Thursday, September 29, 2011

Response to Your Comments

First, you'll notice I've switched back to the original blog design I made last year. The new stuff just isn't ready.

I wanted to take some time to respond to some comments people have made.
Dear expert snowboarder, I'm also thinking about the distraction surgery. I fractured my talus 5 years ago and I recently had my achilles tendon lengthened in hopes that it would allow for more ROM,but instead I just have horrible arthritis pain and I limp constantly. Thank you for your blog! I also have been blogging about my really helps knowing that you aren't alone. Keep up the good work!
Thanks for the awesome feedback! I think ankle distraction arthroplasty could definitely buy you some time, but from what I understand, we're on the clock once the ex-fix is removed. I'd ask your surgeon what to expect 5, 10, and 20 years from now. I'd also discuss other salvage options, like replacement and fusion, if your bone quality is good and you're at the right age. I believe I've got an earlier post of a few long videos on the current medial treatment protocols for ankle arthritis.

My surgeon, Dr. Jeng, suggested that almost all patients develop arthritis again at some point after this procedure. However, some patients may not have nearly as much pain for the rest of their lives. From what I understand, this is a relatively new procedure, especially in the United States, so there isn't much data out there on patient outcomes. My surgeon said he sees about a 30% to 40% success rate in terms of pain reduction after an ankle distraction arthroplasty.

I think age comes into play here as well. I'm only 29 and my wife and I have not started a family. We want to minimize surgeries and minimize pain so we can get on our with lives. We decided several months ago to get an amputation at some point and, fortunately, our surgeon agrees that I'm a good candidate for one.

Because of the severity of the initial injury and the complications I ran into (infections, non-unions, etc.), salvage options like an ankle fusion or replacement are more likely to fail and require more revision surgeries on my ankle. A fusion also reduces your range of motion, causing stress on the adjacent joints. Not only am I too young for these options, my tibia bone is in rough shape, indicating that these salvage options put me at a higher risk of failures and revision surgeries.

Good luck to you. Stay in touch and feel free to ask any other questions.
Hey there... Thanks so much for your blog. Here's my story -- Tib/Fib break jumping off a pier in 2001 when I was 17. Four surgeries later and my doc says I have the ankle of an 80 year old. She said she would recommend I have a fusion if I wasn't so young. My pain is pretty under control (I can function most days) but I have really limited ROM. Like between 3 and 5 degrees passive dorsiflexion and 10 or 15 degrees active plantar flexion. The new doc I just saw today said that he would recommend distraction arthroplasty (that's how I found your blog -- journal articles are a bit dry and don't convey some of the important recovery bits). I have read that DA is for folks with decent ROM. What was your ROM before the surgery? I am wondering if I have enough ROM to be a good candidate. I am also struggling with the idea of a long recovery since I'm in the midst of a doctoral program. Any advice/info? PLEASE keep posting! Kate
I also read that ROM needed to be very good. At my high point in March, I hit 11 degrees dorsiflexion. However, when I saw Dr. Jeng at Mercy, there's no way I was more than 5 degrees. I think Dr. Jeng moved the universal joints around so that I could get more plantarflexion out of my movement.

Since I'm quickly moving into year two of this recovery, I know exactly what you're afraid of. I quickly got into "crutching shape," so I could fly around and keep up my endurance. I also kept my wheelchair rental for the entire duration of this recovery for going out to events and parties where I know it'll be hard to find a place to sit down and prop up my leg.

The second thing that is important is having friends in the workplace or on campus to give you rides. I rely on several friends to get to work since my right ankle is in the external fixator. You might be able to drive around if it's your left ankle. I tried to show my wife that I could drive with my left foot, but she shot me down!

The third thing that's helped me, above all else, is my wife. She's picked up the slack on everything I've been unable to do, and without her, there's no way I could have survived the recovery at this point.

It sounds like you might be a good candidate for ankle distraction if you're not having much pain right now. Also remember that you can walk on it. I was out of work for about three weeks, but that was because we did a very poor job coordinating pain management ahead of time with our surgical team.

If you get the surgery, work with your surgical team to get all of your pain management ordered ahead of time. Definitely get a PCA. Get Dilaudid bolus on order for when you're taken off the PCA and get the oral pain meds ordered as well. Overdo it like crazy so you don't have to fight with nurses to call doctors late at night to get an order or approval. We did this for my second exfix last year, and because my pain was so well managed, I was able to return to work within about two weeks. Once your pain is under control, you're allowed to leave the hospital. This seems like the best way to guarantee your hospital stay is short.

