Sharing our pilon fracture experience

This is my leg 2 months post surgery. The fibula was not repaired but it healed well anyway.

This is my leg 2 months post surgery. The fibula was not repaired but it healed well anyway.

On March 6th, 2015 I jumped from a bridge into a creek and found out the water was not as deep as I had estimated.

This is my story. I’d love it if you shared yours as well:

25 thoughts on “Sharing our pilon fracture experience

  1. Hi, Zach,

    I found your blog searching for Pilon Fx Recovery. I appreciate your story & blog and
    am wondering how your doing now.

    Here’s my story:

    On July 3rd 2015, I was hit by a car as a pedestrian.

    Basically, my tibia & fibula were shattered into ~15 pieces.
    I was taken by ambulance to Swedish Ballard (Seattle) where I was told I’d have surgery the next morning.

    My diagnosis?
    “Comminuted Tibial Pilon Fracture with Fibular Fracture”

    So, on the morning of July 4th, an External Fixator (a Medieval looking devise aptly named “Franken-foot” by a close friend) was attached to my right leg. I was hospitalized for 6 days in the Acute Osteo Unit. Painful, painful, painful. There were nights I felt like boiling water was being poured over my ankle. Finally, I stabilized enough to go home.

    On July 10th, I had a 7.5 hour surgery (ORIF) to basically rebuild my ankle. My talented surgeon used plates, pins and bone grafting to put me back together again. I stayed
    overnight and went home the next day to begin my recovery.

    I live alone, and my loving, close friends kept me out of a nursing home. The first six weeks someone was here around the clock.

    Began with in-house PT & OT to learn how to get around on a walker, wheelchair, and then a knee scooter. Had trouble with bone healing, so started with a Orthopak
    Bone Stimulator in November. I became PWB soon thereafter.

    Dorsiflexion is a major problem, and limited RoM,
    but I’m hopeful & willing to work hard…I know I still have a long road ahead. My hope is to return to the dancing I love
    (swing, waltz, modern square, contra, etc.)

    But, for now, I’ll be happy to learn to walk again.
    It’s been 5.5 months from my surgery and I’m still on a walker.
    My major fx lines “have not seen abundant bone growth in two months”.

    I had a CT last week and its results will put me at a crossroad. If CT shows enough
    bone growth I’ll start working hard in OP PT (they are still coming to the house, and there isn’t much I can do currently.) If not, I may need further bone grafting…

    Happy to have found your blog and will look forward
    to hearing more about your recovery.

    PS And, I used to think I had TSA hassles wearing cowboy boots…

    Like

    • Hi Ellen,

      Wow! You have been going through a lot! All I can say is that my attitude has become “take what I can get from the ankle and make it work for me” If you didn’t crush the chondrocytes then they may survive (and hopefully so will the cartilage). I had cartilage begin to dissolve after 6 months due to chondrocyte damage. It seems magical cartilage has 1 thing it can’t stand, and that is high impact. Maybe your injury will leave some cartilage intact. My injury (being a fall onto my feet) definitely had high impact.

      Write more any time. Good luck! and Thanks for sharing!!

      My depression has lessened, my mobility has increased with a Ariozna AFO brace and heel lift. It’s been a year this week and I am waiting for bone to become strong enough to take a ankle fusion. Ankle replacement is not for me because I am 40. They say its too short-lived and needs more surgery. From talking to others, I find surgery often leads to infection…and infection is a bad bad problem.

      Like

      • Can anyone share if when splint for pilon surgery was removed if you went into cast or boot . Which is better? When did you start pt? Any numbness?
        Thanks! I had surgery two weeks ago.

        Like

  2. Thanks for the info. i am currently looking for a pilon fracture specialist, if you have heard of on that would be great. Currently 8 months out from last surgery, and really not where everyone thinks i should be. The accident was motocross related, i cleared 58 of 60 feet! There are 4 plates and 16/18 screws. Still riding, very slowly!

    Like

    • The best guy in the sf bay area is Roger Mann. Definitely look for ankle-only types. Its a unique specialty and I believe only a few people really get into ankles and they do it for the challenge. Just my opinion.
      I used to mx. Thats a huge jump to case. I heard of a guy did this to both ankles in a land-to-flat jump. Thats no bueno!

