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    Hi, I am a new member to the group. My 14 year old son, Nolan, was diagnosed with idiopathic scoliosis about a year ago. His curvature is at 60 degrees. When Nolan was 10 he was diagnosed with a rare brain tumor called a craniopharyngioma. During the resection of the tumor Nolan suffered a stroke and developed a left side weakness. We spent 3 months in a rehab hospital learning to walk. He developed dystonia also. The doctors think that maybe the weakness, muscle loss, and dystonia may have contributed to the scoliosis. Anyway we have been monitoring him since September. We just had a doctor's appointment this past Monday, the 16th. The doctor is scheduling a surgery for June or July. This scares me because Nolan has a condition called panhypopituitarism, which is a total loss of pituitary function. He also has diabetes insipidus which can cause problems with his water/sodium levels. He can either become dehydrated or overhydrated. Can anyone tell me what to expect?

  • #2
    Welcome Teresa.

    I don't know if many parents on this list have children with such complex medical backgrounds as Nolan has. Hopefully some will post to let you know you are not alone. My Braydon will turn 14 in May. He was born with congenital scoliosis and has had treatment (surgically) for it since infancy.

    Fusion surgery is a HUGE procedure. Nothing to be taken lightly. However, there are other conditions and situations with Nolan that may mean his scoliosis will continue to get worse, and that having fusion surgery may help him in the long run. Hopefully your surgeon understands the other conditions FULLY before operating. I'd think a coordination of a team of docs is necessary to give him the best outcome possible. I'd be asking the surgeon if s/he's willing to put together a meeting of the masses to help Nolan.

    Best wishes and keep us posted.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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    • #3
      Teresa,

      I agree completely with Carmell.

      I hope parents out there who can contribute to this thread post about their experiences.

      Good luck.

      sharon
      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."

      Comment


      • #4
        Mom talk.

        Originally posted by teresa.meyer View Post
        Hi, I am a new member to the group. My 14 year old son, Nolan, was diagnosed with idiopathic scoliosis about a year ago. His curvature is at 60 degrees. When Nolan was 10 he was diagnosed with a rare brain tumor called a craniopharyngioma. During the resection of the tumor Nolan suffered a stroke and developed a left side weakness. We spent 3 months in a rehab hospital learning to walk. He developed dystonia also. The doctors think that maybe the weakness, muscle loss, and dystonia may have contributed to the scoliosis. Anyway we have been monitoring him since September. We just had a doctor's appointment this past Monday, the 16th. The doctor is scheduling a surgery for June or July. This scares me because Nolan has a condition called panhypopituitarism, which is a total loss of pituitary function. He also has diabetes insipidus which can cause problems with his water/sodium levels. He can either become dehydrated or overhydrated. Can anyone tell me what to expect?

        I can't tell you what to expect since every situation is different. I can tell you that if you don't think this is the best treatment for your son, then talk to the doctors that specialize in the other areas of treatment. Get their opinions about what to do and if they think that this is a good treatment for Nolan. I would also make sure that the hospital you are going to is one that can recognize the pituitary issues and can handle it.

        I imagine that the muscle weakness and dystonia are consequences of the brain tumor and treatment. If you want to wait until Nolan is stronger, or until you find the right combination of physicians and hospitals, its ok to cancel for now. If you aren't "all in", Nolan will likely be more scared himself.

        Best wishes.

        p

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        • #5
          Right now Nolan is all for doing the surgery because he is so miserable. We have discussed it at length. We took him to more than one doctor and they all agreed he would have to have the surgery sooner or later. Nolan wants to do it now so he can get some relief from the constant aching. I know there will still be pain, but how much? What can we expect?

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          • #6
            My son was fused at age 13, 5+ months ago. He was initially diagnosed with AIS, but later one surgeon's opinion was that it was not AIS, but that the curve was driven by a marfanoid condition (as opposed to full-blown Marfan's of which scoli is one common characteristic). Looking back, I also suspect his curve began long before it was diagnosed.

            He had no pain before surgery, and he has none now. He actually didn't have a lot of pain after the first few days--and he doesn't remember the first few days at all. At 2 weeks post-op he was completely off any medication, including tylenol. I understand this is a little faster than most kids, but I have read of quite a few who are pain free soon after surgery. Surgery is no guarantee of freedom from pain, of course, and your son has complex medical concerns, but in general most kids find the temporary pain of surgery well worth it.

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            • #7
              My kid was on pain meds longer than most around here but she still is very glad to have had the surgery. Of course she really had no choice but still.

              Most kids back bounce back pretty quickly... that's the take home message.

              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."

              Comment

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