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Scoliosis

A mySMAteam Member asked a question 💭
Syria, VA

Does scoliosis cause death

March 22, 2023
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A mySMAteam Member

So...I don't want to paint an overly rosy picture. The healing after my surgery took months. It wasn't a pleasant experience, the healing was very painful and I had complications that led to a period of very severe depression. Given the alternative, it was just something that had to be done. Once recovered , it is great that I no longer need to wear a brace which was also very painful. My surgery was quite sometime ago, so i am hopeful for those who followed me that the hospitals may have marginally improved since my surgery.

March 30, 2023
A mySMAteam Member

Generally speaking...not anymore. Many years ago, scoliosis could cause such a severe curvature of the spine that it could compress the lungs and often led to death. About 35-40:years ago a surgery was introduced in which rods are fused to the back to prevent this. It is a serious but fairly routine surgery now. It is also one of the reasons i think everyone ought to completely ignore life expectancies for individuals with SMA as many of those statistics don't account for advances like that surgery.

March 26, 2023
A mySMAteam Member

Did you feel better after the surgery?

March 28, 2023
A mySMAteam Member

It was quite a long time ago...so my memory is a bit fuzzy...it occurred when I was in eigth grade, so I was about twelve or thirteen years old. My older sister who also has SMA type 2 was only the second or third person in the US to have the surgery. Before my surgery i had to wear a very thick heavy backbrace which was aweful as my school had no airconditioning and our home only had airconditioning in one room at the time.

March 28, 2023
A mySMAteam Member

How old were you when you had scoliosis surgery?

March 26, 2023

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