Emarismom-
Thank you for your post. I am taking all of my daughter's MRI's to a neurologist, in a few weeks. If he does not feel the syrinx is an issue, then I will go to another. She does not have Chiari or tethered cord. I believe her syrinx was there when she was 7, at dx, because her MRI back then was questionable. The questionable part however, was dismissed to movement during the MRI. Yet, looking now at all 3 MRI's from over the years, it seems evident that the syrinx was there all along, which is why I am not convinced it isn't contributing to her scoliosis. The last neurologist suggested that her braced caused it-which while anything is possible, I find this statement ridiculous.
Like you, I have seen, and continue to see differing opinions. I weigh them all, but then make the final decisions, with my daughter's opinion part of this now that she is 14. I stopped going to the orthos however, because when we visit them, they find ways to belittle our choices, and have even told us that what we are doing is wrong. I cannot have my daughter hear this every time-it breaks her down, and makes her current efforts feel like they are for nothing. We have even had to switch pediatricians twice, because every time we went in for a cough/fever/whatever they would go on about my daughter's back. No kid need to hear this over and over again. We now see a scoliosis specialist who deals with hundreds, maybe even thousands of children with scoliosis every year-from all over the world. We trust him immensely and are are in good hands.
Good luck to you and your daughter
Brooke
Thank you for your post. I am taking all of my daughter's MRI's to a neurologist, in a few weeks. If he does not feel the syrinx is an issue, then I will go to another. She does not have Chiari or tethered cord. I believe her syrinx was there when she was 7, at dx, because her MRI back then was questionable. The questionable part however, was dismissed to movement during the MRI. Yet, looking now at all 3 MRI's from over the years, it seems evident that the syrinx was there all along, which is why I am not convinced it isn't contributing to her scoliosis. The last neurologist suggested that her braced caused it-which while anything is possible, I find this statement ridiculous.
Like you, I have seen, and continue to see differing opinions. I weigh them all, but then make the final decisions, with my daughter's opinion part of this now that she is 14. I stopped going to the orthos however, because when we visit them, they find ways to belittle our choices, and have even told us that what we are doing is wrong. I cannot have my daughter hear this every time-it breaks her down, and makes her current efforts feel like they are for nothing. We have even had to switch pediatricians twice, because every time we went in for a cough/fever/whatever they would go on about my daughter's back. No kid need to hear this over and over again. We now see a scoliosis specialist who deals with hundreds, maybe even thousands of children with scoliosis every year-from all over the world. We trust him immensely and are are in good hands.
Good luck to you and your daughter
Brooke
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