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We recently did serial casting and after 4 weeks had no improvement so surgery is next option. He started toe walking about 2 years ago. Just looking for the good and bad outcomes with this surgery. Thanks!

February 18
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A mySMAteam Member

My daughter had surgery on her Achilles tendon, but her case is different from your son's. My daughter has been diagnosed with SMA-LED. She is 4 years old. At the age of 2, she had surgery on both feet because she was diagnosed with vertical talus. Before the correct diagnosis, her feet were bandaged according to the three-plane foot therapy and stretched (for over a year). This did not improve the situation because, as it turned out, the bones were incorrectly positioned. After the diagnosis of vertical talus, we were recommended to have surgery to correct the position of the bones in her feet and shorten her Achilles tendon, because in her case it was too stretched due to the foot defect. Before the operation, our daughter had her feet in plaster casts several times for a period of about one month (each subsequent cast was in a stronger plantar flexion). The operation was successful. After the operation, she also had her feet in plaster casts for about a month. When our doctor operated on our daughter, he said that the Achilles tendon heals quickly at her age (she was 2 at the time). And indeed, she has no problems with it now. However, I do not know how recovery proceeds in older children.
PS. From my knowledge of SMA-LED, it is unusual that your son can stand and walk on his toes. My daughter has never been able to stand on her toes, but this is related to SMA-LED because her calves are so weak that she is unable to flex her feet to their full extent. Could you write more about what symptoms your son has and had in the past? We would like to learn as much as possible about this disease and its progression.

March 3
A mySMAteam Member

He has not had the surgery yet.

February 18
mySMAteam

Has your son's Achilles tendon lengthening surgery for toe walking been successful, and what were the outcomes?

It's understandable you're looking for experiences with this surgery, especially after serial casting didn't help. Unfortunately, the available information doesn't include specific experiences from members about Show Full Answer

Has your son's Achilles tendon lengthening surgery for toe walking been successful, and what were the outcomes?

It's understandable you're looking for experiences with this surgery, especially after serial casting didn't help. Unfortunately, the available information doesn't include specific experiences from members about Achilles tendon lengthening surgery for toe walking in SMA-LED.

What we do know is that SMA-LED can cause contractures in the ankles and feet, which can limit joint mobility and affect walking. Physical therapy to maintain range of motion is especially important to prevent contractures from permanently limiting joint movement and leading to joint deformity.

Since SMA-LED is rare and primarily affects the lower limbs, your son's medical team is likely taking the right approach by addressing the toe walking surgically after conservative treatment didn't work. Foot orthotics and ankle braces are sometimes used to help people with SMA-LED walk more easily, which might be part of the recovery plan post-surgery.

You might find it helpful to connect with other parents on mySMAteam who have children with SMA-LED or similar lower limb challenges. While specific surgery experiences may vary, sharing concerns and recovery tips with others who understand can be valuable during this time.

February 18

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