Hi-
I just discovered this forum recently and wish I had known about you 4 years ago!
My daughter Emma is 7.5 years old and was diagnosed at 3.5 with a juvenile idiopathic scoliosis. She has a double curve as well as a pectus excavatum. At first her curves measured 53 and 48. Dr. Bunnel, her Ortho at Lomalinda University Hospital, in Southern CA, recommended a TLSO brace for her to wear at least 22 hours a day.
We were fairly disciplined about her wearing brace the first two and half years. Even so her upper curve progresses to 58 degrees in the brace. She started resisting the brace more last year so she probably wore it no more then 15-20 hours a day during that time.
Meanwhile we switched orthos to Dr. David Skaggs at Chidlrens Hospital of LosAngeles in June of last year. I had heard that he was more on the cutting edge of the field. HIs opinion was to keep her braced as long as the brace was bringing the correction it should. (He said you always hope for at least 50% correction in the brace). And we were only getting like 10%. We tried wearing the brace for another 6 months.
Also, last August she had a severe rash break out on her abdomen and the only way to clear it was for her to not wear the brace for about two and half weeks. At her appt in Feb, Dr. Skaggs said since we weren't getting the right correction, and Emma was resisting the brace, he didnt think it would serve her to wear it. She was measuring 58 in the brace and 62 out of it. So we elected (to her delight) to not make her wear it any longer. He also said that we should consider doing surgery at this point. HE explained about extension rod surgery and how they do it and how she would need to go in every 6 months to have them extended. He also explained that he would elect to do it sooner then later for the following reasons: 1) the higher degree of curve the less correction you can acheive (only about 70% of whatever the curve is) 2) when you approach a curve of 70 - 80 degrees then you start imparing the functionality of lungs and maybe the heart. 3) her ribs are increasingly become malformed and her scoliosis is much more noticabable. (up to this point, becuase it was a double curve you coulndt really tell Emma had it. Now her right shoulder was much more "hunched" over.
We went home and decided to think about it for a bit. We met again with Dr. Skaggs April 9th to discuss surgery. Emma has not worn her brace and now, because of what Dr. Skaggs said was the rebound effect, she was measuring 67 degrees. He also told us about a new extension rod that you do not have to adjust but grows with you. So we would not have to go in for adjustments. He siad that only about 12 children in the states has used them but that the data is positive and the complicaitons no worse then with the other form of rods. HE is slated to do his first surgery with these next month and Emma would be his second. She is scheduled for this surgery in August. HE says we will most likely do final fusion when she is 10.
I share all this with you in the hopes to hear from those more expeirenced then I your opinions and perhaps some advice.
HAve any of you heard about this new rod? I wonder about recovery time for Emma from the surgery? how much do the rods limit her movement? what sort of complications have people experienced? do the children have lingering pain? etc. etc.
I would welcome your information and support so much!
Joanne Moss
Mother of Emma 7 (thoracic curve of 67 and lumbar curve of 45), Nathanael 5.5, Joshua 4.5 (who also has a 18 degree thoracic curve we are just monitoring) and Rebekah 2.5
I just discovered this forum recently and wish I had known about you 4 years ago!
My daughter Emma is 7.5 years old and was diagnosed at 3.5 with a juvenile idiopathic scoliosis. She has a double curve as well as a pectus excavatum. At first her curves measured 53 and 48. Dr. Bunnel, her Ortho at Lomalinda University Hospital, in Southern CA, recommended a TLSO brace for her to wear at least 22 hours a day.
We were fairly disciplined about her wearing brace the first two and half years. Even so her upper curve progresses to 58 degrees in the brace. She started resisting the brace more last year so she probably wore it no more then 15-20 hours a day during that time.
Meanwhile we switched orthos to Dr. David Skaggs at Chidlrens Hospital of LosAngeles in June of last year. I had heard that he was more on the cutting edge of the field. HIs opinion was to keep her braced as long as the brace was bringing the correction it should. (He said you always hope for at least 50% correction in the brace). And we were only getting like 10%. We tried wearing the brace for another 6 months.
Also, last August she had a severe rash break out on her abdomen and the only way to clear it was for her to not wear the brace for about two and half weeks. At her appt in Feb, Dr. Skaggs said since we weren't getting the right correction, and Emma was resisting the brace, he didnt think it would serve her to wear it. She was measuring 58 in the brace and 62 out of it. So we elected (to her delight) to not make her wear it any longer. He also said that we should consider doing surgery at this point. HE explained about extension rod surgery and how they do it and how she would need to go in every 6 months to have them extended. He also explained that he would elect to do it sooner then later for the following reasons: 1) the higher degree of curve the less correction you can acheive (only about 70% of whatever the curve is) 2) when you approach a curve of 70 - 80 degrees then you start imparing the functionality of lungs and maybe the heart. 3) her ribs are increasingly become malformed and her scoliosis is much more noticabable. (up to this point, becuase it was a double curve you coulndt really tell Emma had it. Now her right shoulder was much more "hunched" over.
We went home and decided to think about it for a bit. We met again with Dr. Skaggs April 9th to discuss surgery. Emma has not worn her brace and now, because of what Dr. Skaggs said was the rebound effect, she was measuring 67 degrees. He also told us about a new extension rod that you do not have to adjust but grows with you. So we would not have to go in for adjustments. He siad that only about 12 children in the states has used them but that the data is positive and the complicaitons no worse then with the other form of rods. HE is slated to do his first surgery with these next month and Emma would be his second. She is scheduled for this surgery in August. HE says we will most likely do final fusion when she is 10.
I share all this with you in the hopes to hear from those more expeirenced then I your opinions and perhaps some advice.
HAve any of you heard about this new rod? I wonder about recovery time for Emma from the surgery? how much do the rods limit her movement? what sort of complications have people experienced? do the children have lingering pain? etc. etc.
I would welcome your information and support so much!
Joanne Moss
Mother of Emma 7 (thoracic curve of 67 and lumbar curve of 45), Nathanael 5.5, Joshua 4.5 (who also has a 18 degree thoracic curve we are just monitoring) and Rebekah 2.5
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