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  • Do contractures bother you?

    Posted by deann-r on March 17, 2023 at 9:00 am

    Lately I’ve seen social media posts on preventing and correcting knee & hip contractures. Although I understand the logic, as an adult I don’t really have problems with mine. Yes, I’m permanently bent, but it doesn’t cause me pain or issues with dressing. Once they tried to blame a surgical slip-up on them, but I feel it was more an issue with an incompetent surgeon.

    When I see posts regarding contractures I’m brought back to kindergarten where bean bags were stacked on my knees at rest time. It was miserable and kind of traumatic now that I think about it. I can get on board with some physical therapy and stretching, but after that, I feel like you should pick your battles.

    We opted not to do tendon release surgery, thank goodness. For us, the risks outweigh the rewards. Not knowing my actual height is fine by me. Down the road, I don’t know if I’ll have a change of heart but that’s where I’m at now.

    What lengths have you gone to in an effort to prevent contractures? Was it successful? Do you have issues with contractures as an adult?

    alyssa-silva replied 1 year, 2 months ago 4 Members · 8 Replies
  • 8 Replies
  • alyssa-silva

    March 19, 2023 at 9:32 am

    As an adult, I haven’t done much of anything. I like to be stretched out just because it feels good. But it doesn’t prevent me from getting contractures. As you said, I’m permanently bent as well. Fortunately, it doesn’t really cause me pain. Sometimes, I experience some discomfort and need to be repositioned, though.

    As a child, I did a lot of stretching which I don’t think made a difference in hindsight. My parents almost took me to get Botox to release the tendons, but then my brother was involved in an accident and we had to cancel. Later, we came to find out Botox is dangerous for people with SMA, so I thankfully dodged one less disaster in my life.

    Did you do anything as a child for contractures (besides that horrible kindergarten experience)?

    • deann-r

      March 20, 2023 at 1:28 pm

      Other than the typical stretching we didn’t do much. I wore orthotics on my feet and a brace for my back but neither did much good. Do you wear any braces?

      Dodged a bullet with the Botox for sure. It doesn’t seem to be common knowledge that it’s contraindicated for those of us with neuromuscular diseases.

      • alyssa-silva

        March 24, 2023 at 11:00 am

        I do. I wear foot orthotics and a back brace because I never had spinal surgery to correct my scoliosis. I love my foot orthotics because I have super sensitive feet and they help protect them from getting injured. The back brace, well… I don’t love it but I wouldn’t be able to sit up without it. I’d collapse immediately, so I don’t have a choice!

  • survivinglife

    March 20, 2023 at 11:52 am

    Yes, I have a lot of contractures.  They hurt a lot, especially in the knees.  I had a surgery on my right knee when I was 9, but it didn’t help at all, and it was a lot of pain during the surgery and recovery.

    • deann-r

      March 20, 2023 at 1:20 pm

      Good to hear from you Crystal! Sorry to hear your contractures are painful. Do you do anything that brings relief? I’ve heard surgery can be a difficult recovery and doesn’t have a high success rate. In theory it seems like such a good option.

  • anna

    March 20, 2023 at 12:43 pm

    So, bean bags on the knees is a thing? I thought it was just one of my physiotherapist’s perverse inventions! PT was excruciating when I was a child. It wasn’t just the pain during the sessions -that I could handle- but even the mildest injury would take weeks to heal. My therapist was telling me to be patient for my own good, my parents were telling me that we should ask him to slow down if it was so unbearable, but that only made me think that the problem was my low threshold for pain. No one had really realized that he wasn’t supposed to push so hard in the first place. This nightmare lasted about a year; after that, either my body gradually got used to it or, more likely, he gave up trying to correct the contractures and settled with maintenance.

    Aside of PT, I used to wear splints for a while, but they reduced my mobility further during the day and affected my quality of sleep at night.

    Surgery was a no go for me too because of the risks. I didn’t even get a spinal fusion which is a decision I’ll be questioning forever.

    I’ve noticed that bone deformities make me more susceptible to injuries, but other than that, I don’t mind them either.

    • deann-r

      March 20, 2023 at 1:48 pm

      Technically I don’t think bean bags to straighten knees is a thing, but apparently it was the go to heavy object I guess. Push through the pain must also be a popular motto. Sorry to hear PT was so miserable. Glad it got better as time went on. Hopefully therapists are learning how to better work with patients like us. Do you do PT as an adult?

      Spine fusion is a tough call. On one had there are major risks. On the other hand it can relieve a lot of issues. At the time I’m sure your parents made the best decision they could with the information they were given. What kind of issues do you have now?

  • anna

    March 20, 2023 at 2:23 pm

    Yes, I never stopped getting PT until three years ago when Covid turned my life upside down. Now I need to find a new therapist because my current one will retire soon, and due to this traumatizing experience, I’m still dreading the adjustment period.

    I’m not having major problems. My breathing is not as affected as you would expect. I just have a very bad scoliosis which made Spinraza injections impossible. Plus, the eternal pain of trying in vain to find the right brace for my needs. My family has never been big on bold decisions so I’ll never know if they made the right call. They did the best they could though.

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