Stephen G.

Stephen G.

Stephen’s Story

I always had headaches. It had been a part of my life since I was in my mid teens. My mother was a migraine sufferer so I just believed that it was my turn to enter into this unfortunate family tradition. At first, the headaches were manageable—just small annoying pains around my eyes. But, as time went on, they became progressively worse and worse. After graduating from high school and dealing with headaches every day, I decided it was time to move out of my family home and move to Halifax and begin my own adult life. I was scared, but at the same time, more excited than I had ever been. The headaches persisted. In the first six months of living in Halifax, things really began to take a downward spiral. The pain intensified to the point of not being able to work or go to school. These attacks would wake me from sleep and keep me up all night with a pain that I can only describe as someone attempting to tear my eyes out of my own head with an ice pick. I put up with this though, for nearly two years. The daily regimen of waiting for pain and subsequently dealing with pain was absolutely miserable. Everyday was the worst day I could imagine. I was 21 at this point, it was 2010. The pain only had gotten worse. I tried to live my life as normally as possible, but it was nearly impossible. On top of the headaches, I now had sore joints and my facial features looked more swollen than normal. I didn’t notice these changes because I had grown with the advancement of the symptoms, but friends and family who didn’t see me often commented on it regularly. I had always assumed it was just part of my natural growth into adulthood.

I had missed a test in school and went to a local walk-in clinic to get a sick note. As I began to leave, the doctor on duty stopped me and mentioned that I shared some facial features as a good friend of his who suffered from acromegaly. I of course brushed it off. How could he have any idea about me? He doesn’t know who I am. I decided that maybe I should look into this, and see if maybe, by some chance, this is exactly what I had been searching for. The symptoms were dead on. Every single one of them in one form or another was something I was going through. I never went into a hospital with this new knowledge; I just assumed my pleas would be ignored. By the time Easter approached, the pain was at its peak. I went to my parent’s home to spend time with my family, and inevitably, I had one of my attacks. This time I was not alone, as my mother was in the room as it happened. Unlike me, she is not a procrastinator and forced me into the hospital that same day. I was taken directly into the observation room and they began testing me. Not for acromegaly, as I had hoped because they had never heard of it, but for diabetes, and brain tumours, and cluster headaches. I was becoming more and more irate at the entire process. It was disorganized and impersonal. As my blood was being taken, I finally spoke up and asked the nurse if she could test me for acromegaly. As soon as they ran the blood tests, they realized that maybe acromegaly was something they were dealing with. The next two weeks were a blur of tests. Blood being taken, X-rays, MRIs, EKGs, it felt like I was becoming some sort of test subject. By the time the tests were done, it was late April. I went to meet with the doctor and he told me that they were fairly certain it was acromegaly, but they would have to send me to a pituitary unit in Halifax.

I was skeptical that they would be helpful in Halifax; after all, the previous clinic I visited had been impersonal and difficult the entire time I was there. I was welcomed warmly by the receptionist and she walked me to a waiting room and told me a group would be with me shortly. In less than 10 minutes, a group of nurses, med students and doctors entered the room. They all shook my hand, and greeted me warmly telling me it was a pleasure to meet me. In 10 minutes this pituitary unit made me feel more comfortable than the previous clinic I visited did during the two weeks I spent with them. They confirmed that I did in fact have acromegaly and that I no longer needed to worry because they would begin the process of getting me surgery. I was so relieved. As I went to leave the room, one of the nurses pulled me aside and promised me that they would take care of me. Leading up to the surgery, which was to take place in June 2010, I spent a lot of time in the Halifax hospitals. They redid MRIs and other tests and were always polite and understanding. I spent a few long afternoons in the pituitary department having blood taken and talking about life after surgery. The nurse who had earlier pulled me aside to reassure me that I would be taken care of handled all of my test scheduling; she kept the wheels moving while keeping me calm and informed at the same time. I couldn’t believe how incredible the entire pituitary team was. They were like an extended family, always checking up on me and asking me about the whole adventure and how I was doing well. I owe everything I know about my condition and the way I dealt with it to this group. I was so lucky.

The day had arrived; it was June 2010. I hadn’t slept the night before. Not because I was scared, or worried, but because I was so excited to finally be done with the headaches. If the surgery only solved that one thing, it would have been worth it. I was brought into a waiting room with my family and girlfriend at the time. We were joking and laughing, not giving sadness a chance to ruin this moment. I couldn’t have done it without these people. A nurse approached and told me that they were ready for me. I took a deep breath, hugged my family, and told them I would be okay. The next five hours were a blur, as they were dedicated to surgery. I woke up sometime later and felt incredible; no doubt this was due to the anesthetic. I was happy and couldn’t stop smiling because I knew it was over. I spent five days in the hospital, everyday feeling 10 times better than the day before. The worst part of the entire hospital and surgery ordeal was having to be there for five days. I didn’t have a single headache the entire five days I spent at the hospital. The day I left the hospital it was so sunny and warm, I knew that it was the beginning of a new stage in my life.

Since the surgery, things have been immeasurably better. I haven’t had a headache since the surgery, and the swelling and other symptoms are all gone. The surgery went perfectly, but sadly, they could not remove the entire tumour. I would have to begin taking a somatostatin analogue to suppress what little adult growth hormone was remaining. I take this in the form of a monthly injection in the upper buttock once a month. Part of the pituitary gland had been damaged during the surgery and I also had to begin taking a supplement to replace thyroid stimulating hormone, hydrocortisone (controls stress levels), and testosterone. Dealing with all the different medicines that I take daily, biweekly and monthly has been difficult but totally worth it when compared to life pre-surgery. The team at my local pituitary ward has continued to contact me, and they continue to be my team who runs any tests or appointments for me.

It still isn’t easy, and everyday holds its own little annoyances and hindrances, but these things hold a microcosmical amount of importance to me. I have been through the storm and faced many hardships, but I came out the other side stronger than the way I had entered. To anyone who ends up reading my story, I have one thing to say—never, ever, let your illness control you. You are the one who controls it, never forget that. To anyone with acromegaly, I know it’s terrifying and I know how hard it is to come to terms with it, but you will be okay. And if you ever need to talk to someone who has gone through what you are going through, please contact me. It’s never a bad time. Stay strong.

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Check out the true-2-me guest editorial on treatment Considerations for Acromegaly

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