"...I began having severe headaches shortly after we moved from California to Texas in 1999. I had no history of headaches, so a CT scan was ordered by my general physician. It came back 'normal.' At this point, my doctor assumed, and so did we, that the headaches were allergy related because this all started after our move (the area is awful for allergies). I never vigorously pursued another answer for the headaches after that, although I mentioned it whenever I went to the doctor. I frequently took naproxen sodium whenever I had a headache, which helped me relax and drift off to sleep.
In addition to my other symptoms, I developed chronic (left) ear pain. For almost two years, I visited several doctors, including two ENTs and a TMJ physician, to find the cause. The TMJ physician said I didn't have TMJ (took x-rays, etc. to rule it out), but the ENT (who referred me to the TMJ doc) insisted I had the problem. I asked if he could order an x-ray or something to look deeper in my ear, but he felt there was no justification because I had a "classic case" of TMJ. He didn't think it was necessary to look any further until I went back to the TMJ doctor for more testing. Finally, I decided to get yet another opinion from a third ENT..."
What I didn't expound upon in this earlier blog post is what transpired with the second ENT, Dr. B, before getting a third opinion. After being told by Dr. B that there was "no justification" for an x-ray or MRI, he told me not to go to another doctor because he would only tell me what I wanted to hear. Dr. B knew I had gone to several doctors before him, and I had been diagnosed with all sorts of things, including an arthritic jaw, ear travelers syndrome, otitis media, and TMJ. It was becoming obvious I was annoying the doctor with my ongoing concerns and acting a little crazy because I had seen so many doctors. He mentioned his TMJ patients were his most difficult because they never think their problem is what he tells them. He insisted I go back to the TMJ doctor and have him take another look before anything else would be done. What was frustrating was I went to the TMJ doctor on the top of the list Dr. B gave me because his opinion was held in high regard. When the TMJ doctor said I didn't have TMJ, Dr. B insisted I return for the diagnosis. There was no other possible explanation for my symptoms.
I was discouraged and embarrassed by the ENT's remarks so I waited about seven months before I dared to make another appointment with the doctor. The headaches and ear pain persisted, so I made the return appointment with the TMJ doctor. Fortunate for me, the day I had my appointment, the doctor had a stroke. I was walking out the door to the doctor's office when the phone rang, and his receptionist told me my appointment was canceled until further notice. At this point, if I were to return to Dr. B, it would mean I had to seek another TMJ's opinion before returning. Reluctantly, I decided to get a third ENT opinion instead. He differed in thought about the TMJ diagnosis because the specialist had ruled it out. He didn't see my need to go back for a second work-up. His conclusion was we had to think worst a case scenario - that I might have a tumor causing the symptoms. He ordered the MRI that revealed a 2.5cm tumor under my brain, wrapped around my pituitary and growing into the left cavernous sinus.
The doctor called me less than 24 hours after the MRI was done and told me about the brain tumor. After our discussion, I instant messaged my husband at work with the news. He was joking with me at first because he had been teasing me that it was all in my head. How could so many doctors not know the cause of my problem? Our conversation went something like this:
Me: Just got off the phone with the doctor about my MRI
Dave: Oh, what did he say? You have a brain tumor? LOL
Me: Yes...
Dave: LOL
Me (crying while typing): I have a brain tumor.
Dave: No, seriously - what did he say?
Me: I'm not kidding...he says I have a brain tumor.
Dave: ??
At this point Dave picked up the phone and called me. His boss was very understanding and sent him home to be with me the rest of the day.
Dr. B's remark about my numerous doctor visits, "...they'll just tell you what you want to hear," was not valid. I wasn't given definitive reasons for the persistent headaches and ear pain - just theories. For example, I was told by the first ENT that "chewing gum causes headaches." He diagnosed me with an arthritic jaw and then handed me a powerful prescription (I never filled) for pain medicine (later taken off the shelf by the FDA) to cope. If it worked, we knew that was the problem. Explanations like this made me pause and think about getting different opinions. I'm sure there are hypochondriacs doctors encounter, but my common symptoms were related to an uncommon disease. I happened to be that freak rare statistic patient that no one expected. Seriously, I would've preferred a better explanation for my symptoms, but everything made sense the day I learned about the tumor. I felt vindicated because it was revealed I wasn't crazy after all.
