My 4 year olddaughter has a 87 degree curve right now w/ restritive lung disease and is scheduled for surgery next month. (curve was dignaoised 28 degrees at 11 months- but rib hump was noticable at age 3 months. All CT and MRI cans have comeback clean and they can't find a reason for her curve)
But we aren't sure what type to do. If we opt for a complete fusion her curve will go from 87 to about 40-45 degrees. But we lose pullmonary capacity. If we opt for growing rods, they can only correct her curve to 60 degrees, but we can some lung growth.
Casting and bracing were/are out of the question because she has another medical condition called Epidermolysis Bullosa. Its where she gets open wounds and blisters all over her body from the smallest amount of friction. The casts would cause too many wounds and we wouldn't be able to treat them, thus causing infection. The bracing would cause too much friction too and we wouldn't be able to comply with the 22 hours a day to wear it since her daily bath and wound care takes 2-3 hrs per day to complete.
She is extrmemly prone to infection and the more we are in the hosp the more we are opposed to germs. Multiple surgeries could be life treatening to her. But we aren't sure if a fusion at this point would be life threatening as well.
anyone else had a fusion at a young age? Did you have regrets? Long term complications?
Thanks
But we aren't sure what type to do. If we opt for a complete fusion her curve will go from 87 to about 40-45 degrees. But we lose pullmonary capacity. If we opt for growing rods, they can only correct her curve to 60 degrees, but we can some lung growth.
Casting and bracing were/are out of the question because she has another medical condition called Epidermolysis Bullosa. Its where she gets open wounds and blisters all over her body from the smallest amount of friction. The casts would cause too many wounds and we wouldn't be able to treat them, thus causing infection. The bracing would cause too much friction too and we wouldn't be able to comply with the 22 hours a day to wear it since her daily bath and wound care takes 2-3 hrs per day to complete.
She is extrmemly prone to infection and the more we are in the hosp the more we are opposed to germs. Multiple surgeries could be life treatening to her. But we aren't sure if a fusion at this point would be life threatening as well.
anyone else had a fusion at a young age? Did you have regrets? Long term complications?
Thanks
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