With that said, this exfix was definitely more painful than my second one last year. The tension placed on the joint is hardcore, so that might have contributed to my slower return to work. Also, I struggle with pain every night after walking on it all day at work. The combination of walking around to meetings eight hours a day and not propping it up to prevent edema probably contributes to all of my pain. I take Percocet at night to help with that pain.

If you've never had an external fixator, I also recommend Valium. When your muscles atrophy, they'll spasm. You'll sometimes get a, "slamming the brake," spasm in your foot, and if your ex-fix isn't open, that'll hurt. Valium helps with this quite a bit.

I also recommend you meet or talk to a physical therapist to get a few exercises down that you can do with the ex-fix to do your best at addressing atrophy. Try emailing the physical therapist I used at C.O.R.E. Physical Therapy, Kim Stepien, here in DC. Just say Tony referred you and ask for a few examples of things you can do while you're in the ex-fix.

Do you have digital copies of your X-Rays? Are they in dicom format? If so, you can use free PAX tools to measure the distance in your joint. The more space you've got, the more I'd recommend you get the procedure. Keep in mind, though, that I'm not a doctor. Just a computer scientist. If you get stuck, I don't mind taking them and measuring the distance for you. Your surgeon, though, might be able to do this for you.

I hope everything goes well! Please keep us updated on how things go and, as always, if you have any other questions, just comment away and I'll get back to you.
Tony, I'm a 39 year old male and I currently have an ex-fix on my ankle as well since 8/11/11. The day after surgery I was able to stand on it and walk with it. I take Vicodin for the pain, no real probs for the first 2 weeks but once I started making the adjustments it got more difficult to walk around because of the pain. It is difficult to sleep at night but I find that hanging my leg off the bed helps me sleep for a few hours before I have to readjust again. Although it has been a challange I am optimistic that I will get good results and pray for the best. I hope that you are able to recover and get back on a board, because my passion is in cycling and it has me sidelined since the surgery. Keeping you in my prayers.
Thank you so much for keeping us in your prayers. I'd talk to your family physician about getting a drug called Flexeril. I ended up doing this when we thought the Valium I was taking was causing my four-day hiccup binge (turns out it was probably just the combination of all of the drugs plus the way I was sitting). This is a hard core muscle relaxer that is guaranteed to help you sleep for at least eight hours. Buy a pill cutter in case it's too much. I highly recommend this if you're having problems sleep.

I also learned to sleep on my back when I had my initial accident. Propping it up on one or two pillows helps, as well. I like to sleep on my left side occasionally, so I'll also occasionally put a pillow below my right knee.

I'm also hoping to return to cycling as soon as this ex-fix is removed. Snowboarding is the end goal, but cycling was something I got into a few weeks before my arthritis got to the point of forcing me to get this surgery.

Good luck to all of you and please stay in touch to let us know how everything goes. We're a tiny community, I imagine, but we can learn from each other. I started this blog to just keep my friends and family up to date, but I'm beyond ecstatic to see that we can use this blog to communicate with one another and help each other out.

The bottom line for all of you is find the right surgeon. I've had three so far. For this fourth surgery, I talked to three surgeons. In fact, Dr. Jeng's first words to me were, "so I'm the tie breaker?"

Credentials matter, but patient interaction is more important. Does your surgeon feel rushed when he sees you? That's a bad sign. Does he stick around until you're done asking questions? That's a great sign. This idea was the reason I switched to Dr. Jeng at Mercy in Baltimore. When I first met him, I felt like he came into work that day only to see me and my ankle.

His awesome attitude is what led him to working with me on my infection last week through email, Picasa, and YouTube only -- no visits! Every day, including weekends, I was sending him high resolution video and picture updates, and Dr. Jeng was emailing me ideas, thoughts, and instructions every day.

Again, good luck to all of you. Let's stay in touch. If you want, let me know who your surgeons are and I can speak to Dr. Jeng about them. He and his clinic at Mercy seem to be fairly popular on the East Coast, so I'll be more than happy to ask him about his thoughts on your doctors. He told me that one of the surgeons I had seen was insane for recommending an ankle replacement, so he's definitely going to be honest.

The bottom line is to stay positive and keep a good attitude. Some days it comes naturally, and some days you have to force it. Lean on your friends, force yourself to go out, and talk to people about how you're feeling.

I'm all ears.


  1. Hey Tony:

    Thanks so much for addressing my comment. So here is additional info -- I have seen my x-rays (don't have digital copies of the most recent ones yet) and while I haven't actually measured the joint space in mm, I'm pretty much bone-on-bone. Like the low point of the tibia, to my eye, looks like it's touching the high point of the talus. Stark contrast from my 6-months-post-break x-rays. So, joint space is probably close to nil.

