When I tell someone that I've had a brain tumor removed they automatically think I've had a craniotomy. I know this because their eyes usually begin to skim the top of my head as if they're wondering where the entry point was when the tumor was removed. I mention the tumor was taken out my nose and they're surprised that can even be done. Somehow, it never seems like I've said enough about my experience, but any detailed discussion about it would be lengthy and probably more information than they want to know...so I hold back. I usually clarify the tumor was benign and removed from my pituitary, but that's it. When I told my brother about my tumor and how it would be removed he asked, "Oh, so...is it kinda like that scene in the movie Total Recall when Arnold Schwarzenegger pulls something out of his nose?" Well...almost, but not quite.I received the news about my pituitary tumor in the spring of 2005. The phone conversation with my doctor was brief. I listened intently as he explained my MRI results and when I heard the words "referral to a neurosugeon" I realized I was in a serious situation. It was as if I had received a death sentence even though the doctor assured me I would be fine. Shortly after this I met with a local neurosurgeon who attempted to educate me in 20 minutes on the structure of my brain and what a tumor on my pituitary meant. The appointment eased my fears, but I still had so many questions. Unfortunately, many of these questions would have to wait until it was revealed what kind of tumor I had and whether or not my pituitary was functioning properly.
For days after my visit, I scoured the Net and searched for every piece of information I could get my hands on. At the time, personal stories were scarce but I read about the brain anatomy, pituitary function, different kinds of tumors, lab work, surgeries, hormone replacement, what to look for in an experienced surgeon, and the list goes on. Even with all the information I was getting, it seemed so complicated...I had information overload. It was difficult to sift through and absorb everything I was reading, especially since I knew little about the pituitary function to begin with. I realize that this is the case with many people. I've tried to explain my situation to those that ask about the tumor. Most of the them are not aware of the entire brain anatomy and that there are different kinds of pituitary tumors that affect it. I think it's in the "need to know when it happens to me or someone I love" categories of life, or at least it was for me before my diagnosis.
The pituitary is the master endocrine gland and it affects (either directly or indirectly) all the major organs in your body. Having a tumor wrapped around it is a big deal. There are many support groups being formed online to help people who are struggling. One group in particular that is gaining attention is http://www.acromegalycommunity.com/. If you have recently been diagnosed with acromegaly I would encourage you to sign up. There are many people sharing their stories on the message boards, and they may be able to help you with any struggles you may have in understanding complications that come about with having a tumor on your pituitary.
