Hello everyone! So glad I found this forum.
My 10 year old daughter was diagnosed with 2 thoracic curves and a compensatory lumbar curve at the age of 8 in early 2010 (she just turned 10 a couple of days ago). When she was diagnosed her curves ranged from 31 down to 19 in the compensatory lumbar curve. She has been in a TLSO brace since May of 2010. The curve seemed unchanged at her first follow-up but then increased to 37 at her last follow-up.
We are in the military medical system and her doctor is changing commands. Given her age and the chances of progression, I requested a second opinion to try to get her to a specialist with whom she will have continuity of care and can develop trust if it becomes necessary to have surgery.
By the way, just to give you some idea of the care, not that they are all bad... At the age of 6 we saw one of the PCMs for a respiratory infection. I noticed her rib hump at that point, in the doc's office, and was told it was nothing to worry about and I was concerned for no reason. We are currently with a nurse as our PCM and she's better than any of the doc's we've seen. You can only imagine my guilt at not having ignored the doc and scheduled an appointment immediately with someone else.
We were able to get a referral out for a second opinion to Children's Hospital of the King's Daughters. The doctor there is a scoliosis specialist and measured her curve at 42. I know that there are some differences just from it being two docs taking the measurements but that was in 3 months time. He knows her previous doc and all I got was that the brace is an appropriate treatment, come back in 4 months. To be honest, I wasn't incredibly impressed and am trying to figure out where to go from here. Is there anyone who can recommend a scoli specialist close to the Norfolk/Virginia Beach area? Any advice on dealing with Tricare and trying to get out of the military system?
Everything I am reading indicates that my daughter is in the highest risk group for progression. I fear that surgery is probably in her future. I am frustrated by the lack of information being passed on by the doctors we have seen thus far. There have been no recommendations of literature or research. No discussion of the different aspects of her scoliosis, etc. Most of what I know has been through my own stumbling through what I can find on scoliosis.
I'd appreciate any advice that can be offered. Thanks!
My 10 year old daughter was diagnosed with 2 thoracic curves and a compensatory lumbar curve at the age of 8 in early 2010 (she just turned 10 a couple of days ago). When she was diagnosed her curves ranged from 31 down to 19 in the compensatory lumbar curve. She has been in a TLSO brace since May of 2010. The curve seemed unchanged at her first follow-up but then increased to 37 at her last follow-up.
We are in the military medical system and her doctor is changing commands. Given her age and the chances of progression, I requested a second opinion to try to get her to a specialist with whom she will have continuity of care and can develop trust if it becomes necessary to have surgery.
By the way, just to give you some idea of the care, not that they are all bad... At the age of 6 we saw one of the PCMs for a respiratory infection. I noticed her rib hump at that point, in the doc's office, and was told it was nothing to worry about and I was concerned for no reason. We are currently with a nurse as our PCM and she's better than any of the doc's we've seen. You can only imagine my guilt at not having ignored the doc and scheduled an appointment immediately with someone else.
We were able to get a referral out for a second opinion to Children's Hospital of the King's Daughters. The doctor there is a scoliosis specialist and measured her curve at 42. I know that there are some differences just from it being two docs taking the measurements but that was in 3 months time. He knows her previous doc and all I got was that the brace is an appropriate treatment, come back in 4 months. To be honest, I wasn't incredibly impressed and am trying to figure out where to go from here. Is there anyone who can recommend a scoli specialist close to the Norfolk/Virginia Beach area? Any advice on dealing with Tricare and trying to get out of the military system?
Everything I am reading indicates that my daughter is in the highest risk group for progression. I fear that surgery is probably in her future. I am frustrated by the lack of information being passed on by the doctors we have seen thus far. There have been no recommendations of literature or research. No discussion of the different aspects of her scoliosis, etc. Most of what I know has been through my own stumbling through what I can find on scoliosis.
I'd appreciate any advice that can be offered. Thanks!
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