      Like

  3. Hi thanks for sharing this I’m 3 months post pylon I was very discouraged till I saw your posts it’s so cool how you have adapted with bracing etc it also makes me realize that it takes time and I should be patient and that even if it doesn’t get back to “normal” i can still do things by compensating for injury I love how you show us how to make braces etc I hope to be up and active soon thanks for your encouragement and showing me the road to recovery like you said there’s not a lot of people that can explain to you the process so it’s really good to see somebody who’s gone through it thanks for taking the time to do this posting

    Like

  4. Good news. Had my first physical therapy session today. While my heel will still not touch the bottom of my boot, I am actually able to wear my boot now so that’s progress.

    Also, I have been upgraded to ‘toe-touch weaightbearing’ which means I can touch my toe down but just hard enough to crack an egg. There is not supposed to be any weight applied but the toe can touch. Seems confusing but whatever.

    My physical therapy didn’t hurt my ankle at all. It when I got home and tried some of it on my own, I seem to have done something wrong because I definitely am having pain in my ankle and up my shin. No more of that until after I get better instructions. I’m going twice each week.

    Keep hopping on that good leg,
    Nate

    Like

    • I remember how i had this awesome pt, then i moved only two months​ in and my new pt seemed clueless. Then someone told me about a better one and i made some real progress for a while. But then we could make no more progress and she sent me on my way. I wish i could do pt forever just to strengthen all the parts that still work. 🙂

      Good luck Nate!

      Like

  5. Hi! Came across this trying to find some other people who’ve dealt with similar situations. Guess I’ll add my story to the mix, although I have a blog going as well that gets a little more into the nitty-gritty “real life” aspect of things (and the feelings that go with it) here: http://breakalegstory.blogspot.com/
    Here’s the basic breakdown of things thus far:
    December 3, 2016 I am attending a dirt bike class that is supposedly designed for road racers. Long story short, another rider hits me on the outside coming into a corner, and he and I both crash, both people and both bikes rotating over my leg. Despite good motocross boots, my leg still got pile driven and I ended up with a tib/fib pilon.
    Went to ER, got x-rays, they sent me home (this pissed my ortho off at our first meeting that Monday).
    Fibula broke a butterfly shaped hunk off (that’s still floating in there). Tibia had a two full fractures (separated into 3 pieces) and some smaller fractures. In the time between the ER and meeting with my ortho, I also developed a fracture blister (had no idea then how much of an issue this would become).
    First surgery was December 11, 2016, second one was December 30, 2016 (needless to say my New Year’s 2017 was AWESOME – not).
    Things seemed to be progressing pretty well, the fracture blister sore (that had deroofed itself between my surgeries) was stubborn about healing, but eventually was healing over about the time I got released for weight bearing on March 15, 2017. At this point, it seemed like I was doing well and things were coming along.
    Then (fairly recently actually), about the time life almost started to sort-of resemble “normal with a limp” some tenderness and inflammation over the tibial plate turned out to be an infection – it manifested through the fracture blister location. All of a sudden I was back in surgery for a clean and debribement, to be sure the bone wasn’t involved, and labs. This was April 20, 2017.
    I’m now facing down 6 weeks of IV antibiotics and trying to live with a PICC line and not kill myself (or add to the problems). After that, they’ll give it two weeks to see if it re-manifests, and assuming it does, will likely schedule hardware removal (basically, at this point, they’re just trying to buy some time).
    I’m currently 5 months into this, and looking at a MINIMUM of another 3-4 months of drama before I can even focus on just moving past this. I’m beyond frustrated right now. Granted, at least I’m not dealing with a non or delayed union, and things ARE healing, but ffffff…this sucks!

    Like

    • Wow Aj!! Gnarly situation you’re in for sure…
      Im glad you found this site. I’ll be checking out yours too. Its all helping somehow, even if the help doesn’t seem to help much.
      🙂

      Like

      • Just figured I’d put in an update – completed my 6 weeks of IV antibiotics thankfully without any additional complications. I was able to keep riding and racing during this time, albeit not at the level I expect from myself. I completed the IV and moved to oral antibiotics just over a month ago, and will remain on those until I have my hardware removed (scheduled for Sept 26th). Doctor doesn’t foresee that being much of a lay-up other than the incision healing (guess things are looking good on the x-rays…).

