Thanks so much for your thoughts! We will be going to the headache clinic at Cincinnati Children’s Hospital in August and I so appreciate your help before we go. I have a number of things that I can mention to them now.
I wondered about that one spot on the MRI… Thanks for helping me feel less crazy! I will take her MRI images with us and politely request/demand that the neurologist actually look at them. So far,to my knowledge, no doctor has actually laid eyes on the MRI images – just the radiologist who I seriously doubt has a clue about the finer details of any of these things but said her brain is ‘normal’. So, I hope we have a neurologist who is willing to listen and work with us. I have hope because our experiences at Cincinnati Children’s have been very good thus far.
When I read your theory, a lot of things fell in place and certainly gave me a lot to think about. I immediately had hope that we could maybe avoid surgery. I mean, if she needs surgery and there is no other option, fine. But, if we can do something to totally avoid or at least put off surgery, that would be amazing! At this point, I would just be happy with something that could give her even temporary relief from the headache.
I agree that trying Diamox seems like a pretty benign option – certainly compared to fusion surgery! I think *hope* that we can get someone to let us try it. If they are going to try her on topimax or something, why not give Diamox a try? Honestly, I am just relieved that we are finally to a place where they are working to help her and not ignore her pain.
I will take a look at that link to the mast cell info. From what I have seen, you are so right about the testing and knowledge about mast cell testing – seems like it could be much more of a problem and much more common than tests show. I will mention zyrtec or zantac as options – again, what can it hurt?
Thanks again for your 2 cents – you are so helpful and kind. Hope you and yours are well!