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Thread: 5 Year Old Daughter had Growing Rods (Shilla) Surgery

  1. #1
    Join Date
    Jan 2010

    5 Year Old Daughter had Growing Rods (Shilla) Surgery

    Hello everyone,

    First of I just wanted to thank all of you who have posted in the past. Your stories and experiences have helped myself and my family through a difficult time. I just wanted to take a minute and share our story for families who may go through a similar experience. I looked everywhere for answers and many of you posted your stories and it really helped us out.

    My daughter, Anna (5), was diagnosed in August with scoliosis. She had 2 curves, one of 58 degrees and another of 24. This came on so suddenly, surgery was our only option. We were accepted at Shriners in St. Louis with a little help from some very generous people and Anna was in the care of Dr. Luhmann. He decided to cast her for 10 weeks to ease her back into the radical change it would encounter with the Growing Rod surgery. On January 11th we went into Shriner's for her procedure. Dr. Luhmann explained the Shilla procedure to us instead of the growing rods. He told us that rather than the 4-6 month lengthenings, it would be more like up to 2 years before any other work was needed, not counting a break of a rod. The surgery was still 2 rods on each side of the spine, but had 3 screw placements and almost like a track for the contraption to slide on as she grows and moves.

    Apparently this is a fairly new surgery option but he says that he has had much success and us not having to go in 2-3 times a year for further operations was truly a blessing and unbelievable news.

    She also had a filum that needed to be removed, so they doctors did that all at the same time. The filum was removed in about 30 minutes. We then got a call that the rod procedure was under way. Nurses called every 2 hours with updates and then after 5 hours of waiting, we got word they were finished and Anna was doing great. 1 hour after surgery we were called into recovery to see her. Her curves went from 58 to 23 and 24 to 8....Amazing!! Just a word of warning to those who will go through this, when they are finished your child will have a puffed up face. I guess laying face down for so long causes the swelling. It kind of startled us at first.

    Due to the filum being removed she was made to lay on her back for 48 hours without sitting up. Every few hours they rolled her from side to side. This was hard for her because all she wanted to do was sit up. Also, she couldn't have any water/ice/soda for 24 hours, which was her biggest complaint. They had her on antibiotics, and iv, and morphine.

    The first 2 days were not as bad as I expected, partly because the morphine drip kept her pretty drowsy.

    Day 3: They decided to let Anna eat and drink soda, , which was a great thing because 2 days of Daddy I am so thirsty was enough. Her appetite was non existent but she struggled through some crackers and pudding. The nurses sat her up in bed slowly every 30 minutes until she was basically all the way up. Next was the hard part, getting out of bed and into a chair. Anna was extremely scared and very unsure of herself. After 10 steps and about 100 " I can't do this" we made it to the chair where she sat and watched tv for about an hour. Every few hours they would get her up and out of bed, walk a little, sit a little and then try and eat again.

    Day 4: Pretty good day overall. The night went well with a lot of sleep. 3 walks to the play area mixed in with some tv, coloring and eating. In the evening they took her off the morphine and put her on hydrocodone. The evening walk without the morphine was rough but when it was all over with it was like a light switched on and Anna was herself again. She sat up in bed mostly all night playing bingo and coloring.

    Day 5: All of the tubes, iv, monitors were removed and they told her if she had a bm and ate we could go home. Success! Anna made cards for all the unbelievable nurses at Shriners and hand delivered all of them. Getting in the car was shaky at best and the bumps on the way home didn't help.

    2 weeks since surgery:

    Being home was not as easy as I imagined. 24 hour nursing and morphine go a long way. 4 days after dismissal we took Anna off the pain meds. She was very constipated and screamed in agony over her stomach. 3 or 4 really tough nights because of this and 1 emergency room visit to make sure nothing else was wrong. Surprisingly the back pain has been pretty non existent, which amazes me because i would be curled up into a ball in pain. We had to give her stool softener to help with the bathroom issues. She is now going up and down the stairs on her own, playing on the floor, bending over, and is almost sort of back to normal. Next week she will be returning to school.

    To anyone who has to go through this, my prayers are with you. Hope this helps.

  2. #2
    Join Date
    Apr 2007
    Seattle, WA
    Hi Jeff,

    Thank you for posting about your daughter's surgery and amazing sounding recovery. She sounds like such a trooper.

    It's so great that she doesn't have to get surgery every six months but can go two years or more with the new type of Shilla rods that were used. I heard of those rods in the congenital scoliosis yahoo group that I belong to.

    I hope her return to school goes smoothly next week and her overall recovery with the rods continues to go really well.

    All the best,

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

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