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Thread: Response to Linda

  1. #1
    Join Date
    Jan 2005
    Location
    San Jose, California
    Posts
    6

    Response to Linda

    Hi Linda,

    Yes, you did talk to my Mom, and she said that you were "wonderful." I will pass on to my sister your comments regarding the two doctors being good and having actually had patients my niece's age. I'm curious, how do you know they have? You seem so certain about it. Any reassurances I can give my sister at this point would be a huge help for her and her husband. I have passed on your name to my sister, and I anticipate that you will be hearing from her. Thank you and thank you to all of the forum folks that have responded to my call for help. I could not imagine that I could gain so much excellent information so quickly. To quote my mom, you are all wonderful.

    Best Regards,

    Leigh Goldstein

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Hi Leigh...

    While juvenile scoliosis is relatively rare, I've met dozens of such patients. I can't tell you for sure about Dr. Rinsky, but Dr. Diab actually put me in contact with the parents of one of his juvenile patient. Unfortunately, I don't have any record of which patient was actually a juvenile.

    I'll try to get some patient references for you.

    Regards,
    Linda

  3. #3
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Leigh,

    Linda is a great source of information. She has helped more people than she can imagine - I know...

    Being a parent with two children who have scoliosis, I can tell you that your niece is not alone. Her circumstances may be unusual, or something about her entire medical history may be unique, but the fact that she has juvenile scoliosis does mean she's the only one ever to have this diagnosis. I know several parents (even on this list) who have children who were diagnosed with idiopathic scoliosis as a young child.

    If I can help at all, please let me know. Feel free to email me private (boulderfam@hotmail.com) and I'll send you my phone number, if you are interested.

    Take care!
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  4. #4
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Hi Leigh...

    I've now talked to both your sister and Dr. Diab. Dr. Diab confirms that he has a "handful" of juvenile scoliosis patients. He thought he had actually introduced Karen & her daughter to another family who was also in the clinic on the day they were there.

    Anyway, Dr. Diab said that he had your niece's MRI results on his desk and would be calling Karen soon. So, hopefully knowing what the whole story is will make Karen's decision easier.

    Regards,
    Linda

  5. #5
    Join Date
    Jan 2005
    Location
    San Jose, California
    Posts
    6

    Response to Linda and Carmell

    Hi Linda and Carmell,

    Again, many thanks for your input. Linda, I am pleased that my sister has contacted you. She needs a good resource in this area, and from everything I'm reading and hearing, you're as good as they get. Carmell, I will pass on your email to my sister. I will also encourage her to register here so that she can have everyone in this forum as support. You all are great!

    Thanks,

    Leigh

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