        In the meantime, starting to use the leg a lot more. A trip to Italy (literally left the same day I got the PICC line removed) really helped break things loose and the leg seemed to turn a corner with all the hiking and walking. Now I’m back on a bicycle and working on getting my lost fitness back. Still can’t really run (other than some hobble-step runs) and jumping scares me (although I do some tiny hopping without issue) so I’m mostly building up to things slowly.

        Things still hurt, but it’s mostly muscles and tendons to be honest. Feels like a case of chronic, albeit mild, shin splints. ROM is okay, but still lacking, so I try to keep stretching it a little each day.

        Swelling and stiffness has been GREATLY reduced with the increased activity. I’m no a hobbling old lady first thing in the morning – if anything, that’s more likely to hit in the evening after I’ve sat down for awhile. Starting to get some shape back to the leg – still a looooong ways to go before it’s even clsoe to the other, but it at least looks like a (very skinny) leg now LOL.

        Like

  6. I was in a bad car accident on 3/6/17, my right leg was broken at both ends of tibia. I have a bicondylar tibia plateau fracture and a tibia plafond fracture and a fibula fracture. I had a huge fracture blister and severe swelling so I had an external fixator for 3 weeks prior to the surgery where I had 5 plates and over 30 screws and numerous rods inserted in my leg. It was a 5 hr surgery, he had to first rebuild the back of my ankle, then he went to my knee and then back down to the front of my ankle. He said it was the messiest he had ever seen. I am NWB even toes for a minimum of 16 weeks. I started physical therapy last week for ROM only. I am under strict orders to elevate 20 hrs a day due to swelling. I am losing my mind. I am glad to have found others that have the same injury.

    Like

    • This sounds very rough. I’m sending good thoughts your way. Our injuries were 3 days apart (mine was 03/03/17) and I’m weightbearing but with pain and crutches. Your situation is proof that someone always has it worse. Keep your patience on maximum and try to make the best of your down time.

      Keep hoppin’ on that good leg,
      Nate

      Like

      • I just started partial weight bearing 10-20 lbs. Because I have the tibia plateau fracture and the pilon, I guess my process is much slower. I am losing my mind. I have been homebound since March 6th and he said it will probably be November before I will be full weight bearing, How are you doing Nate?

        Like

        • I’m so sorry! The inactivity has made me cuckoo at times also. I keep pulling myself out of it when I realize I have no choice but that’s hard work, too. I have done a lot of introspection during this time. It’s just hard. Hang in there!

          Like

  7. I am 8 weeks post surgery for left trimalleolar pylon fracture. I started full weight bearing and “walking” 2 weeks ago. I find the stiffness and swelling to be the biggest problem for me. I do the PT religiously and I can walk fairly well after I do the “killer” stretches but within seconds of inactivity, I am so stiff again! The swelling is constant but gets puffer the more my left is dependent. Does this just slowly improve? I can’t see returning to work in 4 weeks since I personally see 20 primary care patients a day walking constantly.

    Like

    • Hi Terri!
      My goal is always to share my own experience. I know that everybody’s experience with this is very different. It has a lot to do with the severity of the injury and the doctor’s style.
      I believe I was non-weight-bearing about as long as you’re talking about, and the swelling and pain and stiffness definitely persisted for a while after that. I remember really trying to massage and dig my thumbs into the tight tendons with the hope of loosening everything up. My PT really thought I was just dealing with extremely tight tendons. But the truth of it is I had bone spurs that would not let the ankle have painless range of motion.

      I’m 2 years 4 months and 15 days from my accident and I’d say things are pretty great considering where I came from. The one year mark was also when a lot of the swelling was under control. But I could not walk in normal shoes or barefoot one year out.
      But lots of people have had much faster and better outcomes than me. And apparently there’s a bunch of positive stories on Instagram if you search #pilonfracture
      Thank you so much for contributing your experience to our blog!!