    Never been in an ExFix, so that does concern me a bit. What is a PCA? How long was your hospital stay? I'm worried I should be getting this surgery soon since I'm 27 and my hubby and I are planning on kids in 2 or 3 years. Can't figure out whether this is supposed to be a surgery you do early or one that you save until you're almost ready for a fusion. FYI -- doc says I'm a good candidate for a fusion, probably not a replacement because of my activity level, and not for allografting because both the talus and tibia are cartilage poor.

    The local surgeon who recommended DA has only done 2. Based on my past experiences, I feel like sometimes it's not just the procedure, it's technique. So, a good surgeon who's done lots of DAs and knows how to finesse things is really important to me. I was considering the Hospital for Special Surgeries in NY originally, but after reading your blog, I think I'd be most comfortable with Dr. Jeng or someone at Mercy (the whole team looks pretty good). I live in Grand Rapids, MI, so I'd have to fly out for the surgery. I have a great PT, but he's never worked with a DA patient before.

    So here is my big Q -- I have heard contrasting info about whether or not your should be weightbearing with the ExFix on. Some docs (including the one who recommended it to me) make it seem like you're totally non-WB for 3 months and the rest the joint gets is important. But others (and your experience) make it seem like WB is almost an essential part of the success of the procedure -- increased joint space + WB = cartilage growth. What's your take on this?


  2. Kate,

    Hopefully my post about preparing for life with an external fixator helped out some.

    A PCA stands for patient controlled analgesia -- basically, it's patient controlled pain medicine. I'll talk more about how important pain management is in my next post.

    I wish I could give you the right answer on whether you should do the ankle distraction. I don't think there is one.

    The good news is it doesn't burn any bridges. If you try it and it doesn't work, your other salvage options are still available.

    I like weight bearing primarily because it's easier to get around. Moreover, the way Dr. Jeng explains it, cartilage can be seen as a sponge, and the increased joint space, combined with squeezing and friction, help promote growth. But I'd dive into the literature and studies. I can start looking at more as well. It seems to me that if the joint is separated, then weight bearing on the surrounding pins and screws should still allow the joint surfaces to rest as if you weren't bearing weight at all. Perhaps you should ask if he will distract the ankle 5mm all at once or slowly over time? That might make a difference. I was distracted the entire 5mm during the surgery.

    It's probably a good idea to manage your expectations on this procedure. I'm actually not hoping or expecting to grow more cartilage. What I'm hoping for is some kind of reduction in pain while we prepare for an elective amputation.

    In addition to that, this surgery was also important for me to have another surgeon verify arthroscopically that the tibia bone stock quality and history of non-unions suggested that I'd encounter uncountable revision surgeries for any other salvage options, like a fusion or replacement. I'm just like you -- my wife and I are young (late 20's) and want to have kids soon.

    Dr. Jeng's explanation for ankle distraction arhtroplasty is that it's primarily used as a way to reduce pain. He's told me that he sees about a 30% to 40% success rate in patients that would recommend getting the procedure done again. In those patients, about 50% of their pain is reduced in the first year, and the remaining 50% is reduced over about five years. He always emphasizes patience is key to having success with this procedure.

    As you know, I'm not a doctor, but here's what I'd do if I were in your situation. I'd try the ankle distraction to see how much time that buys you. It doesn't burn any bridges and the risks are low (infection is the biggest concern). The more time you buy, the more time science has to get better at treating ankle arthritis.

    This means you'll probably end up getting a fusion surgery while in the middle of being a parent. So, yeah, you've got some tough decisions to make!

    No matter what, your husband will need to understand what you're both getting into. This is probably the most important piece of advice -- make sure your spouse understands how much it's going to suck with a gimpy partner. My wife is awesome, she's a nurse, and my injury is extremely stressful for her. Maid service, if you can afford it, can help reduce some of this. But we own a dog, and since my accident, she's probably walked her 98.9% of the time. Thank god she's understanding, but it hasn't always been easy. Just talk it out. Sometimes she just needs to vent about how much my ankle sucks.

    It's so true.

    I'll start working on a post about preparing for surgery this week. Since my wife is a nurse, I got very lucky to have a knowledgeable advocate. I'll try to help you come up with a list of questions and topics to discuss before you go in as well as how to handle certain situations during your short stay at the hospital.

  3. Wow. Thanks so much for your response, Tony. Perspective and experience are appreciated. Like you said, there aren't that many of us around, so connecting via the web is a good way to find community. :)

    I'll keep following your blog -- looking forward to the next post -- and am planning on delving more into the research literature. I think depending on what I find there, I may start looking into consults. Wondering if this is something I can afford to wait on (till pain increases and fusion seems a more immediate reality) or if I should get it done sooner than later to maximize potential benefits.

    Can't wait to see your documentation of getting the ExFix removed and hear about your recovery process!