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Thread: Newly Diagnosed - Mom's a Mess

  1. #31
    Join Date
    Apr 2007
    Location
    Orange County, CA
    Posts
    47
    Thanks Rebecca. I'm not even sure what the process will be with this new doc. Thursday's appointment is kind of like a second opinion - but I am planning to switch to him since he focuses on pediatric spine patients only.

    I am a hospital administrator and one of the spine surgeons on my Medical Staff saw Mackenzie when I suspected she had scoliosis. He was really doing a favor for me - and thought I was over-reacting (until he saw the x-ray). I took the x-rays he did to the appointment with the spine specialist at UCI Medical Center. The doc at UCI did fellowships in both peds and adults - but I want someone who specializes ONLY on children.

    I'm hoping Dr. Skaggs will take a new x-ray to see if her spine has progressed. But, again, I don't really know what will happen. We're pretty new to this (diagnosed in late March 2007).

    Mackenzie starts school next Wednesday (the 5th). She will be in her first year of high school - and EVERYTHING revolves around how she looks. The brace definitely cramps her style!

    I'll keep you posted - and thanks for the good thoughts.

    Lisa

  2. #32
    Join Date
    Apr 2007
    Location
    Orange County, CA
    Posts
    47

    Mackenzie's 2nd opinion

    We just got back from Childrens LA. Mackenzie was seen by Dr. Skaggs for a second opinion. The good news is that her curves are holding. Dr. Skaggs said she has a double major curve - both at 37 degrees. The first surgeon said she had a 40 degree thoracolumbar curve with a 28 degree compensatory thoracic curve. Not really sure that it makes a difference.

    The bottom line is that Mackenzie has two curves. I am a little concerned that the thoracic curve went from 28 to 37 in the 5 months since we saw the first spine surgeon - but that may not really be true since they only measured the bottom curve and ballparked the "compensatory" curve. And Dr. Skaggs said there is a 3 -5 degree range of accuracy. He was unwilling to say whether the thoracic curve had increased since he didn't take the original x-ray, etc, etc.

    We both liked Dr. Skaggs. The office was really well run and organized and everyone was very nice. His spine fellow (Dr. Chen) was a good guy too.

    Forgot to say - her curves in her brace were 27 upper and 34 lower - so good correction on the top, but not so good on the bottom. They weren't thrilled with Mackenzie's brace - but since she's only had it a few months, said that it would work ok. She's to continue to wear the brace and we go back in 6 months. He agreed with the first surgeon about the 18 months of growth time remaining for Mackenzie.

    We were very honest about Mackenzie's brace time and he told us not to make it the focus of our lives. I liked that about him.

    Thanks to all - especially Renee and Stacey - for their support through all of this. I feel much better knowing her curve didn't increase!!!

    Sorry this is so long.

    Lisa

  3. #33
    Join Date
    Dec 2005
    Posts
    40
    Hi Lisa
    So glad the appt went well, I got your PM's and going to repsond but just noticed these posts and saw how you said Skaggs told you not to make wearing the brace your main focus in life. Which made you happy so I wanted to comment that Dr Skaggs is good about stuff like that. For instance he always tells us to "let Cole be a kid/boy and play etc...without constantly worrying about this that or the other with his severe curve and rods". I too love it when he says comments like that. Ok I will go review your pm's again and respond to them.
    Stacey

  4. #34
    Join Date
    Jul 2007
    Posts
    9

    Macks Mom

    Lisa,

    Sounds like you had some good news, at least the curve isn't getting worse.

    I'm from So.Cal. and am very familiar with CHOC, CHOLA, and UCIrvine. I was a sales rep for a home health company when we lived there so, know the area well. This is off the subject of our kids but, I'm finishing up my BS in Healthcare Admin this Nov so, hope I can find something I like and will get hired after being a stay-at-home mom for the last 8 years. Enough of the little side trip.

    I was glad to hear the doc say not to worry so much about the brace being on 23 hours. Spencer is going into 8th grade on Wednesday and she too is of the age that looks count. I'm hoping our doc will have the same attitude about it.

    We're both settling into the whole scoliosis adventure and the brace has almost become a part of her life. Not sure I will say the same thing once she is back in school. We'll have to see.

    I'm thankful that I found this forum and this thread...don't feel so alone.

    Thanks for the update!
    Rebecca

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