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Thread: Updates

  1. #1
    Join Date
    Apr 2012
    Posts
    13

    Updates

    My DD#2 was fused T2-L5 on July 3rd of 2012. She had complications, to say the least. Her body rejected vicryl(sp?) stitches, so her incision opened up on day 8. She had to be opened back up all the way to the metal, and reclosed. Then on day 17 she reopened and it turned out she had a pseudomomas infection, and she had to be irrigated and debrided and restitched. She ended up requiring a blood transfusion after the third surgery. She is now healed up, but has a keloid on the lower portion of her scar where the infection was. Now I have a beautiful 14 year old and a pool, and she won't wear a bathing suit in front of anyone but her best friend and her family. It breaks my heart to see her sisters and friends playing in our pool while she watches from the sidelines. She can't tie her own shoes or sit in the grass with her friends. I know there are kids in wheelchairs and worse who would be happy to trade places with her. I am hoping as she gets older she will gain some confidence about her scar. Someone saw the keloid and apparently got grossed out. I don't know who this was. She lost a lot of strength from being down for an entire month, instead of the anticipated 4 or five days. She is in physical therapy, and at 8 months out is in the gym regularly, and ran two full miles without stopping just this week. We are approaching the one year mark from finding out she even had scoliosis, and it has been exhausting. That being said, this week feels like the first time I can see things getting back to normal for her. She is excited about an upcoming dance, and hopeful that the dermatologist can help with her scar. At the time of her diagnosis, we learned our other daughters also have scoliosis. DD#1 is now almost 16. She has not progressed from approx 13 degrees, and has been released from observation. DD#3 is progressing about 1 degree a month at age 9, and was at 19 degrees in January. She is going to be seen every 3 months, and from what I can tell, this early of an onset is not good news. Basically, the literature I have seen says that 95% of children who progress at this rate before age 10 end up requiring surgery. I am terrified at the thought of another daughter going through this. I feel like I can't do this anymore, when I know good and well I don't have that option, and that I am being selfish considering I am not the one who even has to have surgery. I know there are so many worse things parents are facing in the world, but this is just overwhelming at times. When I am washing my youngest daughter's hair, I see her shoulder blade protruding further every month. I think that I know what I am going to hear next month, and it terrifies me. My husband told me after DD#2 surgery that he couldn't do this again, and I felt so angry with him for being so selfish, and now I am feeling the same way.
    DD #2 fused T-2 through L-5 07-03-12
    DD #3 9y/o progressing. 19 degrees as of 01/13

  2. #2
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,184
    I am so sorry that this road has been so rough for your daughter and family. What an ordeal.

    After all your daughter went through, if a plastic surgeon could make the scar much less noticeable and allow your daughter to feel better about it, that might be the way to go.

    As for your younger daughter, have you considered vertebral body stapling or tethering? These are non-fusion surgical techniques that can be used with growth remaining to avoid fusion. Given that your husband and you are emotionally exhausted, the stapling/tethering would help not just your daughter but you and him.

    http://www.vertebralstapling.com/

    Hang in there. Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #3
    Join Date
    May 2009
    Posts
    3,745
    hi Chrissy's mom..
    as Sharon, mentioned, a plastic surgeon, or a dermatologist, can probably help with the scar...
    i had a keloid on my chest, a common place for them to develop, after
    i had a catheter removed...i had catheter for IV antibiotics for a long time for Lyme Disease....
    anyway, a few visits to dermatologist for some zaps with a laser, years ago, and the keloid slowly disappeared...it went flat and then went away completely...
    i hope your dermatologist uses lasers...if not, you might want to change to another
    doctor...
    but i do think the scar may turn out to be the least of the problems...

    does you daughter have a therapist she can vent to...someone objective
    who can listen...? i do not know if she is willing to see a therapist, but
    it is a suggestion i bet has been made before...

    wishing you the best...
    jess...and Sparky, the wonder puppy
    Last edited by jrnyc; 03-23-2013 at 03:58 PM.

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