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Thread: Appointment with Neurosurgeon today

  1. #1
    Join Date
    Jan 2008
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    Default Appointment with Neurosurgeon today

    Good news: yes, she has a Chiari I malformation, and things are "tight" where the cerebellum and base of skull, top of spine area meet. Doesnt think it is worthy of surgery now. But want to monitor it with a MRI of the spine every 6 months. Doesn't think it is the "cause" of her scoliosis.

    Mediocre news: There is more than normal amount of CFS at the cerebellum (up form the case of the skull from the Chiari). Wants a full MRI of the brain to see if anything is causing pressure/pushing down to cause it. Next MRI scheduled for 8/1.

    "Bad" News: MDs office is on the 10th Floor. At some point after we arrived all the elevators were down and we had to go down 10 flights of stairs. After 2 flights dd wanted to be carried. I guess actually the good news is we didnt have to walk UP 10 flights.

  2. #2
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    Default I am glad you are getting some information

    that you can uses. Scary as it may be I am guessing that it is better than not knowing.

    I am glad you had to carry her down as opposed to up too .

    Anne

  3. #3
    trek is offline INCIIDer - A Community Creator
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    Hope next month's MRI will help clarify tx plan.

  4. #4
    RANSRN is offline INCIIDer - A Community Creator
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    Hate to hear all of the news, but now that you are getting answers you can formulate a game plan. My friend is still available if you want more info on the Chiari. ((HUGS)) Susan

  5. #5
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    For a lot of complicated reasons, decided to wait on the brain MRI, after talking with Pediatrician, I really dont want to put her under general anesthesia 3x in 6 months as there are studies out there re: repeated expoures and kids under the age of 5 not being great for neuro development. I will likley do both MRI at once (repeat of spine and brain study) later in the year. I just want to let her be for a bit as well. We get the brace tomorrow and have to go through the whole process of getting her used to that, which if the first fitting is any predictor, it isnt going to be fun.

  6. #6
    Troy is offline INCIIDer - A Community Creator
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    I hope the transition to the brace goes well -- I think most kids adapt over time and it can become second nature to them.

    I am with you on the MRI stuff -- The risk of this kind of "routine" intervention really needs to be factored into anything you do, especially given how hard you (and she) are already working to address developmental issues.

    GL.

  7. #7
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    Thanks Troy. She did much better at home trying it on than at the Office. It helped her twin though it was interesting. Then I turned on the Wiggles so she would forget she had it on...

    C went through wearing a helmet for 4 months as an infant and she took to it fine. I think she, like alot of kids, just go with whatever is the reality of their life. It was just hard watching her trying to figure out how pick something up off the floor since she cant bend in the middle.... It is going to be a long 10 years with this thing (actually the yearly replacement of this thing...) It is hot, it is stiff, but at least it is pink with purple butterflies.

    Oh, and just this morning as we were walking out, got a call from one of the Peds in the practice we go too. Long story, but she and her dh are good friends with the Neurosurgeon and got through to him (My reg Ped couldnt reach him before she went on vacation) and got his complete OK to wait to do both MRIs at once. Whew, one decision I dont have to sweat!

    Thanks for the support,

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