I am 63 years old. Up until I turned 60, I had had a very fulfilling personal life as well as an extensive professional life. Things changed once I turned 60.
One year ago almost to the day in May, I received a phone call from Dr. Alex Fraser informing me of the results of an MRI test. There are three words that stand out from the first part of the conversation - tumor, pituitary and brain. For those who have heard these same words, you can appreciate the numbness that took over my mind and the terror that took over my body. What I didn’t realize until much later in my journey was that this phone call was the first step towards my recovery and a happier and far more productive life.
The thing is that my illness had really begun two years before this diagnosis. A few months after my 60th birthday, my health began to deteriorate. The first people to notice the changes in me were my family, but eventually concern arose with our close friends and my colleagues at work. I had always worked in a high-paced environment and still had the energy to be active outside of work, but that changed. By the end of the day, all I could think about was falling asleep on the couch when I got home.
"I am just an ordinary person who was lucky enough to come to London and meet this incredible team."
I had lost my energy as well as my appetite. Steadily, I continued to lose weight and almost all of my body’s muscle mass. Considering that I had been very dedicated to a gym for over 20 years, it was quite frightening to see the enormous physical changes to my body. I also noticed that my balance was a little off. My body’s sensitivity to the cold had increased significantly, exhausting my body even more.
But the most dramatic change was in my emotional state. My husband and my family would tell me often that I really wasn’t present in most conversations or in what was happening in our family’s life situations.
During these two years, my family was very concerned about me. I knew that I was not myself, but I thought I had done everything I could. I had been going to my family doctor and had several blood tests, CT scans and ultra sounds, all producing nil reports.
In January of 2012, my health took another negative turn. I saw my optometrist because I thought I needed a stronger prescription for my reading glasses. I came out of that appointment learning that I had a macular hole in my right eye which would require surgery.
I also stopped driving on that day because both of my eyes had shown a dramatic decrease in vision. The surgery on my right eye took place on March 2. As I was healing from the surgery, the vision in my left was becoming milky, growing from the outside and moving inward. By April of last year, my optometrist told me that I very close to being legally blind.
"My vision came back immediately after the surgery. This was a gift I had not expected."
A referral was made to neuro-ophthalmologist, Dr. Fraser. After a lengthy examination, Dr. Fraser immediately coordinated several tests for the following week, including visual field tests, OCT scans, CT scans and an MRI. It was the MRI that gave the team the diagnosis.
Dr. Fraser reassured me that most pituitary tumors are benign and, most importantly, he was part a team of doctors who work together to help patients who have this condition. As scary as this process was, I finally had a diagnosis that explained the symptoms I had and I was going to have a team of specialists who were going to work together to give me back my life.
In the next two weeks, my husband I met with endocrinologist Dr. Van Uum, neurosurgeon Dr. Duggal, and ear, nose and throat surgeon Dr. Rotenberg, as well as their senior residents. Each of the doctors reviewed the MRI picture with my husband and me, being extremely sensitive to our nervousness and providing a detailed explanation of their role. There was some concern because my tumor was very large. I was so thankful that, because my vision was so poor, I really could not see the tumor on the screen.
When we met with Dr. VanUum during this rotation of visits, he had already developed the start to my treatment plan based on some earlier blood results. He told me that he would call me at home if the new blood work indicated adjustments to the medications.
One more remarkable note, Dr. Duggal and Dr. Rotenberg arranged the surgery to take place three weeks after our visit. You can imagine that we were quite taken back. When I asked Dr. Duggal why my surgery was taking place so quickly, he explained that if they waited any longer that I would likely be permanently blind very soon.
The condensed time frame between doctor’s visits and surgery accomplished two significant outcomes for us. My husband and I felt exceptionally well prepared for the surgery. Each doctor took the time to explain his role in my treatment and recovery. And two, the condensed time frame for all of the consultations minimized the anxiety and worry for the pending surgery, not only for me but for my family.
"The depth of coordination of this team is outstanding."
Dr. Duggal and Dr. Rotenberg performed my surgery on June 27, 2012 and the results were better than I and the surgeons expected. The very large tumor was benign. Because of Dr. Duggal’s and Dr. Rotenberg’s exceptional surgical skills, most, if not all, of the tumor was removed. And remarkably, my vision came back immediately after the surgery. This was a gift I had not expected!
After surgery, my recovery in the hospital went very well. Although the neuro floor in a hospital can be a sad place to be, the seventh floor nurses [at London Health Sciences Centre’s University Hospital] were extremely positive and comforting. I didn’t really feel any pain- only a little discomfort. Each of the specialists visited me in the hospital as did the senior residents.
The depth of coordination of this team is outstanding. The exceptional care continued. All of these specialists arranged follow-up appointments throughout the year to monitor my progress.
I have to tell you that I am no one special. I am not the grandmother or aunt or have any special connection to these specialists. I am just an ordinary person who was lucky enough to come to London and meet this incredible team.
So you see that phone call from Dr. Alex Fraser at the end of May last year really was the first step to my recovery – a recovery that continues.
My thanks to Dr. Van Uum, Dr. Duggal, Dr. Rotenberg, Dr. Fraser, Dr. Nicolle, Dr. Lee, and Dr. Cooper. They are true pioneers to create this exceptional model of collaborative team work to take care of patients with pituitary disease. This team helped me face the most challenging situation in my life. Because of the confidence that I had in all of them, I was able to help my family believe that my surgery would be successful. Having this level of confidence is critical to every patient’s recovery. I truly believe that I was privileged to be under the care of this team.
Jo-Anne Grozelle, Windsor, Ontario.