Hi- I have read this forum for months now but this is my first time posting. My 11 yr old daughter- Andi, has congenital scoliosis. This has been one roller coaster of a ride. After being on a waiting list for 6 months with Dr Lenke at Shriners in St Louis, her surgery was scheduled for March 6 but they found a cyst on her spinal cord and cancelled the surgery until they could decide whether or not to remove it. After they decided it would be fine to leave the cyst- back on the list we went. We were then told her surgery date would be May 15th. We went last week for the pre-op tests and x-rays and were told that now she will need to be in halo traction for 5 weeks before her surgery and that they have now decided to remove they cyst when they do the fusion surgery. Her upper curve has progressed to 105 degrees and Dr Lenke said that the curve in her neck is very stiff. He wants to use the traction to loosen the curve in her neck before fusing it.
Needless to say, we were devasted by the news. We will now be getting her halo on May 15th instead of the surgery. The surgery is scheduled for June 19th. Andi seems to be in good spirits and just wants to get it all over with. I know that the traction is the best for her but it is going to be so hard to see her like that for so long.
Is anyone familiar with the halo traction? We weren't given much information at the visit and were in too much shock to ask many questions.
Has anyone stayed for a long duration at the Shriners? I am wondering if they will have things to keep her busy or if I should plan on bringing a ton of things for her to do? 7 weeks away from home is a LONG time!
I am planning on staying in the parent housing at the hospital during the week and my husband and son will get a hotel room when they come for the weekends. Has anyone used the parent housing? They also told me I could stay bedside. I am just trying to get an idea of what to expect once we get there.
Thanks-
Deanna
Needless to say, we were devasted by the news. We will now be getting her halo on May 15th instead of the surgery. The surgery is scheduled for June 19th. Andi seems to be in good spirits and just wants to get it all over with. I know that the traction is the best for her but it is going to be so hard to see her like that for so long.
Is anyone familiar with the halo traction? We weren't given much information at the visit and were in too much shock to ask many questions.
Has anyone stayed for a long duration at the Shriners? I am wondering if they will have things to keep her busy or if I should plan on bringing a ton of things for her to do? 7 weeks away from home is a LONG time!
I am planning on staying in the parent housing at the hospital during the week and my husband and son will get a hotel room when they come for the weekends. Has anyone used the parent housing? They also told me I could stay bedside. I am just trying to get an idea of what to expect once we get there.
Thanks-
Deanna
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