June 9, 2003 after attending a Pi Phi pledge class reunion, my pledge sister who is now a pediatrician, called me and said that I looked different to her. She had not seen me in almost seven years.
I started to cry: I knew something was wrong. She said, "Your face, hands and feet look different, and your voice has changed it's deeper".
I told her that my doctor had prescribed diuretics on and off for the past three years for the swelling of my hands and feet. I told her about my shoe size, which had gone from a 8-1/2 to an 11, and my ring size increasing. We talked about my headaches, dizzy spells, sweating, drips of milk coming out of one breast, and major fatigue, which I had been having for years.
She said "I think you have acromegaly." It is usually caused by a pituitary tumor that secretes too much growth hormone. She advised me to get an MRI immediately. I called my family doctor and I did have an MRI that same day. My friend was correct - I had a pituitary macroadenoma.
Although she lives out of state, my friend directed me to one of the best hospitals in the world for neurosurgery Barnes-Jewish Hospital.
The Washington University neurosurgeon I saw listened to me and explained what was happening. I was in a state of shock but heard every word as he gave me his recommendations which included transsphenoidal surgery, and then possibly Gamma Knife and a medication called Sandostatin® LAR® (octreotide/IM injection).
I was so relieved to be diagnosed at last and to know what was wrong with my body. I had been searching for answers for years. So I was ready to aggressively treat this tumor which had been destroying my life.
I was scheduled for transsphenoidal surgery at Barnes-Jewish Hospital on June 26th, 2003. My surgery went very well, but the follow up MRI showed some residual tumor. My neurosurgeon suggested that I try medication and have Gamma Knife radiosurgery to get the last of the tumor.
I was apprehensive. I was scheduled for Gamma Knife but then postponed it for a couple of months, rescheduled and almost postponed it again. I had started the medication Sandostatin, which lowered my growth hormone levels. I knew I could stay on medication my entire life, but I was only 30 years old. I wanted to continue to treat this tumor aggressively.
My endocrinologist warned me that if I had Gamma Knife radiosurgery, I might not be able to have any more children because of the cumulative radiation side-effects on the pituitary. This was a big concern for me - actually my main fear - because I definitely wanted more children. He said the best chance for me to conceive would be soon after the procedure.
I had already beaten the odds thanks to my wonderful surgeons - getting me through surgery and still having a pituitary that is fully functioning. So I put my faith in them again and decided to have the Gamma Knife radiosurgery. Again, I was lucky, because it has been a year after having the Gamma Knife radiosurgery, and I am now expecting another (my third) child.
So I called the Gamma Knife Center once again and put myself back on the schedule. Yes I was still very anxious. I did not like the idea of being awake during this procedure but I will tell anyone it is not at all as bad as it looks.
On the day of my treatment my doctors and nurses gave me lots of reassurance and a little bit of medication to reduce my anxiety. The frame placement was not as painful as I expected and once the frame is on I felt no pain at all. It was like wearing a hat you cannot take off.
I still have a picture that the staff took of me. I was smiling and happy and I have this frame on my head. It looks so painful, even to look at the picture today but I was truly in no pain at that time at all.
The staff stayed with me all the time - during the entire MRI and the Gamma Knife procedure. I could talk to the doctors and nurses at any time. Just knowing someone was always there made me comfortable and time went fast.
When the procedure was complete, the doctors removed the head frame. I think I was really light headed from the release of the pressure. Minutes later I was with my husband, both amazed that the procedure was over. After just a short time I was then released and I went out to eat lunch in the hospital.
My friends and family laughed because although the head frame was off it took me an hour or so to realize I could move my head around. I guess I got attached to that head frame quickly. I was in no pain at all and felt great!
I cannot say enough about the nurses and doctors at the Gamma Knife. This procedure is a key part of treating the tumor that could have taken my life if it was not found and aggressively treated.
My next MRI is in June 2005 after I deliver our little girl who is due to arrive May 31st. I am looking forward to the day I see my MRI results and there is no tumor in sight. And I am so thankful for the past two years and my quality of life that has been given back to me. My mind, body and spirit have been healed. I am truly blessed to have such a wonderful team of medical professionals. Thank You!
P.S. July 05
I did deliver a healthy baby girl on May 23rd. I and our little angel Amy Marie are doing great!