Pituitary Adenoma

I recently posted pictures of my MRI when discussing my doctor appointment and was asked if I could write a detailed post about my pituitary adenoma.

My pituitary adenoma

In 1991, I was diagnosed with a pituitary adenoma. I was in 1st grade at the time. I was told they would have to monitor it with MRIs and doctor visits every 6 month, year, then every two years. Or at least that's what I remember.  Pituitary adenomas often go undiagnosed but once they are diagnosed, they need to be monitored.  Right around the time, I was diagnosed, they had done a study and something like 15% of people have one. Now if you look at wikipedia they say 16.7% so I think my 1st grade memory is pretty good.  My primary care physician at the time presented to doctors using my films.

A pituitary adenoma is a tumor on your pituitary gland that is typically benign and slow growing.  After my first MRI, I was told that mine was 2-3mm in diameter.   After each MRI, I would have an appointment with a neurosurgeon so he could look at my films and talk to me/my mom and give us an update.  The updates always were "no change" but that I still had to keep coming back.  All the specialists always ran 2 or more hours late. Also if I did not have the first MRI appointment of the day, I would have to wait hours for that too.  Over the years, MRI duration has significantly decreased.  Around puberty, they made me go back to yearly MRIs/appointments instead of every two years. And since then they have said yearly but I have gone less frequently because I'm a slacker. Most recently I was told mine was 6-7mm and was told "no change" but if you think about it 2-3mm and 6-7mm are not the same thing.

General facts about pituitary tumors (source)

• Pituitary adenomas are relatively common, occurring in 1 out every 1000 adults.
• Most pituitary tumors are benign and are called adenomas.
  • Pituitary adenomas are typically slow growing
  • Some pituitary adenomas, although still benign, can invade adjacent structures (such the cavernous sinus, an area where the carotid arteries run)
  • Pituitary carcinomas, a malignant tumor, are rare.
• Pituitary adenomas have separate names based on their size
  • A microadenoma is less than 1 cm in diameter
  • A macroadenoma is larger than 1 cm in size

My doctor appointments are relatively short in duration especially compared to the hour travel to the hospital and the couple hour wait in the waiting room.  They give me quick eye tests because the first concern they have is that if the adenoma grows it will hit my optic nerve and affect my peripheral vision.  I was told it would slowly impact my peripheral vision that I may not even realize that my field of view gets smaller.

In 2008, I saw a new specialist because I was too old to be seen by my previous one (He worked at Children's Hospital).  This neurosurgeon told me that he thought I would need surgery and that I had to go to a better specialist. I went to the better specialist and he wasn't concerned with the size and location.  He was concerned with how it is connected to my pituitary gland so he wanted me to have blood work. He called downstairs to an endocrinologist and had me seen immediately. Mind you I got blood work yearly but hadn't been going to an endocrinologist.  I went downstairs and the waiting room was packed. People were waiting there for hours to see the doctors. I got called back within 5 minutes. The other people waiting were very upset by this.  One lady was even in a gown in an exam room waiting when someone came in to tell her to get dressed and to come back in three hours.

After getting blood work, getting more blood work, having to take a steroid at 11pm, and get blood work at 8am, and getting more blood work everything came out normal so the endocrinologist said that she didn't think I needed surgery yet. All the blood work and visits took the entire summer.  I got so much tested that each time I'd get blood work the person performing the tests would comment on how much they were testing. Their arms would start to shake by the time they were filling the last tube with blood.  I knew they'd be testing a lot when all of the tests couldn't fit on one page and they had to print another sheet.  I think my standard is 9 tubes. Once I only had 6 and the person still commented about how much they are testing. I'm not sure what is "normal" but I think Dave and my mom only get 2 or 3 each time.

My memories of my first MRI

For my first MRI, they drugged me to put me to sleep because they weren't sure how a 1st grader would handle an MRI. I remember them sticking me with the IV for my contrast prior to the MRI and a nurse from across the hall coming over in shock that I had not screamed when getting the IV. I was a good patient.  Then I went into some room and was given the medicine. Then it was off to the MRI room. Once I was on the table, they taped my head down and jammed pillows beside my head so I wouldn't move.  My mom got to sit in the room so that when they put the little helmet thing on, I could see her through the mirror and wouldn't get scared (or something like that).  Somewhere between 1/2 and 3/4 of the way through the MRI is when they came in to inject me with dye.  I only learned later that I get a with and without contrast MRI so that's why they do the dye near the middle.  So then the MRI is over and I was good. I don't remember MRI exactly but do remember the loud noises from the machine but I was warned about them so no big deal. Now after the MRI, I was a little loopy from being drugged. I remember not being able to walk straight and my mom having to help me to get to the car. I remember pointing to the huge skylight in the lobby and being purely amazed.  My mom told me that I was acting drunk. I thought that was funny. 

For each MRI after that, they didn't drug me and thought I would be fine. They were right.  I like to nap during the MRIs.

My memory of the "worst" MRI I had
I was still in elementary school at this point. My dad had taken me to this appointment.  He waited in the waiting room since I didn't need to be able to see him the entire time to remain calm.  They woke me up from my nap to give me my contrast. It really hurt. Then all of a sudden 5 doctors/nurses were around me telling me to stay calm that nothing was wrong (red flag right there).  The IV was in my right arm so they had me look to my left and talk to those doctors. They tried to distract me by telling me I had the same name as the one doctor. They wanted me to talk to her.  I wanted to know why my arm hurt so bad. They had to redo the IV and redo inserting the dye.   Once they did all that, we were all good and I was able to go back in the MRI.  But my arm hurt and was yellow.  I came out of the MRI and met my dad. He wondered why I took so long. They didn't come out to tell him anything. My arm was still slightly discolored from their mistake.  I guess the IV wasn't in my arm right but they thought it would be OK and cause no problems so they didn't tell my dad, but even back then I thought that was odd.   I can picture the room and the doctor with curly brown hair that was named Colleen. I can't remember which year it was though.

My first neurosurgeon appointment
This was the first time I had angel food cake. I got it from a vending machine. Blue icing was also involved.  Both of my parents went with me. The appointment was more in an office than an exam room. I remember windows on two walls so he must have been a big shot to have a corner office.

Testing in 1st grade
In 1st grade, I had to go through a bunch of testing. They wanted to figure out what was wrong with me. That is how they ended up doing an MRI and finding the pituitary adenoma. I had a lot of tests. I don't remember specifics for a lot of it.  I do remember having to go to the hospital 3 times (once a week) for all day blood tests. They would take blood every 30 minutes or an hour. I'm not sure what this did. I also had an ultrasound at one point.  I had some sort of test that said I had the bones (or bone development or bone structure) of a 9 year old even though I was only 7. I don't remember any details on this so don't know what test that was or what that really meant.  I think all the tests started because my left breast had developed. It was an odd thing.  Luckily all that corrected itself.