to have found this amazing device. I almost feel like my old self again.
I knew as soon as I started walking in this thing that it had the chance to change my life. On the second day of training with it I was running (yes really running) almost full speed on a treadmill. If you would see me walking without the device, you would never believe I would be able to walk at a fast pace, let alone run at all. There wasn’t too much adjustment for me to get used to it, and I honestly feel like it is just a part of my body now (it’s been that comfortable for me).
Coming home from Washington I was able to walk through the airport (even passed people that were walking too slow for me) whereas previous trips I took after my accident I would use a knee scooter to get through the airport because there was just no way I could make that kind of trek comfortably on my feet. Since I’ve been home I’ve been tracking my steps and I have hit almost 13,000 steps on 3 days so far. I’ve been able to take walks with my wife, play in the backyard with my nephews, take care of all the yard work and tasks around the house, work out at the gym and even walk comfortably on the beach (with sneakers of course) all with very little to no ankle pain. Everything hurts EXCEPT my ankle.
Is it perfect? No, of course there are lifestyle adjustments you need to make and footwear issues that you need to figure out and curious looks and comments you need to deal with from those who don’t understand our situations, but to be able to take a full stride with no ankle pain again is still so unbelievable to me that I’m on cloud 9 and those little issues take a back seat to all the things this device has given me back.
I have severe post traumatic arthritis mainly in the front of my ankle, zero dorsiflexion, can’t stand barefoot with my feet next to each other, if memory serves me well, a lot of the same issues as you. I’m only passing this info on because I feel a responsibility to make people aware of something that has dramatically changed my outlook and given me new hope for an active, fulfilling future that I thought was completely lost after my accident. For me, it was the best decision I could have possibly made given my prognosis and treatment options (which basically were do nothing and live with the pain or ankle fusion).
Is there any way to post videos on the site? If so, I can post video of me running with the device. Any questions feel free to ask. Take care for now
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Amazing. Congratulations! Very happy for you.
Because, do you know what else is amazing? If you google ‘exosym pilon fracture’ your posts are the only things you will find! Lmao
This amazing, life-altering device that can possibly give us back so much of our life is currently being talked about by ryan and only ryan. No doctors. No surgeons. No therapists. No articles. No studies. Just Ryan.
I did some quick math: the only figure I could find for the annual occurrence of pilon fractures was 4.4 out of every 100,000 individuals. Given the US population of 321.4million that means that only 730 people per year have this problem but since scientists and doctors have left Ryan as the one guy on earth to tell people about this, he’s gonna be busy. lol
Ok, I overdid it. But you get my point lol
Lol, well we can thank Zach for starting this blog for that matter. Without someone like him to start this, our voices and stories would be kept silent. These pilon fractures are horrible injuries to say the least, and very rare, so we all can benefit from each others experiences. I know I had to do my own research to find a life changing device for myself, so if one person can benefit from me telling my story and what has helped me, that makes me a happy man. It really has been life changing. I’m grateful I can spread the news. I’d be more than happy to share any of my experiences with anyone who wants to know more about the Exosym.
Ryan, I can’t believe I missed this comment from June. this blog comment format is a little bit maddening! But I don’t know how to build it any different:-) I was never a blogger in my life before this.
Your results from the exosym sound just like what I had seen in the YouTube videos. I can’t believe running is a possibility!
I don’t think there’s a way to post videos on the site but I think you could make a YouTube video and then share the link here.
Thanks for getting yourself to Gig Harbor for the rest of us:-) there’s just a lot of hope that comes from your story!!
I will work on getting the video up for sure. I am 2 months into this device and I’m telling you it is simply amazing. Just went camping/hiking in AZ and I was out hiking people with 2 good legs. People kept saying I can’t believe your hiking with that boot on, lol. When I told them the story, they were simply amazed by the device. It truly has given me my life back.
