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Thread: New here & just trying to figure out what the best options are for my daughter. Help

  1. #46
    Join Date
    Mar 2010
    I'm sorry to hear your bad news. Don't give up. That is one doc's opinion and suggestion. Maybe you can get her in to see someone else and see what they have to say. They can do things to prep her for blood loss BEFORE surgery. They have a nice hormonal drug called epogen that causes the body to build blood at a much faster rate. This will sometimes eliminate or greatly reduce the chance that they will give her blood transfusions. There are also other blood conserving techniques that they can utilisize. It seems that her heart condition is the big limiting factor here. You need the BEST in both heart and spine care for her. I hope you can figure things out. My well wishes are with you both. Take care.

  2. #47
    Join Date
    Aug 2004
    Quote Originally Posted by Sierras Mom View Post
    I can't remember if it was the nurse or the doctor I asked but I had asked if this would eventually harm her internal organs and they said "no" but I've looked the infor up on the net and it says it does harm them eventually, now I'm really scared about this. Has anyone had experience with this?
    Hi Kellie,

    Thanks for the update.

    While it is always good to double check and get second opinions, etc. - I learned a long time ago that 'as a general rule' if the doctor tells you something - go with that over information you find on the internet, again this is generally speaking.

    There is all sorts of information on the 'net - some accurate, some not.

    More importantly, the doctor treating your daughter is familiar with HER specific case and when you pose a question, he or she is responding knowing all the specifics of HER case - and/or perhaps weighing benefits vs. risk, etc. So if you want to ask Dr. Samdani, again, for clarification you should do that. Or even ask another orthopedic surgeon to get a second opinion on what he said.

    But I learned a long time ago that you can scare yourself to death reading stuff on the internet, a lot of which may or may not apply in your child's specific case.

    Hope this helps.

    Hang in there - we are here for you.
    Last edited by mariaf; 12-19-2011 at 09:23 AM.
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

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