My AFO Saga Continues

Jill Price avatar

by Jill Price |

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In my continuing ankle-foot orthosis journey, I picked up my new AFO for my left foot. It has been a very different experience from where I started this journey.  

The journey began in December 2017. I now have had three different orthotists. I liked the first one, but he left that office. His replacement was not my favorite; I felt that he did not listen to what I said or how I felt about the AFOs and my Charcot-Marie-Tooth. I did speak up and was guided to a different office and orthotist. So far, I like her. She listened and addressed the issues that I was having with the current AFOs. She recast my left foot and made a new AFO for it.

I picked the new one up this week. I could walk as soon as I put it on and had minimal discomfort. I was surprised at how easy it was to walk and how straight my ankle was in the new one. My orthotist suggested I wear it for two hours a day at first, then slowly add more time and see her in two weeks. I wore the brace for about two hours while having lunch with a friend. I had to stop walking at one point and take the brace off due to extreme pain in the back of my foot. There was no bench around, so my friend helped me take the brace off and put my shoe back on, in the middle of the mall. I then walked to my car with one brace in my hand and one on my foot. It was a slow, uncomfortable walk.

When I got home, I checked my foot and saw I had a quarter-sized blister! No wonder it had hurt so much. I cleaned it and bandaged it. I padded the old brace in the spot, so I could put on a shoe to do some errands. The next morning I called the office to let the orthotist know what was happening. She wasn’t there, but the receptionist told me to text her on her clinic cellphone. She got back to me within an hour. The orthotist asked some questions, then said she would check her schedule and get me in as soon as she could. I had an appointment scheduled shortly afterward.

At my appointment, my orthotist took the new AFO and made a deeper indention where the blister is. She listened to my concerns and I was impressed with how quickly she addressed the issue. I hope that once this situation is under control, I will find it easier and safer to walk.


Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.


Louise Vella avatar

Louise Vella

I had been using different AFOs since I was 11 yrs old. Ultimately, SAFO (Dorset Orthopaedic) was the winner. It changed my life. No blisters, no pressure points. Foot drop gone; equilibrium problems still present. I started using crutches. Balance is ok, drop foot is not there anymore... I am one happy CMTer. I have been wearing SAFOs on both feet since Jan 2002:)

Stephanie Martinez avatar

Stephanie Martinez

Hi Jill,

I came across your page as I searched for AFO braces for people with CMT. I have CMT type 2 and was told I had it when I was in the 3rd grade. I'm in my early 30's and have been wearing the same braces since my early 20's. I would like to know more about your journey and how you cope with CMT. I would especially like to know how to obtain new AFO braces. If possible, could you email me?


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