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Hi Ryan – This is Beth Shaver. I’m an ExoSym patient of Ryan’s myself and I write the ExoSymplyAmazing blog. 🙂 Would you be interested in sharing your story on my blog? Let me know & I can send you an email to chat further. So happy you are doing well in the device! #teamexosym #nevergiveup
Hi Beth, pretty excited that you’ve contributed a comment to our string here. I’m sure I can find this information on your blog, but it seems easy enough to ask right now, what are the limitations of footwear? I used to race bikes a lot and currently I have a hard time fitting my bicycle shoes on because my orthosis is so big and fat.
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hi zach! 🙂 no worries, happy to answer. i cycle in my exosym – it fits into my clip on shoes. the only limitation is sizing. have to go up a size or two on the exosym side so that the device fits into the shoe. i’ll find a pic and see if i can post it here so you can see.
Thanks Beth! Can a person walk a short distance “barefoot” in this, say like to make a trip to the bathroom, or does it require putting a shoe on?
hi nick, i think that really depends on the person & their injury/situation. some people need it all the time for any weight bearing activities and others do not. just really depends on your situation and how you feel. hope that helps!
Thanks! The device is going to cost me $9k not including travel. About how costly was the trips to gig harbor, car, and lodging?
it’s hard to say, but i would factor in about two round trips with a couple days for the first trip and about a week for the next. you can rent a car or use a cab/shuttle to get to gig harbor from the airport & if you are looking to save money i’d suggest air b&b for options or the best western wesley inn has discounts for patients and is within walking distance to the clinic (it’s my favorite place to stay!)
We have been in contact already through Facebook. You have used my pics on Instagram as well. I am certainly interested in sharing. Hope to hear from you soon.
oops so sorry ryan! didn’t realize this was you! 🙂
lol, no problem!! i get around in my new ex!!
Great news Zach! I have been trying kiensiology tape and have been having pretty good luck with it. I also have a copper sleeve that I like-these are just for everyday use (I’m a corporate accountant so office work). I also have a DonJoy Pod brace that I use on weekends, walks, yard work etc. I think my biggest obstacle right now (8 months post accident) is the fear that I’ll break it again. Anyone else out there struggle with the fears more than the pain?
Hi always worried that I’m going to break it again. I walk so carefully down stairs and on uneven ground!
What it feels like in my bones is that if I made a mistake I probably break my tibia halfway between my ankle and my knee where the Hardware ends.
I wish you would write more stuff on this site because so little is on the web where people talk about their own personal battles with these pilon fractures.
I share so many of your thoughts and feelings.it’s almost like listening to myself.
I’m from Manchester ,ENGLAND UK
11 months ago I was working on a building and managed to fall in the standing position from a height of 20 feet.
My LEFT HEEL sustained a severe comminuted fracture .
My LEFT ankle partial cartilage damage.
MY RIGHT PLAFOND TIBIA WAS COMMINUTED into between 100 – 200 fragments with complete cartilage destruction.
I spent 4 months in a wheelchair because I was non weight bearing on both legs.
My injury was complex with a lot of soft tissue damage and combined with the fact that
NO pin or plate in the world was able to hold the fragments in place the only solution was to spend 5 months in an Ilizarov frame.
That fixed the bones but because I had severe nerve damage (i had zero feeling in my right foot for 6 months) The surgeon is making me wait until 18 months post accident before any more surgery in order for my nerve situation to resolve itself.
I too have zero joint space and zero dorsiflexion so I just can not walk good at all.I have serious pain and swelling and the stiffness is so rapid it can sieze up in less than 5 minutes after sitting down.
My left heel and ankle also cause me balance issues and pain.
Most people who see me walk in public look at me as though I am DRUNK.
My surgeon has told me that only an injury can cause arthritis to be this bad,normal arthritis could never get to the level of this,it is 100% bone on bone.
It seems that ankle fusion will be done when my nerves have recovered and so far I am just waiting on the big toe feeling to come back.
The good news is I just got some feeling back in the last week or so.
I think that I will just go straight in and have the fusion done.I don’t think any other surgery is gonna take the pain away and even if surgery improves motion I don’t see the point if I’m gonna be in agony with this arthritis.
