I’ve been an active volunteer for the CMTA for the past 13 years. I’ve organized CMT conferences, written articles, acted as an administrator on several Facebook groups, created a presentation to teach kids about CMT, answered Ask the Expert questions, facilitated a CMTA Branch, etc, etc, etc.
I thought I was familiar with practically every aspect of receiving a CMT diagnosis, from bracing and neurotoxic medications to symptoms and genetic testing. As we come out of Yohan’s surgery, I realize that I had NO clue what kids and adults go through to correct the CMT foot-NO clue whatsoever.
Sure, I’ve seen presentations from orthopedists, listened to webinars on the subject, seen many CMT battle scars on our Facebook group, but to experience this surgery with your child or loved one is an incredibly eye opening journey, one for which I was not fully prepared. None of us were.
Many people with moderate to severe CMT have claw toes, where the toes contract and resemble just that- claws. Imbalanced muscles create high arches, drop foot, loose ankles and very tight Achilles tendon and calf muscles. When leg bracing or AFO’s can no longer be worn to correct improper gait, surgery may be advised.
To lower Yohan’s arch, the plantar fascia, the ligament connecting the heel bone to the toes (pink), was cut. The ball of Yohan’s big toe had dropped, so a piece of the bone had to be removed. To correct his misaligned heel, a wedge of the heel bone was extracted.
To alleviate foot drop (inability to raise the foot upward) and stabilize the ankle, tendons were transferred and repositioned.
His rebel pinky toe, stiff, bent and contracted was straightened with a pin, which is only removed 4 weeks after the surgery. Lastly his calf muscle was also cut and released, allowing for freer movement and flexibility.
Yohan was just discharged from the hospital today, after being admitted on Tuesday morning. The pain was intolerable and out of control. Once pain runs wild, it is hard to capture and domesticate, but it is not impossible. It took a couple of days of different pain regiment trials, but he conquered! Yohan is home, enjoying a selection of desserts and treats his grandmother from VT sent to appease his sweet tooth and raise his spirits.
You may want to know:
These procedures can cause severe pain that can be controlled with adequate doses of potent medications. Don’t be a hero. Take your meds if you need them and embrace comfort. Learning and practicing deep breathing and meditation before the surgery can help you manage the pain.
Follow your surgeon’s medication schedule and do not skip doses of medication. Break away pain is dreadfully hard to contain.
The opioids prescribed can cause constipation, so get the stool softeners ready. Drink plenty of water, too.
Some surgeons hospitalize their patients after this surgery, others do not.
Keep your leg elevated after surgery.
Before surgery, figure out how you will maneuver on one foot (especially if the other foot is hard to walk on). Will you use a knee scooter, crutches or a wheelchair? How will you get to the bathroom? Whatever you decide, practice before the surgery!
If you have CMT and can relate to the story above, I have nothing but the utmost admiration for you. These are complex and delicate surgeries that take strength, patience and courage. My respect for you knows no bounds.