Complicated Decisions to Make About My Hammertoe Surgery

Complicated Decisions to Make About My Hammertoe Surgery

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.

Jill was diagnosed with CMT 1A at the age of 2 . She is a fourth-grade teacher and mom to a teenage son, who also has CMT. Jill loves photography, travel, and spending time with family and friends. She researches and writes tips that make life with disability a little easier.
Jill was diagnosed with CMT 1A at the age of 2 . She is a fourth-grade teacher and mom to a teenage son, who also has CMT. Jill loves photography, travel, and spending time with family and friends. She researches and writes tips that make life with disability a little easier.
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  1. Lisa says:

    I had both big toes fused and they were done with also a tendon transfer to help with drop foot from cmt. One toe was done when I was 15, the other at 21. The tendon transfer (I think it’s called The Jone’s tendon transfer) was a mistake because rather than helping lift my foot, it pulled my toe downwards and rotated it a bit. Without the tendon transfer I think it would have turned out great. I’ve also had all the toes on my left foot fused because of hammer toes. I had that done at 15 along with the big toe. I wish I’d had the toes on my right done as well because it’s hard to take care of the nails and to keep athletes foot away from under the curled toes. I don’t like the amputation idea because of sores and healing problems my friend had with her partial foot amputation… either way, don’t worry about the 6 weeks healing time. this is a decision that will affect the rest of your life. best of luck with your decision!

    • Jill Price says:

      Thank you for sharing your experiences with me. I still think 6 weeks of no driving is going to really tough as a single mom.

      • Lisa says:

        Maybe other people will help drive your kids or they can take a break from their activities – It’s often surprising how willing people are to help. Maybe Ubers and taxis can be part of the solution. That said, maybe losing a part of your toe isn’t the end of the world either. I know one woman with cmt that had her foot amputated because her toes kept dislocating. she’s very happy with her outcome!

    • Eric R. Johnson says:

      Regarding the athletes foot under the the toes, It helps to allow for your feet to dry out completely, which means walking without shoes and socks as much as possible.

      I know from personal experience that the toes can be straightened significantly by massage on the inner calves below the knee, from where the toes are activated. Manual stretching with hands.

      The big toes are another matter. Mine, like my thumbs do not work at all.

      But surgery, and I have had them at 15 and 16, is very difficult, especially with CMT complicating anesthesia use. This, especially as one gets older, surgeries should be avoided in favor of Yoga (tune-up) or other similar highly adjustable stretching and strengthening exercise that does not sap all energy thereafter or be experienced as torture..

  2. I’ve had seven of my toes fused/pinned and the results were very good. Before the fusions my toes for curling under and I was walking on my toenails which was extremely painful. I was on crutches for six weeks each time but managed to get to work. The orthopedic surgeon did one foot at time. I worked with the affected foot up on a box under my desk to keep the foot from swelling. Many years later, I’m still glad I had it done. You could have hand controls installed on your car for the 12 weeks you’ll be unable to drive. I have used SureGrip hand controls for many years and am only allowed to drive with them. They can easily be taken off and sold after you are finished your operations. You might even be able to find some you could rent or borrow and a good mechanic can install them in about a half hour. Best of luck.

    • Jill Price says:

      Glad it worked out for you! Thank you for the information about hand controls, I honestly did not even think about that.

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