When I first got injured and my surgeon said your gonna have arthritis in your left ankle a little bit but worse in your right ankle….I thought no problem.. what’s a bit of arthritis to a tough guy like me…………..how wrong was I ?
THE truth is I don’t have a good leg to stand on.
I have only just accepted that I will never be the same but at least I am 49 and some of the lads at rehab are only 20/25 years old and I feel sorry for them guys
I can empathize with your situation. My injury as a whole was not nearly as bad as yours (I only injured one ankle), but I was immediately left with severe bone on bone arthritis. Very limited motion, and the motion I do have is not comfortable at all. I thought the same thing when the doc told me I have arthritis. I thought, oh well, no big deal, I can deal with a little pain. Boy was I wrong. It’s not the pain that does ya in, it’s the fact that I’m debilitated because of the loss of function in my ankle.
Saying all of this, I urge you to look into the Exosym Kinetic Orthosis offered by The Hanger Clinic in Gig Harbor Washington (I know it’s quite a ways for you). It has saved a lot of people from amputation and further surgeries, while giving them back quality of life and functionality. I just received this device 2 1/2 weeks ago and it has really been life changing. I can walk with no ankle pain. I can’t say enough about it. They had me running on a treadmill the 2nd day I had the device. It was made for severe injuries like ours when there is really no good option to get us back to functioning normally. I’ll leave a couple links that helped me with my decision so you can start your own research. There’s also a facebook page (just search exosym while of Facebook) that’s loaded with so much information and inspiration from people who actually wear the device. Best of luck with everything and just know it will get better. Never give up.
Thank you Ryan
I will look into this
Funny you have the same name as my eldest son
Lee, holy cow!! Im sorry to say but i think you win the worst injury award.
I don’t even know where to begin wrapping my head around what you were going through. Thank you for sharing your story on our site here.
I’m very hopeful that the other contributors to this blog will have some good words for you to help you get along with the road ahead!
20 feet! (Shaking my head in horror). I have flashbacks of my fall all the time. It was a long fall… plenty of time to comprehend what the landing was going to feel like..
Thanks for that
I wasn’t looking for that worst injury award and I think as a rule they all suck for all of us.
I never really thought 20 feet or 6.6 yards was a long drop but I suppose the speed and impact of that drop combined with 80kg of body weight in the standing position and a solid concrete floor was pretty much a bad recipe.
My surgeon deals with many suicide jumpers and he says I was lucky, at that height he expected the femur,pelvis and spine to be involved and not just the tibial plafond.
I am lucky with flashbacks because I only remember the start of the fall and nothing until landing.
When I landed i was in complete denial and shock……No way did that just happen man.
I just lay on the floor thinking this swelling and deformed ankle business was nothing but a bad sprain.I tried to stand up twice and even took my work boots and socks off, moving my now badly deformed ankle in the process………i suppose adrenaline give you some kinda strength but after 30 minutes I started to shake and the pain kicked in out came my phone and the ambulance came and rescued
But my mother was terminally ill at the time of my fall and I was her only son so being in a wheelchair when your mum is in the last few months of life suffering a slow painful death from cancer was the hardest thing to deal with
Take and enjoy every day
you remind me of this…as soon as I hit the ground I went into total denial that I was hurt and figured that this was going to be a sprain that just was going to take a minute to walk off. And then I looked at my leg and I was completely dumbfounded. I had a fat crooked ankle and I seriously thought I was dreaming and I just needed to wake up from this bad dream. Thing is as I do have dreams pretty often where I get hurt or get into some sort of really bad situation and I wake up with that total relief of thank God that was just imagination. I was very heartbroken when I could not wake up from this bad dream.
I’m really glad you didn’t hurt your pelvis or your back. 20 ft to a concrete floor makes me think “bad bad bad!!!”.
My surgeon mentioned she worked on suicide jumpers that survived, and she got lots of practice on injuries like this.
