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Thread: Its appointment time for David

  1. #1
    Join Date
    May 2012
    Location
    Illinois
    Posts
    9

    Its appointment time for David

    I can't believe how fast time has gone. Davids first visit to Shriner's in St. Louis is on Sept. 4th. In addition to that he goes to Ped. Neurology on Friday the 31st of Aug. I figured we would have to wait a few months for the neurologist.

    With two very important visits coming up I am afraid I will not ask all the questions I want or wont catch all they tell us. I have been trying to write everything down to keep it straight. I plan to take notes if needed at the appointment.

    We don't really know what to expect at the neurologist. Davids headaches have started again and they want to discuss his hand tremors. My son keeps asking what kinds of tests they will run and except for the reg. neuro exam I do not know. Couldn't find much good info on line.

    If any have experience to share I would love to hear about it.

    Thanks for reading.

    Sara

  2. #2
    Join Date
    Mar 2010
    Posts
    2,755
    Hello,
    I don't know if the protocol is the same today as it was back in 1985 when I had my neurology visit. I had a CT/myelogram and an EMG to rule out any problems with the pain I was having in my left arm due to scoliosis. They didn't do this at the initial visit. On the initial visit it was just the basic neuro tests like checking strength symmetry in both arms and legs, checking reflexes, and walking on tiptoes and heels. I hope you find this helpful and you can get some answers for your son.

    Best wishes!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  3. #3
    Join Date
    May 2012
    Location
    Illinois
    Posts
    9

    Smile Great appointment at Shriner's

    What a wonderful place Shriner's St. Louis is! Everyone we talked to was friendly and helpful. Even David started to relax a bit.

    We saw Dr. Luhmann. Felt very comfortable with him. He took the time to explain everything and reassure us that all is ok. Our new x rays showed very little change. He explained that David has Type III Congenital Scoliosis. Meaning that he has mixed defects in his Thoracic spine. I wanted to know where the hemi was and was told that there were a couple and a few wedges, and a couple bars. Seems the whole thing is a mass of messed up vertebra from T-2 through T-12. Everything is just all jumbled together. As a result, Davids torso is unable to grow completely and will be a little shorter. Not a big deal at all!

    We will be having an MRI next week or so to check out a few things but as of now Dr. Luhmann doesn't need to see us for 9 months. I feel like we can relax a little now. I understand better what is going.

    Thanks for reading.

    Sara

  4. #4
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    That's very good news about the lack of progression! Maybe all the vertebra are balancing out.
    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."

  5. #5
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162
    Hi Sara,

    I am so glad to hear how well David's appt went. I knew you would love Dr Luhmann and the St Louis Shriners. We had a wonderful experience there with Leah's VBS surgery, and Dr Luhmann continues to follow her.

    Take care, and thanks for updating!
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

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