Originally Posted by debm2

Everybody I talked to before Emily's surgery told me that her headaches could not be because of the chiari because she told us they were in the front, not the back. However, her neurosurgeon told us that the body is a wonderful thing and different people experience different things. Her headaches are now gone. Chiari is not well known, so it is possible your doc doesn't understand it. I would ask for a neurosurgeon to look at your MRI if possible.

I just met my newest neighbor and guess what? She had the decompression surgery just last year! She has had a good recovery to the surgery, however she still gets headaches and is having a more difficult time coming off the narcotics for pain they had her on. It reminded me that Emily had a bad reaction to morphine after her surgery and had horrible headaches until we asked that she be taken off it. Once they swithched her from morphine to Tylenol with codeine she did much better.

Ah- I just read again that you go to see the neuro in December. Start now writing down all your questions and take the list in with you. Trust me, you will not remember everything to ask without it! You can ask for a copy of your MRI, if you don't already have it, and take it with you. Ask him to explain whatever you don't understand.

One thing that bothered me most about the whole thing with my daughter is that whenever I told people about it, they dismissed her condition as not being that serious. They did not get that this was brain surgery we are talking about here! We are messing with the brain and the spine. But because it was not a tumor, well, it was not that bad. I started showing people the picture of her open brain to show people that this was more than a simple procedure.

You have already been through so much. You do not need more trauma. I do hope so much that you get a good neuro that will answer your questions and be compassionate.