Ankle-Foot Orthosis Brace

I had my ankle fused in 2008. My surgery was an "ankle" joint fusion. My recovery months were nearly pain-free. Then I started walking again. Initially, I felt wonderful. Like a miracle. But several months later, I was in pain again. I was frustrated. All the difficulty of surgery and recovery just to hurt again? I went back to my surgeon. Turns out, my "subtalar" joint was also failing, and needed to be fused as well. I have young children, and couldn't face the months of recovery right after I had just finished the last round. I need to drive, and to have my hands free to carry babies. I just wasn't ready to jump back into the wheelchair/knee scooter again so fast. So my doctor recommended that I try an AFO brace to help stabilize my ankle. He thought it might postpone the second fusion. He was right. Here is some information about my AFO:


The brace I wear is called an AFO brace (or technically, an "ankle-foot orthosis"). Here's a link to wikipedia, which has a paragraph or two on AFOs. Look partway down the page: http://en.wikipedia.org/wiki/Orthotics 

The AFO immobilizes the second joint in my ankle, and my pain is significantly decreased because of it. In fact, at my last appointment, he told me that the joint space is entirely gone, and that I'm walking bone-on-bone. But it doesn't bother me too much, day to day. If I decide to do something difficult, like spend 14 hours on my feet at Disneyland, then I pay for it the next day. But before my AFO, I would have spent the day at Disneyland in a wheelchair, instead of on my own two feet. Another advantage to wearing the AFO is that it super-helps with swelling. It goes from the ball of my foot, wraps around the back of my ankle/leg, and stops about 4 inches from my knee. (The wikipedia page has 2 pictures of AFOs...one is a cool rainbow-colored one. Mine is plain white.) But anyway, because it covers so much of my leg, and it's hard plastic, then it kind of acts like a pressure stocking. I have found that swelling directly contributes to my pain. The swelling puts extra pressure on the nerves, and by keeping the swelling down, it reduces pain. My AFO: 

The drawbacks to my AFO are few. First, they are expensive without insurance. I think mine was $700 before insurance paid. I ended up paying my deductible for it. Another minor complaint: I have to put it on nearly as soon as I wake up, and certainly before I walk very much around the house at all. I need it that much. So I only take it off to sleep. I wish I didn't need it on all the time, but I do. The biggest drawback, however, is that the brace is a bit bulky, and I have to wear 2 sizes of shoes to accommodate the brace. I wear a size 9 on my left foot, the uninjured one, but I wear a size 10 on my right with my AFO. So every time I buy shoes, I buy two pairs. It can be expensive. Also, because I can't roll through my step well, I usually wear rocker-bottom shoes (Skechers Shape-ups or MBT shoes, or Earth Shoes). I opt for the Shape Ups because I'd go poor buying two pairs of MBTs or Earth shoes all the time...they're too expensive. And finally, the other drawback is that wearing a brace draws attention to the fact that I have a disability. I don't like people to notice that anything is wrong, so especially in summer, in shorts, people are always asking "What did you do to your leg?". Just a small complaint, but still, a tiny bit annoying.

I've been able to postpone a second fusion for 4 (almost 5) years. I'm hoping I can go another 3 or 4 too. I've only had the one AFO for that whole time, and it's served me well. I think it's getting close to needing a tune-up...a size adjustment because of atrophy of my calf and ankle muscles, and new velcro straps.

If you continue to have ankle pain following a single-joint ankle fusion surgery, discuss with your doctor about the health of your remaining joint. And inquire about an AFO. I highly recommend it to anyone who continues to have pain after fusion. I really could not function without mine, unless I have another surgery. I don't want to go 3-4 more months of non-weight-bearing yet. My AFO has been a lifesaver.

The beginning, and in a way, a continuation

6 years ago, I posted a question on Askville, hoping to find information on ankle fusion. My question was "Has anyone ever had an Ankle Fusion/Ankle Fusion surgery?". I wanted personal information about ankle fusion, about what to expect, about the frustrations and experiences of people who had also been through this serious and somewhat scary procedure. It was hard to find personal stories about ankle fusion, even on our vast www, and I was recovering from surgery myself. I wanted to know about recovery, success stories, pain, mobility, shoes, etc. So I posted on Askville. Responses trickled in at first, only a handful per year. But over time, as more and more people discovered my question, the responses became more frequent. Finally, after 5 years, Askville shut the forum down. At the time it was closed, I was getting up to 2 responses per week. People like me, looking for advice, looking for information, or who just wanted to share their story. I decided to create this blog as a place for you to find info and advice, where you can tell about what you've been through. I'm not a doctor, and I have no medical training. But I can tell you what happened to me, how I cope with less mobility, my current abilities, and I can give you a way to talk about your experience as well. Send me your stories, I'll post what you'd like on the blog. Have a question you think I can answer? I'll try! Together, we'll find better living after accidents, birth defects, & arthritis.