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Anterior and Posterior Spinal Fusion - Recovery Concerns

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  • Anterior and Posterior Spinal Fusion - Recovery Concerns

    My 14 year old son had an Anterior and Posterior Spinal Fusion for Neuromuscular Scoliosis on July 10th and 24th. His curve was corrected from approximately 123 degrees to 40 degrees. In addition to Scoliosis, he has Spina Bifida (L4-L5), Arnold-Chiari Malformation (Type 2), Syringomyelia, Shunted Hydrocephalus (Right and Left VP Shunts), Autism, TS, OCD, and Developmental Delay (this is the edited list). He has been home now for seven days and I have some concerns regarding pain management and recovery. Upon discharge he was prescribed Tylenol with Codeine (because he does not swallow pills and due to sensory issues will not eat the types of foods pills could be crushed and placed into) and Valium. Unless the medicine is given every four hours his pain is severe (it is prescribed for every 4-6 hours). As the week progressed, I expected at the very least to stretch the medication to every 6-8 hours. Also, he is only sitting up in the hospital bed a few hours a day (he is paraplegic). We finally got a "canvas-type" high-back wheelchair Friday afternoon, but I have not as of yet tried to transfer him into it. Due to his neurobiological needs and sensory issues, I am trying to work at a pace that is good for him as to encourage him to move (sit up), but I am beginning to worry he is not progressing fast enough. I would truly appreciate any shared experiences from other parents who have children similar to my son.

    Thank you.
    Last edited by LCasey; 08-09-2009, 07:16 PM.

  • #2
    My son "only" has scoliosis but I can say that a lot of people take many weeks, if not months, to taper off the meds. Since his surgery was only around 2+ weeks ago, and it was both anterior and posterior, he may just need a longer time on his discharge meds than others. I know that for my son, walking helped the pain a lot. Since your son can't walk, maybe he just needs a longer time on the meds for that reason as well.

    I wish you all the best with his recovery from this surgery.
    Laurie

    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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    • #3
      Originally posted by laurieg6 View Post
      ....a lot of people take many weeks, if not months, to taper off the meds. Since his surgery was only around 2+ weeks ago, and it was both anterior and posterior, he may just need a longer time on his discharge meds than others...

      I wish you all the best with his recovery from this surgery.
      Thank you Laurie. I am going to call his doctor today because I am afraid we will run out. I know that they don't like to give kids narcotics for long periods of times. I hope we don't have any problems getting more pain medication.

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      • #4
        Good luck with your son's recovery --- for your situation, do you think they might send a home care nurse or therapist to your home to help you with your son? - even a couple time a week might help you immensely! I am from Canada so not certain how it works in the U.S.
        good luck & keep up the great work -

        our 10 yrs old Ben has scoliosis (now 96 degrees) & is on the waiting list for surgery this fall - he is also special needs (has Smith Magenis Syndrome (SMS)) so we are very worried about him having surgery as he does not know how to vocalize well or tell me he is in pain - at this point he does not show any signs of discomfort/pain with his curature so my husband is having a difficult time giving permission for something that will obviously put my son through terrible pain today & maybe even for life - we are just terrified!

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        • #5
          Thank you Nancy. We have a nurse who comes out to help me turn him and such during the day. I would love to be able to get him physical therapy in the home, but doubt that will happen. I understand what it is like having a child who does not express pain in the "typical textbook" fashion. Like Ben, my son does not exhibit pain through vocalization, crying, and other "typical" means. What we did which was helpful (but took a while for the medical staff to understand or accept) was to have his psychiatrist write a brief letter with a list of his unique pain indicators and fears to keep in the front of his chart. Additionally, we devised a "personalized pain scale" of sorts. Instead of frown and smile faces to indicate pain on a scale of one to ten, we put how he reacts to pain (i.e.: excessive compliments, "Hallmark sayings", fast breathing, and so on). Of course his vital signs were often a good indicator as well. I don't know if anything like this could benefit Ben - I am not familiar with Smith Magenis Syndrome?

          How long did you have to wait to schedule surgery and when will you find out the exact date? When I made the decision to have my son's surgery, we made an appointment and picked the date with the surgeon. In total we only waited about four months - which worked well because it enabled him to finish out the school year, enjoy his birthday, and get a second medical opinion.

          I was also worried about having the surgery, but finally decided after the second opinion that we had to try this. I was worried about possible impaired respiratory and organ function if left untreated. There are some days I wonder if I made the right decision....Today is one of those days.

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