Hi all- I posted awhile back regarding my 7.5 year old Emma needing to get surgery. She has a double curve. It is now 67 degrees upper and 57 degrees lower. She is scheduled for telescopic extension rod surgery on August the 7th at Children's Hospital Los Angeles with Dr. David Skaggs. I've been reading through several posts and I have such a heavy heart.
When we first found out about Emma's scoliosis she was 3.5, She wore a TLSO for about 4 years. It was slowly holding the curve but the curve did seem to be progressing slightly. At first we were under Dr. Bunnel at Loma Linda. He is a lovely man but every time I would try to find out alternative therapies he didn't seem very supportive. When I brought up the idea of extension rod surgery, he just kept saying we didnt need it at this point. He did seem a little put off that I would consider any other ideas other then his own for treatment.
I tried to do some research and saw a special on Dr. Skaggs on TV so I consulted with him. I knew he was more cutting edge and so I changed. I only saw him for about a year (with only two visits) when he suggested the extension rod surgery and actually suggested this more recent telescopic extension rod surgery. He said that TLSO wasn't giving the correction it should (at least 50% in the brace) so he felt it wasn't doing any good. Since Emma was starting to resist the brace more and more, we (with his ok) said it was fine not to wear the brace since she needed surgery anyway. Well, her curve went from 58 to 67 in six weeks. This is what Dr. Skaggs called the rebound effect...a curve going to where it would go if it hadnt been in the brace in the first place.
Now that I reveiw all these posts I just wonder if I could have done more. Maye the spinecore brace would have been more effective, thus delaying surgery. Maybe vertebral stapling would have done the trick. Maybe I should have made her wear the brace more.
I look at her little back and see the deformity and just wonder if I could have reduced it somehow. I felt so unknowledgeable and although I tried to find out as much as I could I didn't find this forum until too late. I feel as though I let her down.
Are there other altenatives or is it too late?
Joanne
When we first found out about Emma's scoliosis she was 3.5, She wore a TLSO for about 4 years. It was slowly holding the curve but the curve did seem to be progressing slightly. At first we were under Dr. Bunnel at Loma Linda. He is a lovely man but every time I would try to find out alternative therapies he didn't seem very supportive. When I brought up the idea of extension rod surgery, he just kept saying we didnt need it at this point. He did seem a little put off that I would consider any other ideas other then his own for treatment.
I tried to do some research and saw a special on Dr. Skaggs on TV so I consulted with him. I knew he was more cutting edge and so I changed. I only saw him for about a year (with only two visits) when he suggested the extension rod surgery and actually suggested this more recent telescopic extension rod surgery. He said that TLSO wasn't giving the correction it should (at least 50% in the brace) so he felt it wasn't doing any good. Since Emma was starting to resist the brace more and more, we (with his ok) said it was fine not to wear the brace since she needed surgery anyway. Well, her curve went from 58 to 67 in six weeks. This is what Dr. Skaggs called the rebound effect...a curve going to where it would go if it hadnt been in the brace in the first place.
Now that I reveiw all these posts I just wonder if I could have done more. Maye the spinecore brace would have been more effective, thus delaying surgery. Maybe vertebral stapling would have done the trick. Maybe I should have made her wear the brace more.
I look at her little back and see the deformity and just wonder if I could have reduced it somehow. I felt so unknowledgeable and although I tried to find out as much as I could I didn't find this forum until too late. I feel as though I let her down.
Are there other altenatives or is it too late?
Joanne
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