I am new to this site, as well to this diagnosis. First of all I want to thank everyone here for the time they have put in to their posts. Having only had my daughter diagnosed 2 weeks ago I have devoted my days and nights to research. It was when I got here that I finally found info and people who understood what was racing through my mind. The knowledge I have gained so far has been invaluable to me.
My daughter's story so far. A month ago I got a message from her Dad saying he thought something was wrong with her back. It was only then that I learned he had scoliosis and had worn a brace when he was younger. when my daughter came home I looked at her back and discovered that indeed it did not look right. Shoulder and ribs sticking out, curve to the spine and her waist shifted to the side. I wondered how I could miss it - but with an 11 yo posture and clothes always on it had escaped me.
So, knowing something was not right - off to the Drs. As soon as she saw my daughters back it was off for an x-ray. I knew watching the x-ray come up that it was not good. Still, we expected a brace, something my child was not looking forward to. The next day her DR called, and told me that it as 58* and she needed to see the specialist, she also hinted at surgery but I still was thinking brace.
We saw the specialist the following Tuesday where he said the curve was 61* and that it would get worse. Surgery was the only treatment option. I thought I would faint. He did say we could take some time, he encouraged doing research and deciding when it would be right for us. My daughter wanted it done sooner rather than later. I agree.
This was a week ago. We have a tentative date, a great DR, and a wonderful hospital. Still, I feel as though I am suffocating. My child does not seem to care much yet. She talks a bit to me with general worries; when will I eat and do I have to wear a hospital gown. The big stuff.
Me? I am terrified, like most others were. This is my baby and they want to cut her open. Add to that I do not have a great relationship with hospitals. Two years ago I took my best friend in for surgery, and due to a rare complication and infection, I did not get to bring him home. This plays heavily in my mind. I cannot do that again. I know the likelihood is beyond tiny, but still it is the recurring nightmare.
My apologies that this was so long. Figured I would get the bulk of it out in one sitting. I am hoping by being here I can get the feedback to help get both of us through this. To have people to talk to who do understand what our day is like. I am lucky though, I have a friend here who has had scoliosis for over 50 years amongst other things and he is doing great. He is a great shoulder for me. Still, things have changed, and this is my baby. If I could wave the wand and make her better, it would be done.
I wish I had specific questions, and I am sure I will. for now just want to meet people.
Thanks,
Jules
My daughter's story so far. A month ago I got a message from her Dad saying he thought something was wrong with her back. It was only then that I learned he had scoliosis and had worn a brace when he was younger. when my daughter came home I looked at her back and discovered that indeed it did not look right. Shoulder and ribs sticking out, curve to the spine and her waist shifted to the side. I wondered how I could miss it - but with an 11 yo posture and clothes always on it had escaped me.
So, knowing something was not right - off to the Drs. As soon as she saw my daughters back it was off for an x-ray. I knew watching the x-ray come up that it was not good. Still, we expected a brace, something my child was not looking forward to. The next day her DR called, and told me that it as 58* and she needed to see the specialist, she also hinted at surgery but I still was thinking brace.
We saw the specialist the following Tuesday where he said the curve was 61* and that it would get worse. Surgery was the only treatment option. I thought I would faint. He did say we could take some time, he encouraged doing research and deciding when it would be right for us. My daughter wanted it done sooner rather than later. I agree.
This was a week ago. We have a tentative date, a great DR, and a wonderful hospital. Still, I feel as though I am suffocating. My child does not seem to care much yet. She talks a bit to me with general worries; when will I eat and do I have to wear a hospital gown. The big stuff.
Me? I am terrified, like most others were. This is my baby and they want to cut her open. Add to that I do not have a great relationship with hospitals. Two years ago I took my best friend in for surgery, and due to a rare complication and infection, I did not get to bring him home. This plays heavily in my mind. I cannot do that again. I know the likelihood is beyond tiny, but still it is the recurring nightmare.
My apologies that this was so long. Figured I would get the bulk of it out in one sitting. I am hoping by being here I can get the feedback to help get both of us through this. To have people to talk to who do understand what our day is like. I am lucky though, I have a friend here who has had scoliosis for over 50 years amongst other things and he is doing great. He is a great shoulder for me. Still, things have changed, and this is my baby. If I could wave the wand and make her better, it would be done.
I wish I had specific questions, and I am sure I will. for now just want to meet people.
Thanks,
Jules
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