I just found this site a couple of days ago. Desperatley needing some support! Any words of wisdom? Is there hope out there?? Any similar stories?
I first noticed symptoms when I was about 17. The first symptoms were irregular periods, weight gain, headaches. I saw my OB/GYN on more than one occasion for these problems. They kept telling me that it was my weight so I was convinced. (The Dr. is always right, huh?)
At one point my prolactin levels were slightly elevated also. They tried parlodel but never once thought to issue an MRI. That was around 1998.
My vision slowly started to change. It first started to blur. I saw my eye doctor two times for this. He was convinced that my vitreous was detaching. (This normally happens to senior citizens, I am only 19 years old. Hmmm.)
When I started to see double, I knew something was terribly wrong so I went to see an ophthalmologist by the name of Timothy Schmitt. I had a visual fields test and within 5 minutes he told me his suspicions, a pituitary Tumor! A what? Brain tumor? I felt sick. He convinced me that these were almost always treatable. I was terrified.
I had an MRI the next day. Sure enough it was there. Approx 2.5 x 3 cm. I then saw a neurosurgeon and an endocrinologist. After extensive testing they determined that mine was non-functioning. I had surgery 3 weeks after diagnosis.
I had transphenoidal resectomy to remove the tumor. They removed all of the visual tumor and I had radiation treatments due to the size. I now take Growth hormone injections and estrogen/progesterone replacement. My thyroid and cortisol are all at normal levels. (knock on wood!) My vision returned to normal after surgery. I did lose the peripheral vision in my right eye.
If only my doctors had been educated more about my condition and knew what symptoms to look for, my vision and what pituitary function I lost might have been saved, but if you think about the what if's, you will go crazy.
I pray everyday that the tumor does not return. I am very thankful for the Doctor that diagnosed me and the surgeon and endocrinologist that are still helping me. I had a great team of doctors and I am very happy to be alive.
Anyone that wants to e-mail me and talk to me are welcome to do so. I love to hear other's stories.
