Hi. I’m new here. My dd was dx with Chiari last Sept. She was 11 then, now she is 12.The neurosurgeon told me she could be asymptomatic so I didn’t think much.of it. Doing research I saw that there were problems that could occur with Chiari 1 and she could even need surgery. Then a month ago my dd started getting Chiari type headaches at the back of the head. Because the ns, lead me to believe that there wasn’t a need to be alarmed by.my dd CM dx, I am thinking he is not the ns for me. I ordered tha book that comes highly recommended and is titled Conquer Chiari. It is overwhelming but I am beginning to read that book. I went for my dd yearly checkup with her pediatrician that I respected. I mentioned the Chiari and that she is starting to get headaches. He said perhaps meaning well, “please don’t give your daughter more of a reason to have headaches than she needs to.” What? I thought later after leaving the office. Who does he think he is!!! He also commented that the size of the Chiari is small. I responded that the size of the Chiari is not a determinant in the severity of symptoms. He backed down to that. I am really angry at that Dr. I had previously had a lot of respect for him but right now all that is gone
I did some research on Dr’s in my area and the surrounding area. There is one that comes highly recommended but when I reasearched him on the web I have learned he is being sued for malpractice. He saw patients in FL for consultations, where he is not licensed. His name appears on the Dr list here as well. It is scary How am I going to find a reputable ns for my daughter. Does anyone have any recommendations for the Hudson Valley area. Thank you.