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My 17 year old daughter was just diagnosed with Chiari I Makformation

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barbara23860
barbara23860

My daughter has been suffering with headaches for approximately 10 months and they started after she had a concussion, so we assumed that the consistent headaches, hand/foot numbness, neck pain was all associated with that, however, doctor 1st ordered a parasinus(think that was name) x-ray, it showed a 1.7 cm mass on the nasopharynx, unclear of exactly what it was. She then had an MRI and was diagnosed with Chiari I Malformation. We went to see a Neurosurgeon and he was very thorough but now we are in the decision making process.....my daughter says even if there is a possibility of no more headaches and less or no more neck soreness...and if I will eventually need the surgery why not do it now and be done? Any advise is appreciated.

0 likes, 23 replies

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  • whodatbritchick
    whodatbritchick barbara23860

    Posted

    My daughter (same age) was diagnosed last year around Easter.  The symptoms were acute (nothing triggered them).  Was numb down right side, nausea, symptoms likened to vertigo, headaches and neckaches.  We saw a neurosurgen (who was amazing). Told us the only option was surgery, and scheduled her two days after seeing her.  Post op we had to go back every month for a check up up to September/October then every couple of months, her last check up was February this year.  She is symptom free, still has numbness (he said if it hasn't gone after a year, then she would most likely have numbness for the rest of her life).  Quality of life is 100%.  I would say go ahead with the surgery if that is what the doctor advised.  Where are you located?  My daughter is not on this site but I can get her to chat with you if you would like that.

     

    • barbara23860
      barbara23860 whodatbritchick

      Posted

      We are in FL - where r u? We saw a neurosurgeon at neumors childrens hospital! My daughter is not on this site either but I would love to have the two of them chat.
  • whodatbritchick
    whodatbritchick barbara23860

    Posted

    New Orleans, our neurosurgeon is at Southern Brain & Spine (we had a recommendation).  What did the neurosurgeon tell you?

    • barbara23860
      barbara23860 whodatbritchick

      Posted

      The neurosurgeon said that surgery was certainly the only way to at least allow more space. He was not necessarily pushing us into surgery by any means, he recommended a recheck in 3 months, although I think my daughter is leaning towards getting the surgery as she is tired of the headaches/neck pain. Still just a big decision. Would love to have our girls connect.
    • Linleel
      Linleel barbara23860

      Posted

      Surgery IS the only way to get more space. Logically speaking, if you look at the parts of the brain that are affected: The cerebellum progressively gets squished until it's pushed up against the brain stem and then pushes out of the foramen magnum. Not only are there symptoms for the cerebellum being crowded, it can also affect the brain stem functions. With some cases, there is already too much damage to the cerebellum that is irreversible (not trying to scare you, just trying to give a realistic picture). So, for me, there was no decision to think about- I got the surgery before any more areas of the brain were damaged or compromised. Sometimes you don't get all functioning back because it is irreversibly damaged. Brains can be very tricky. 

    • barbara23860
      barbara23860 Linleel

      Posted

      She is not showing those kinds of symptoms, she has suffered frim constant headaches (sometimes dull/ sometimes more intense) but everyday. Some tingling in hands/feet and neck pain, so hoping alk of that is reversible
    • whodatbritchick
      whodatbritchick barbara23860

      Posted

      As I said before, my daughter is 99% recovered.  She still has the odd headache, neck pain is totally gone and her numbness is going to be with her always.  Hers was so acute it was incredible.  The frustration is the biggest problem my daughter has.

       

  • b2wc97455
    b2wc97455 barbara23860

    Posted

    Dear Barbara,

    Just to let you know, 2 yearw ago I was diagnosed with chiari, I detested to have surgery, but as the time went by, i could not cope with the pain and had no quality of life, so I went back to my neurologist and took his advice, i have surgery 3 months ago, I am now drug and pain free. Make sure to have second opinion or go to the surgeon who had done lots of surgery

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