head pressure

[Guest guest]

It has been a long while since I've been here but once again I am at a point

where I need some advice. I have had TC surgery and cranial fusion in the last

year at TCI. My symptoms have not improved much but I have learned to " manage "

my pain. Recently, I have had such extreme head pressure. When I put my head on

my pillow, behind my neck, I can feel the fluids draining down my throat. I

haven't returned to TCI because of the expense and have only done follow up

appointments with my GP, who knows absolutely nothing about chiari. When I told

him about this pressure and the feeling of fluids draining, he laughed at me and

said that if this was CFS fluids building up, you would be dead. I explained

that people with chiari do have CFS flow issues and he just looks even more

confused. Poor guy, he is a great dr, just doesn't understand this disease as

many don't.

Does anyone else experience this? My hubby rubs the back of my head and I can

feel the draining down my throat. And believe it or not, my head feels better

too. But after talking to my doctor, I'm feeling like a loony!! LOL. But I

definitely get relief from these massages.

Any input on this is appreciated. My Dr is really great when I inform him of

factual information. So I really want to understand this and be informed on my

next visit. Thanks so much~ cindy