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Anyone else have CONSTANT headache or possibly a bone tumor in the skull, but perhaps told it wasn't causing the symptoms? Please post here if so. ( search tags: fibrous dysplasia, undiagnosed CT MRI, pressure in head

by Rob2008, Oct 10, 2008 02:25AM
Hello everyone,  my name is Rob and I am from Alabama.   About 4 years ago I began having an intense pressure headache all the time, in the front area of my head.   It is CONSTANT.    For two months I didnn't know what was wrong, everyone was telling me my scans were normal, etc.    I was even evaluated extensively by a headache specialist at a university hospital (UAB).   I was told nothing was wrong with me, and I should see a phychiatrist, there must be something going on in my life causing this "health anxiety".        Frustrated, I saw an ENT doctor at the same clinic,  he asked me if I'd been having dizziness and I said yes, but the worst problem by far is the PRESSURE in my head 24/7.    He said that he would be thinking more about "that bone tumor" than anything.   Bone tumor?   Yes, there is a 3.5 centimeter bone tumor in the frontal bone of my forehead.    He said it is clearly apparent on the scan.   Why was I not told about this?    I think it is because it's benign, and my brain isn't seriously compressed, therefore no one is liable  RE: my life.      I asked the ENT what he would do if he were me, he said I wouldn't have surgery unless I just couldn't go on anymore, but only then would I have surgery.   Finally months later, I told him I can't go on anymore....So he sent me to the  neurosurgery rotation clinic where you see someone new each time.   I was seen there for 2 years and for 3 follow up, and each time I was told that most likely it was causing my severe pressure never ending headache.     However, they wouldn't offer me an operation unless it was clearly growing or a cosmetic concern.     I accepted this for 2 years, but got tired of the symptoms and decided I can't live with a headache forever.    I return to the clinic and all but demanded surgery and you guessed it they REVERSED their opinion...told me the tumor is not causing my symptoms, and that I seemed obsessed.    

That is my story.   Is there anyone else with a bone tumor in their head here???   Do you have a headache?   I have found ample evidence to suggest bone tumors do cause headaches.
Member Comments (3)

by Rob2008, Oct 10, 2008 02:25AM
Also, if a doctor reads this, please feel free to respond.

by Rob2008, Oct 14, 2008 11:28PM
reach me at rob35235  /at/ live ******* if somebody reads this one day

by Rob2008, Oct 14, 2008 11:29PM
rob35235 at live  d/o/t c/o/m  reach me there if i'm not here
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