As My AFO Problems Continue, I Opt for a Second Opinion

I have AFO woes … again.

I am becoming very frustrated with my ankle-foot orthoses. They may be better for my ankles, but what good are they if they are uncomfortable? Yes, I shared that with my orthotist many times. But each time she adjusted one area, it hurt in another. I am about done with them!

I have Charcot-Marie-Tooth Type 1A and wear AFOs to help with stability, foot drop, and overall gait issues. I have had these AFOs for about a year, and have had issues with them since day one. This past summer, I went to a new orthotist. She made me a new AFO for my left foot. It definitely straightens my ankle but hurts the ball of my foot, causes blisters, and is uncomfortable. Therefore, I cannot wear it. I’m frustrated because I know it helps with supporting my ankle, but what good is it if it hurts?

Last week, I saw my podiatrist for a follow-up appointment for my hammertoe, which is doing better. I don’t need surgery yet. He asked about my AFOs, so I shared my issues. He looked at them and asked a few questions. Then, he recommended I get a second opinion about the AFOs, and he gave me the contact of a different doctor who has experience with CMT.

So, why do I feel guilty for calling another doctor for a second opinion? I like the orthotist I am working with, and she really is trying to make this new AFO work. Why do I feel like I am “cheating” on her? I know it sounds crazy, but I feel like I am going behind her back.

I know it is perfectly acceptable to get second opinions about medical issues. In fact, many doctors encourage it. My podiatrist always suggests a second or even third opinion. But why am I so worried about going to a different orthotist? Maybe they can come up with a solution for the pain that will address ankle stability and foot drop. Maybe they can suggest a way to make this AFO more comfortable to wear without causing more blisters.

I eventually did go to a new ankle-foot doctor who had different ideas of what to do for my weak ankles. He recommended the Arizona brace. He also said my tendons are shot on both ankles, the left one being the worst. However, it is the right one that hurts. He suggested a tendon transfer for the right ankle.

My concerns are the non-weight-bearing part, getting in and out of my apartment (which has over two flights of stairs), and not driving while the right ankle heals. These sound silly, but they are a huge concern for a single mom who is responsible for the care of a child. I am not worried about taking time off work, but how will I take care of my child? I know I need to do the surgery, but I really need to figure out the logistics of what recovery will look like, as well as the timing of when to do this and how to handle the aforementioned issues. There is so much to think about.

I guess it is time to generate a list of questions for the doctor. Maybe I should get a third opinion?

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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.