Thanks for this website! It's a wealth of information that I wish I had found 2 years ago. I was diagnosed with a 1.8cm nonfunctioning pituitary tumor in July 2003. After a 6 week trial of bromocriptine and a repeat MRI, the tumor had grown to 2.0cm. My prolactin level when diagnosed was 96 and after the bromocriptine trial, it reduced to 35. I have 2 great MDs (neurosurgeon and endocrinologist) that communicate and manage my treatment plan. They agreed to surgery and in October 2003, I had the tumor removed. It had grown to 2.2cm and pathology confirmed 90% of the tumor to be nonfunctioning and 10% prolactin producing. The surgeon stated the tumor was a combination of cystic and fibrous tissue, was unusual, and he thought he had removed the entire thing. A repeat MRI in December 2003 confirmed no residual tumor activity and I felt GREAT!!! No headaches, no vision problems, no drugs, a prolactin level of 20.1, and I prayed I was cured. Six months later, I began to experience mild, infrequent headaches very similar to what I had experienced prior to surgery. The headaches are confined to the right side of my head and behind my right eye. Gradually the frequency and intensity of the headaches increased and at my annual MRI in December 2004, I knew the neurosurgeon would give me reoccurrence news. My prolactin level was tested and rising at 35.6. The neurosurgeon consulted the endocrinologist and decided to do another trial of bromocriptine due to the 10% chance it might work this time. I met with the endocrinologist last week after taking bromocriptine for 6 weeks. I told him my headaches have continued to increase in intensity and I am now experiencing vision clouding and blurriness in my right eye. He strongly feels the tumor is residual growth and is nonresponsive to medication. He redrew my prolactin and thyroid levels and stated he would be talking this week to the neurosurgeon about "more aggressive" treatment. I asked what the treatment options were and he stated there are only 2 choices of more surgery or gamma knife and that if I have radiation, I will most likely lose all pituitary function within 2-3 months. It was a very depressing visit. I am waiting now to hear from neurosurgeon with the new prolaction levels what they are planning to do. Neither option is appealing. The one positive that has come out of all this is that I lost 25 lbs after surgery and gradually noticed I was putting weight back on during this summer and fall. When I restarted the bromocriptine, I have dropped 10lbs in 6 weeks and have not changed diet or activity. |
