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Thread: Any input would be helpful ......

  1. #1
    Join Date
    Sep 2005
    Posts
    5

    Any input would be helpful ......

    Any input regarding Shriner's Hospital in Sacramento, CA
    &/or a Dr. Benson?

    What should I/we expect for first visit? Last update (6/05) double curve 55-T, 54-L for daughter 14 yrs. old! It has been said she's to far for bracing - needs fusion surgery.

    Also a Dr. John Gray - Sonoma/Marin County?

    More questions to follow -

    Thanks

    KB

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,801
    Hi Kelly...

    Dr. Gray performed my scoliosis surgery 13 years ago. I'd be happy to talk to you about my own case if you care to contact me directly -- linda @ scoliosislinks.com (without the spaces).

    Regards,
    Linda

  3. #3
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    Kelly,

    Your first appointment at Shriner's might seem quite hectic. Ours was, but we have three daughters with kyphosis and/or scoliosis. They will do the normal weight, height, blood pressure, etc. Then they will x-ray your child. After that the doctor will check your daughter's back pretty thoroughly. He will discuss her curves, what he recommends be done, etc. The best part about Shriners is that if you use them now, they will take care of her until she is 21 years old, at no cost to you or her. Make sure to build a list of questions. Take pen and paper with you, and possibly another person. It will help you to get all the information you can. Our 17 year old daughter was to far for bracing too. She has had her surgery and doing wonderful. I thank the Shriners Hospital for that. Without them, we would of really had to struggle to get her back fixed. As far as I am concerned, Shriners is the best. You are treated like millionaires when you walk in the door and nothing less. It doesn't matter how much money you make or don't make, every child and family gets treated the same.

    'til later,
    Nikki

  4. #4
    Join Date
    Sep 2005
    Posts
    5

    Post thanks & sorry

    Thank you Nikki and Linda for responding - and sorry for not getting back to you sooner.

    I'm/we on one heck of a ride here and it doesn't seem to want to stop!!!!

    I have been OVERWHELMED by all of the "stuff" that goes along with this (not including what life throws at you in general). This site - IS helpful in alot of ways - thanks to all.

    We went to our Shriner's appointment - and I/we was/were made to feel relaxed as soon as we got there, what a beautiful and peaceful place! However, the actual docter visit left ALOT to be desired. I left not hardly knowing anymore about her progress than when I came in! I was and still am stunned to say the least (my ex and I atleast agreed on that)

    I am trying to get another visit with a docter that will SIT down and talk WITH me/us -

    Has anyone ever had to change Docters at Shriner's?

    Kelly B.

  5. #5
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    Kelly,
    You can ask for another doctor at Shriners. There is something you need to do though. Call the Care Coordinator, your daughters doctors nurse, and ask her to please send you a copy of the report the doctor did. The Care Coordinator is also a wonderful person to ask questions to. Tell her how confused you were and she will usually go over the appointment with you and let you know what was said. It can be very confusing. To me, I felt lost in the fog. I burned up the phone lines to the Care Coordinator. She was great and I really appreciate her. When it came time for Crystal's surgery, she and I talked not as Care Coordinator to patients parent, but parent to parent. Ask her what the treatment recommendation was, what was the degree of curve, tell her you were scared and confused. They deal with this on an everyday basis. If they recommended surgery, is she on the list, how long do they expect the wait to be. Crystal was put on the surgery list and was told it would be at least a year before surgery. Guess what, they did her surgery 5 months later, to the day. We go back on the 27th of this month, hopefully to get the approval to have her surgery done on her feet. When we left from our first Shriners appointment, Crystal was in tears, because she wanted her back fixed, and I was terrified, and of course my husband was the rock we both needed that day. My middle daughter has scoliosis and knee problems and our youngest daughter has kyphosis and wears a brace. Boy, all diagnosed on the same day.

    Surgery is scary, but as far as we are concerned well worth it. Crystal was back to school at three weeks post op, went to her prom at four weeks post op and was back in the show pen with her show sheep at 12 weeks. Surgery has actually accelerated her life, not slowed her down.

    Send me a private message if you want to talk more. I'd be happy to share my experience.

    Nikki

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