Sunday, April 1, 2012

Cushie Blogger Challenge - Day 1

Hunter’s Story
During Hunter's regular yearly physical in July 2009 his primary care physician referred us to the University of Iowa Endocrinology Department to see why he had not grown in nearly three years. We had an appointment scheduled for November 30, 2009. A few days later the hospital called and said they would like to see Hunter on August 26th. We met with Dr. Liuska Pesce. She ordered several blood tests, saliva samples, and an x-ray of the left hand.

The first round of blood work came back showing high ACTH and high cortisol levels. She ordered more tests and all came back with the same results.

Dr. Pesce suspected that he had Cushing's Disease. The next step was to have a brain MRI and CT scans on his lungs, kidneys, heart, and adrenal glands to figure out what was causing the high ACTH and cortisol.

Hunter had an MRI and CT's on Monday September 21st. Dr. Pesce called us Wednesday morning with the results of those tests. She told us that she had some good news and bad news. The good news was that his CT scans all came back clear. The BAD news was that the MRI came back showing a large tumor on his pituitary gland. The tumor measures almost an inch in diameter.  The pituitary gland is about the size of a pea, the tumor measured about the size of a golf ball or a walnut.  This is when mom and dad start to worry.

Our next visit at the hospital was that same afternoon with Dr. Longmuir in Neuroophthalmology. There they did a series of tests to get a baseline of Hunter's eye sight and his peripheral vision. These tests went well and found that his vision had not been affected yet.  Dr. Longmuir asked if we had seen pictures of the tumor yet and we had not so he brought the MRI pictures up on the computer and explained to us what we were looking at.  He showed us where the tumor was and explained that it is putting pressure on the optic nerve.  Hunter was lucky that he had not begun to have vision problems.

The next day we spent the whole day at the hospital. We met with his endocrinologist Dr. Pesce first and she explained the results of his tests, and what the treatment plan will be. Next we went to speak with Dr. Greenlee, the neurosurgeon. He explained the MRI scans and described how they do the surgery. Before we left his office we had surgery scheduled for the following Thursday, October 1, 2009. Things were moving fast.

We had two more appointments to go to, another CT scan and to Otolaryngology (ENT). We met Dr. Graham and once again were told how the surgery would be performed. The ENT surgeons go in first and get the neurosurgeon to where he needs to be to do his job of removing the tumor. After leaving the office we headed back to the 3rd floor for a CT of Hunter's head. 4pm and we were finally done for the day. They said the surgery will take about 5 1/2 hours.

to be continued.......

1 comment:

  1. Great start to the Cushing's Awareness Challenge, Amber! Looking forward to reading your other posts :)