      Like

  8. On December 14, 2014 my husband had a mountain biking accident, resulting in him free falling from a 12 foot cliff. He landed on both feet, resulting in a clean break of the tibia & fibula in his right ankle (dislocated), a pilon fracture of the tibia & fibula of his left ankle and a broken left wrist. He had surgeries on December 15, December 17, December 23 & January 6, 2015 to insert 6 plates and 28 screws, and then in December 2015 had the hardware removed from his left ankle because it was causing pain. He went through close to a year of PT (he had to relearn to walk because he was non-weight bearing on his right leg for 8 weeks and a total of 12 weeks on his left leg.

    Now he’s 2 1/2 years out and he can walk with pain (but despite his surgeon’s expectations, without a cane or other assistance), bike (again with pain), hike (a few miles but not long trips like we used to take) and still has daily swelling and limited mobility in the left ankle (everything else healed nicely). He was told that where he is at 2 1/2 years is as good as it’s going to get and that he will have to undergo ankle fusion and/or replacement when the pain becomes too unbearable. Between the pain and lack of flexibility/mobility, he’s discouraged and moving toward hopelessness in how much he (and we as a family) has lost his ability to engage in our hobbies/passions together.

    I saw your reference to the Exo Sym brace and am starting to do some research on it but couldn’t figure out how it worked. Do you know if it provides more flexibility/mobility or only support for weak bone/muscle structure? We’re at a point that if it gave him the ability to walk/hike without pain, play soccer with the kids and possibly run a little, we’d find a way to pay for it if insurance denied so he could get some of his life back. But I’m not sure if this is something that could even help him or if this brace wouldn’t do much for his issue. We live in the Midwest so it would be a haul to get to the clinic on the west coast, though it would be well worth the effort if it would help.

    Like

    • Hi Suzanne! Oh man this is really a heavy duty injury for your husband to fo through! I can only imagine that extracting him from that location must have been a painful nightmare all by itself, not to mention the horror of immediately realizing what he’d done to his body.
      Hopelessness is a dangerous place.
      See if he can find any pictures and videos of the braces I’ve made for myself that allow me to ride bikes; even though it’s really painful to walk. And what i mean riding bikes is fast hard bumpy descents on a hardtail mountain bike. I’ve even raced a single speed cross country race since then and had no pain.

      If you YouTube the exosym ideo device you will see people running in it that couldn’t even walk before. That should answer your questions. It should allow biking hiking etc.

      Just for curiosity’s sake, where was your husband mountain biking?

      Like

      • The extraction wasn’t too bad once the fire dept. got there. He was fat biking on a peninsula, hit some ice and landed in about a foot of water in Lake Superior, which then helped keep everything “iced” (& the swelling initially under control) until they could get him into an ambulance. Luckily (looking on the bright side), the rescuers were able to walk down a more manageable hill several hundred feet away and then walk in the lake to get to him. And it was around 40 degrees so they were able to get him before hypothermia set in.

        I’ve watched your videos on your homemade braces and will check out the u-tube video to see if this might help. Thanks so much!

        Like

  9. So, I’m out of a cast and in an air cast, though I have still 5 weeks before being able to put weight on it, it feels great. Pain free actually, aside from the zings of nerves waking up. Because let’s face it, I pissed them off. Am doing some physical therapy on my own, just moving my ankle around to loosen things up. It feels great though. Good luck to all.

    David

    Like

    • That’s good news David. If you’re interested, all the Pilon fracture is over at our closed private Facebook group would love to hear about your progress updates. If you’re not on the group already, just search “Pilon fractures suck” on Facebook

      Like

  10. Pilom FX is a lot of suffering. It seems like there’s no ending of pain and pressure. It’s been five weeks, still bed rest as Nd depression kicks in. Anyone know how I can feel with this.

    Like

    • Hi Betty,
      Welcome to our little world of misery! Its definitely a horrible injury. I had such an awfully time getting out of the gloomy first few months. If you can read this blog for all its posts and comments, plus join us in the private Facebook group called ‘pilon fractures suck” you will read about many of our experiences with finding happiness after feeling miserable, depressed, horrified, and agonized.
      Folks in this group will get where you’re at. We get your day-to-day struggles, and we can share how we get on with things.
      Tips, tricks and sympathy… That’s what this group is all about!
      I was in bed a long long time. 4 weeks foot above heart, three months no driving, lots of pain. Lots of unknowns. I am happy now. I got happy after a while. It took time and it took work. I love my life again. Thank god.

      Like

Comment if you have an ankle fracture story to share

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s