It was a busy week of doctor appointments — and decisions.
First, I went to see my new orthotist. I’m so glad I decided to speak up about how the other orthotist made me feel. My new doctor listened to my concerns. She adjusted the ankle-foot orthotic (AFO) that I wear due to Charcot-Marie-Tooth so that it did not hurt my ankle. She then decided to cast my left leg again to make a new brace. When I asked about insurance, her response was, “I am making new ones because these were not made correctly.” Judging by my experience with the AFOs, that makes sense.
Am I confident the new one will fix the problem? Not really. But I’m willing to try. Do I like the look of the new AFO? It is bulkier than I would like, but I may have to put that aside for safety and quality of life.
I also — finally — went to back to the podiatrist about my hammertoe. I still don’t like my two options: fuse the big toe or partial toe amputation. They both seem pretty awful.
Let’s start with the fusion. Basically, the doctor will cut the toe bone, straighten it, and put a screw in to hold it in place. It does not sound fun! Then I need to keep my foot immobile for at least four weeks while the fusion heals. Then there are another four to six weeks of no weight-bearing. Did I mention this is my right foot? That means no driving for at least eight weeks! Yikes. How can I do that as a single mom?
Now the partial toe amputation. The doctor would amputate my toe up to the knuckle. I would be able to walk that day, but no driving for 10 to 14 days. There is no fusion to mess up accidentally. My doctor did point out that, with my mobility issues, there is a good chance of messing up the fusion. Sadly, he is probably correct. After all, it can take just one fall or jarring of the foot to do that. He said that he suggested the partial amputation because he felt, with the CMT, this would be an easier recovery than the fusion.
When I asked what he would recommend, his suggestion was to get a second opinion from the other doctor in the practice. He then texted the other doctor and set up an appointment for me. That gesture boosted my trust in this doctor and made me feel that I had chosen not just a good doctor, but a good person.
I am still not sure what I am going to do about the hammertoe. I will see the other doctor in a week. Then I will digest all of the information and try to make a decision. I really do not like either option. I think it will come down to what works best for my son and me.
I am glad I’m learning to advocate for my needs, and I’m grateful that I’ve found doctors who are willing to listen and help. It’s not easy, but it’s so worth it.
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.
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