I am so confused. I found out that my 17 year-old daughter’s MRI from 3 years ago shows a Chiari 1 malformation with a 5mm herniation. I was not given this information until a week ago when her pediatric neurologist called for the results since they haven’t been in her medical file for the past 3 years. He dismissed the chiari and subscribed an anti-depressant. (yeah, thanks.)
My daughter has had debilitating headaches/migraines for the past 3 years. With NO relief! It came on with a sinus infection and never went away. During this time she has had reconstructive surgery on both of her feet for “flexible flat feet”.
After researching chiari I came across information about Ehlers-Danlos syndrome, hypermobility. This is definitely her. Then I came across the Driscoll Theory and was so excited that maybe her headaches could go away by taking Diamox, and maybe avoiding possible decompression surgery. The only thing is, the Diamox isn’t working!!
I’m confused about the whole ph level aspect of all this. Can someone please explain? I watched the video(s) where Dr. Driscoll talked about using the baking soda pills. Shouldn’t my daughter have gotten some relief from the Diamox? It didn’t help at all. She has a Cine MRI ordered for this upcoming Friday (to measure her cerebral spinal fluid flow), and Duke University already said they would see her once we get that. HELP!!!!!!
By the way, I believe that she has POTS as well. Not sure about the mast cell though. Oh, and she is VERY exercise intolerant. Now that her feet are better we have tried to go on bike rides or do other forms of exercise and she ends up with such a bad headache she feels like her head is going to blow up! She is very light and sound sensitive too. No meds the doctors have given her for headaches/migraines have every worked.