Andre the Giant and Richard Kiel, AKA -"Jaws" (the villain with the big silver teeth) in 007 movies, are two people that stick out the most in my head when I recall people that have acromegaly. So I searched the Net for more information or pictures of nonfamous people who had the disease - hoping to find images of women with acromegaly. But there was not much I could find in the way of photos. Just mounds and mounds of repeat information defining acromegaly and how to treat it. Surely there's got to be someone else keeping a journal about this!
I kept asking myself, "What will I look like?"
I continued to search...
Everything I read confirmed the physical changes I was experiencing. I had symptoms relating to both prolactinoma and acromegaly. A few examples included my facial skin began to thicken, and pimples were occurring more frequently than usual (once in a while). I also continued to lactate after my youngest daughter was weaned for two years; I began to sweat a lot and had horrible headaches. The headaches were in a category of their own. I cannot describe them to you, but the pressure was unbearable (skull splitting), and it was hard to tell where they originated. The headaches were instantaneous and usually without warning; they had no pattern - although, in the beginning, they did seem to happen more at night. As time passed, they became more frequent (lasting longer) and occurred at any time of the day. Usually, when I felt a headache coming on, I was in intense pain within minutes.
I began having severe headaches shortly after we moved from California to Texas in 1999. I had no history of headaches, so my general physician ordered a CT scan. 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). After that, I never vigorously pursued another answer for the headaches, although I mentioned it whenever I went to the doctor. I frequently took naproxen sodium whenever I had a headache, which helped, and then I drifted 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 into 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 returned to the TMJ doctor for more testing. Finally, I got another opinion from a third ENT, who ordered an MRI and found the tumor. When this ENT broke the news, he said that my inner ear "looked great" but that I had a giant tumor in the middle of my head. He referred me to a neurosurgeon for further treatment.
