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  • confused and need help

    my daughter lauren age 16 has spastic quad cp and mentally challenged.in june of 2004 she was diagnosed with neuromuscular scoliosis of 15 degrees. then 9 months later the doctor said it progressed to 46 degrees and we should do surgery. so surgery was set up for sept 29th of 05.we had to do mri and had to be sedated due to her disabilities.well at the preop sept 23rd they did another xray and said she only had a curve of 31 degrees and sugery was not needed.the doctor was totally differant than last time saing flexibility of her spine was not a problem if it did get worse again and does not want to see her for a year she also has lordosis and her back in my opinion looks pretty bad she has a very hard time sitting and standing she is in a wheelchair most of the time can walk with a gait trainer.i just feel this doctor made mistakes in measuring this time or maybe last timeand my daughter had to go thu all these tests and stuff for nothing.i have made an appt at shriners in tampa for a 2nd opinion.my fear is that if we wait too long they will not be able to fix her back and also going thru all this stuff again.can the degrees lessen that much on its own or at all i thought it just continues to get worse not better.also when we were leaving the preop appt we were told all of the ortho doctors were going to another facility as of oct 16 2005 we all had to sign medical releases to trasfer records.could this have anything to do with his decision please helpthis whole thing has been very upsetting.i just want my lauren to be the best she can be

  • #2
    Hi Casey...

    I think you're doing the right thing by getting a second opinion (actually, it really sounds like a third opinion if I understood that "the doctor was totally different than last time" to mean a different individual). I think it can be very difficult to measure curves in individuals who don't stand well on their own, so that may be part of the problem.

    I wouldn't worry about waiting, as scoliosis surgery is routinely done on people into their 70's (in age), as well as for very large curves.

    Best of luck with Shriners. I hope you ge a definitive recommendation.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

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