She also told me she was fixing up a meth head who jumped out of a second story window to run from the cops and broke both of his tibia. She did not seem sympathetic to his situation at all. In fact, where I broke my leg is a very methamphetamine heavy part of California and she said she works on a lot of people who were not respectful of their health or their bodies and made dumb decisions that ended them up in the Orthopedic Trauma Ward. She told me she was very sad for me because I was seemingly a put together person who is trying to do good in life and it was sad to see a good person get hurt so bad. I guess they become pretty jaded when they deal with lots of tweakers who jump out of moving vehicles Etc.
It is amazing that we are thousands of miles away yet our experience is so similar.
Indeed when i was in hospital the guy in the next bed had threw himself in front of a car travelling at 70 mph,,,another guy had jumped off a motorway bridge (highway bridge in America ? ) and another guy had serious drug issues and through himself out of a 3 story building and that’s not to mention the girl who had through herself off a 20 foot wall all in a bid to end it all.
So indeed i was the only one who had had a genuine accident but I still made friends with all of them , we all had the horror of living with a cage (ilizarov frame) on our legs so we connected and i always have empathy with people because life is very random and some people are just not able to cope with things and although they all tried to kill themselves i see that as an illness and i was proud that our system here in England takes great care of us all and it is free of charge……..it might not always be perfect but every person in England gets free health care whatever your situation.
My surgeon is from SYRIA in the middle east , he is a man of immense compassion and he would always show great sympathy with any person with an injury no matter how it was caused,in fact he spends his spare time operating on bomb victims in his home country free of charge but would be equally happy to fix up a suicide jumper..
At least I went to work and came home even if it was in a wheelchair for a while.
Some kids in Syria go to school and don’t get to come home……..We are the lucky ones,,,,,,,,, even if we are a bit unlucky ,,,,,,,all i want is to be able to walk goodish without bad,bad pain
I think with this injury it is the uncertainty of the final outcome that gets me down,you go from leading a normal life to having to make lots of adaptions and chronic pain is not just difficult for yourself to deal with it always wears your family down too,,,I no longer moan about my pain ,i just get on with it , I just hope this fusion can make the pain go and then I know i can really move on but boy do I need to improve my walking because it looks so fuckin’ bad man
Take care and keep your compassion for all of mankind
Paul was a good man with a great heart
He was living on the streets without a home and had no money
He had split up with his wife
She stopped in from seeing his kids
He was an alcoholic
He was a drug user
He had spent lots of time in jail
He was a thief
He thew himself in front of a car on the highway
He was a total loser
He was in the bed next to me in orthopedic trauma for 15 days
He was my Saviour
Strange just how much Paul the homeless drug addict helped me in so many ways yet before this accident I might not have given him the time of day.
Thank you Paul
And than you for your website Zach…………great guys
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It’s amazing! when we get knocked off our pedestal in life, and are left lying on the ground spiritually crushed, that we can see that some of the most “broken” people around us are actually gurus in rags!
I’m really happy to read your comment. Attitudes and perspectives like this are what I believe allows us to persevere. I can think of myself as an unlucky victim or I can think of myself as somebody who’s failed to receive the message in the past and the message Bearer needed to get my attention anymore blunt way. And what is the lesson? Well I don’t exactly know, but it feels something like life is no accident, it’s a gift, and life is not just adrenaline-seeking or adventuring or athletics… Life is also the finer details of love and friendship and community and teaching and mentoring others. I feel like I’ve always lived an out of balance life constantly focusing on what’s the next exciting thing I can do.
Whatever it was that inspired me to and you by yourself I may have been trying to get me to cut the crap and start getting serious about living and serious about my role in my family.
How long were you on lovenox shots?
I’m not sure if that question was directed at me? But I took 20 days of blood thinner shots after my surgery. My wife gave them to me at home. many people seem to get blood clots from ankle surgeries and I’m glad that I took these shots.
Other people I talked to did not get this prescription for take-home blood thinner shots and I wonder if some doctors are just more paranoid about blood clots than others.
I took mine for a couple months after surgery. I gave them to myself in the stomach.