Brain, Pituitary and Skull Base Tumor Forum Expert Forum
9 yr. old with Chiari and Scoliosis
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9 yr. old with Chiari and Scoliosis

I have daughter (age 9) who has been recently diagnosed with Chiari Malformation and Scoliosis.  The CM was discovered by a pediatric ortho after a TLC MRI to discover the cause of her progressive idiopathic scoliosis.  Over the past two yrs. she has suffered from migraines of increasing severity and frequency, particularly over the past 7 months. She was referred to a neurologist after her MRI by the ped. ortho (who feels that she is having a "top down" issue), an inexperienced Neuro doctor, didn't agree.  She ordered no CT scan, no brain MRI, just looked at the TLC MRI that showed the Chiari and stated that it didn't look that severe to her. She ordered Elavil to combat the migraines, a topical cream for her motion sickness, said she'd order physical therapy for the scoliosis and a test (ABRE) to see if the hearing issue is brain-related. This was several weeks ago, none of those things have been ordered. My daughter states that the pain in her spine continues every single minute of the day. Her migraines occur at least once a week, this past weekend she had one for 72 hrs w/vomiting. Any advice that you may have as to what direction we should take next, would be most gratefully appreciated.

1382849_tn?1337552730
Dear Kswasson44

It is difficult for me to give you a formal recommendation without looking at the images.
I recommend you take your daughter to be seen by a pediatric neurosurgeon.

Thank you
5 Comments
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657231_tn?1390151580
The doctor sometimes takes a while (busy you know!) so another place to try is the chiari forum for patients here - they may have some resources in their health pages on in the forum.

I am so glad you are battling for your daughter - the doctor sounds like she is overwhelmed by this case and so another consult is needed for sure. There are specialist clinics that do only chiari.
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Avatar_m_tn
Thank you so much for your prompt response, Doctor.  You had treated my oldest daughter (from Kentucky) last year, just a few days after Christmas, for a traumatic brain injury.  Your compassion and outstanding care for her, prompted me to solicit your advice here.  We live just outside Columbus and appreciate the suggestion that we seek the skills of a pediatric neurosurgeon.  Neurology just hasn't been helpful, thus far.  I do appreciate your taking the time to read my question and to respond.  God bless you for your kindness...

Kimberly W
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1382849_tn?1337552730
Hi Kimberly,

Such a small world!

I will be glad to see all the images and give my personal opinion (free of charge) on her situation,

If you would like, please send her films to:

410 W. 10th avenue,
N1049 Doan Hall
Wexner Medical Center
The Ohio State University
Columbus, Oh
43210

Thank you and happy 2013,

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Avatar_f_tn
My teen has Chiari and the hospitals here in the UK have basically told her to learn to live in pain. Its destroyed her life, ruined her physical career aspects. The meds have caused no end of problems elsewhere whilst doing nothing to ease the pain of chiari. She's had mri, xrays of brain and spine, even counselling as they claim the pain is partially psychological.

Totally sympathise with you x
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