Hi Concernedmom13 & Daughter-
I can relate to you and your's daughter's experience. I was diagnosed with Arnold-Chiari 24 years ago, at the age of 20. Before my diagnosis, I was told my headaches were caused by stress, migraines, TMJ, using the birth control pill, and impacted wisdom teeth!!
I strongly urge you to seek a second opinion! I do not know where you are located, but I know of 3 neurosurgeons, who treat Arnold-Chiari on pediatric/adolescent patients:
1.) Dr. Arnold Menezes - University of Iowa - (319) 356-2237 (CST)
2.) Dr. Jon Weingart - Johns-Hopkins - Baltimore - (410) 614-3052 (EST)
3.) Dr. Kerry Crone - Children's Hospital - Cincinnati - (513) 221-1100 (EST)
When I needed to seek a consultation for surgery, most doctors will review medical records and MRI films in advance of an outpatient consultation. If they the specialist(s)/surgeon(s) can help, they will follow up with a phone conversation and/or schedule an outpatient consultant to confirm their diagnosis. If the surgeon(s)/specialist(s) are not able to help you, they may be able to make a medical referral or recommendations as to what can be done to improve the quality of your daughter's life.
Please note these doctors will unequivically tell you the good, the bad, and the ugly about your daughter's case and they will not necessarily recommend surgery. Based upon my personal experience with these neurosurgeons, they try all non-surgical options first, leaving surgery as the last alternative, unless it becomes a life threatening situation.
Keep in touch,
PFrank
Quote:
Originally Posted by concernedmom13
Just had my 14yr. old daughter to All Children's Hospital for migraine treatment. Upon getting results of the MRI = chiari 1. The docs said the didn't feel this was the cause of her migraines as it is only 6mm and they did a mri "flow study". they said the next step would be a "pressure" study, but it would require a spinal tap and they did not want to do that.....sent us home with no help/still have migraines daily; getting worse, no meds at home have helped; 6 meds intravenous did not help....i can't help but think that it is the chiari causing her pain. she has had a migraine/head pain since january and was an avid/constant soccer player. I am getting a 2nd opinion; but want to find the right doc which seems hard. Any advice from someone who has had chiari? thanks so much.
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