Nine months ago, we discovered our daughter Brianna had scoliosis with a 21 degree curve. An xray 3 months later showed the curve was essentially unchanged, so our Orthopedic Surgeon recommended the wait and see approach. However, 6 months later, the curve has now progressed to 30 degrees.
Our situation is a little unique in that Brianna has Spina Bifida at L4, and had a pre-natal closure of the opening (this was done under an NIH study at UCSF). Our daughter's development has been tremendous, and we are truly thankful for this... she has not required a shunt, has excellent if not perfect bowel and bladder control and has full use of her legs, feet and toes, so we were not quite prepared for scoliosis. Of all of the things we worried about, this did not even make the list. However, it looks like it may be the major issue we have to deal with.
Our neurosurgeon says that the MRI's show that she has only a mild Chiari II, no syringomylia or syrinx, however, like all children with Spina Bifida, she does have tethered cord, which could be a factor. However, both our neurosurgeons (one from Kaiser one from UCSF study) are unsure that the tethered cord is the culprit of the scoliosis, and they are reluctant to separate the tethered cord because of the small risk that she may lose sensitivity in some lower body functions. They recommend trying bracing first and seeing if the curve advances in 6 months while braced.
The orthopedist is more inclined to believe the surgery will help, and was surprised that we were referred back to him for bracing before surgery. At any rate, Brianna will soon be scheduled for a brace fitting... I know little of the types of scoliosis yet, but this brace looks as if it would only go up to her armpit and down to her waist.
Of course, we are discouraged and uncertain how these events will affect our daughter's future. We also want to do everything to make sure that our daughter is getting the best treatment, by pursuing every possible avenue. We are with Kaiser in Southern California, and we do not always feel that they put our daughter's interest first. For instance, when I mentioned the Spinecor straps to our Orthopedic Surgeon, he quickly dismissed them as expensive and ineffective. Argue "ineffective" but don't give me "expensive." When my wife mentioned some sort of therapy in coordination with the traditional bracing, he quickly dismissed her idea by saying, "It won't do any good. There is nothing else you can do." When I asked if the curve could ever improve, he said, "Permanently? I've never seen it." Maybe he is right... but my research and my gut tells me that he is just being hard-headed, and I don't know if I want my daughter being treated by someone with this outlook.
At any rate, we will soon be seeking 2nd opinions from at least one other orthopedic surgeon, and possibly 1 more neurosurgeon (all non-Kaiser). We are in Santa Clarita, but would travel just about anywhere in Southern California, and we would appreciate any advice on finding the best Orthopedic Surgeon to discuss our daughter's situation. This is all new to us, so any advice in general would really, really, really be appreciated. Thank you!
Our situation is a little unique in that Brianna has Spina Bifida at L4, and had a pre-natal closure of the opening (this was done under an NIH study at UCSF). Our daughter's development has been tremendous, and we are truly thankful for this... she has not required a shunt, has excellent if not perfect bowel and bladder control and has full use of her legs, feet and toes, so we were not quite prepared for scoliosis. Of all of the things we worried about, this did not even make the list. However, it looks like it may be the major issue we have to deal with.
Our neurosurgeon says that the MRI's show that she has only a mild Chiari II, no syringomylia or syrinx, however, like all children with Spina Bifida, she does have tethered cord, which could be a factor. However, both our neurosurgeons (one from Kaiser one from UCSF study) are unsure that the tethered cord is the culprit of the scoliosis, and they are reluctant to separate the tethered cord because of the small risk that she may lose sensitivity in some lower body functions. They recommend trying bracing first and seeing if the curve advances in 6 months while braced.
The orthopedist is more inclined to believe the surgery will help, and was surprised that we were referred back to him for bracing before surgery. At any rate, Brianna will soon be scheduled for a brace fitting... I know little of the types of scoliosis yet, but this brace looks as if it would only go up to her armpit and down to her waist.
Of course, we are discouraged and uncertain how these events will affect our daughter's future. We also want to do everything to make sure that our daughter is getting the best treatment, by pursuing every possible avenue. We are with Kaiser in Southern California, and we do not always feel that they put our daughter's interest first. For instance, when I mentioned the Spinecor straps to our Orthopedic Surgeon, he quickly dismissed them as expensive and ineffective. Argue "ineffective" but don't give me "expensive." When my wife mentioned some sort of therapy in coordination with the traditional bracing, he quickly dismissed her idea by saying, "It won't do any good. There is nothing else you can do." When I asked if the curve could ever improve, he said, "Permanently? I've never seen it." Maybe he is right... but my research and my gut tells me that he is just being hard-headed, and I don't know if I want my daughter being treated by someone with this outlook.
At any rate, we will soon be seeking 2nd opinions from at least one other orthopedic surgeon, and possibly 1 more neurosurgeon (all non-Kaiser). We are in Santa Clarita, but would travel just about anywhere in Southern California, and we would appreciate any advice on finding the best Orthopedic Surgeon to discuss our daughter's situation. This is all new to us, so any advice in general would really, really, really be appreciated. Thank you!
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