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Erin's Story...

17 Sep 1999
by Troya Renee Yoder, used with permission
as originally posted on Suite 101.com, Pituitary Disorders

Diagnosis

I never expected to walk into my doctor’s office and hear him tell me that I needed a MRI because I may have a brain tumor. I could not understand how amenorrhea, galactorrhea, and headaches could equal a brain tumor. He began to explain the correlation, and it started to make sense. What did not make sense was why it was happening. To this day, that question remains unanswered.

Apparently, the HMO I had was also unsure about the correlation between my symptoms and the presumed diagnosis, as they repeatedly denied requests for a MRI. After two months of doing battle with them, the HMO finally agreed.

Surgery

It has been eight years since I had surgery to remove a macroadenoma from my pituitary gland, so my recollection of what transpired is a little fuzzy. What I do recall, for starters, is being quite scared. Let’s face it, MRIs, particularly of the head, are a less than pleasurable experience. I did manage to get through that MRI with much reluctance.

As with anyone with a pituitary tumor, I was off to meet an endocrinologist. I’d heard of endocrinologists, but never knew what types of patients they treated. Now I knew. I was prescribed Parlodel to control my prolactin level. Unfortunately, the medication caused such severe depression that I could not continue to take it. Surgery was recommended.

I met with a neurosurgeon to discuss the procedure. He explained the transsphenoidal macroadenomal scraping procedure to me: cut above the gum line, go up behind the nose, and drill into the skull and scrape off the tumor. He also explained that a piece of my hip would have to be removed to "plug up" the hole that was being made. I was amazed by the procedure, but my stomach was churning!

The surgery was scheduled for December 1991 and went quite well. The most horrifying part was waking up and having my nose completely packed with cotton. I was sure I was going to die from lack of oxygen. It didn’t take long before I felt like I couldn’t draw one more breath from my dry mouth. My stay in the hospital only lasted a few days.

The most painful part of my recovery was the discomfort in my hip. However, within three weeks, I was feeling like myself again. I returned to work a few weeks later, feeling just fine. Had a follow-up MRI after my surgery and all was well. I also made frequent trips to my endocrinologist’s office to have my prolactin levels checked.

Eight Years Later…

Eight years later, I still have my prolactin levels checked yearly.

This past summer, at 15 weeks into my pregnancy, my membranes ruptured. No one can explain why this happened. A high-risk o.b. specialist treating me suggested that there could be a link between elevated prolactin and losing the baby. As it turned out, my prolactin was slightly elevated. I had another MRI (and my, how far MRI's have come in the past 8 years – this one was much easier than all those previous Migraine Rustler Instillers).

My MRI results just came back – they proved unremarkable – no tumor! It is hard to imagine that this is something that I will have to be concerned with for the rest of my life. I will admit that I was rather naïve as to the ramifications when I was first diagnosed with a macroadenoma back in September of 1991. Frankly, until this summer, I have remained in the dark as to the consequences. Thanks to the Internet, I have become more informed about pituitary tumors.