Personal Stories

Oz will forever hold a special place in our hearts: Known affectionately by family and friends as "Ozzie", his soft spoken and gentle spirit was a true gift to all who knew him. Taking time to listen, share, learn and teach we have all been blessed by his presence and will forever remember him and how he helped us live life to the fullest.

Oz's Story

In the summer of 1999, my wife, daughter and I built a new home. During the construction, I began to develop severe carpal tunnel syndrome, even more so than I usually suffered from. It became so severe that I was only getting approximately two and a half hours of sleep per night and I was beginning to show signs of complete exhaustion.

I decided that it was time to visit my GP, which I was never very fond of doing.

So off I went to my GP. He indicated that, yes, I indeed have carpal tunnel syndrome and the only way to remedy it was to have a carpal tunnel release. That was something I had envisioned and was in favour of doing the procedure.

Off to another doctor for a nerve conduction study that confirmed what we already knew. My GP then sent me to a neurosurgeon who was one of the two types of doctors who do carpal tunnel releases (the other being a plastic surgeon). Upon meeting with the neurosurgeon, he immediately suspected that I had something called acromegaly and he ordered an MRI and blood work. We went down to the MRI clinic at the hospital, and the neurosurgeon asked me to come back to his office when I was finished. When I got back upstairs, he accessed my MRI on his computer screen and there it was—a tumour on my pituitary gland that measured 65 mm by 50 mm. This thing was so large that it had surrounded both carotid arteries and was putting pressure on the optic nerve.

The next appointment was to see the endocrinologist who immediately put me on a variety of medications in order to control the growth hormone levels, which were extremely high.

I was also scheduled to see the neurosurgeon again to have the carpal tunnel release done. This was very successful and relieved the pain immediately.

One of the medications that I was put on was a somatostatin analogue, which hopefully would lower the IGF-1 levels and cause the tumour to shrink so that I could have transsphenoidal surgery to remove all or at least most of the tumour. The drug did not perform as expected and, in fact, did nothing at all. The only thing this drug accomplished was to wipe out my bank account over an 18-month period to the point where we were about to lose our newly constructed home.

Enough was enough, and I approached the neurosurgeon to have the operation. The operation was successful and approximately 80% of the tumour was removed. As a result of a post-op MRI three months later, it was discovered that the tumour had re-grown and was approaching the dimensions it was prior to the operation and was still producing excessive amounts of growth hormone. At this time, the surgeon told my wife and me that he would have to re-operate and would have to perform a craniotomy. A craniotomy is a surgical technique where a piece of bone from the skull is temporarily removed to access the brain.

In August 2001, I had this surgery and then had radiation every day at 8 AM, except weekends, up until November 2001. The operation was a success, and due to the surgery and the radiation, the tumour shrank very rapidly. However, I did have to continue using a somatostatin analogue, and because of its very high cost, the drug company initiated a program to help with the uninsured portion of the cost. Still, after many months of this drug, my IGF-1 levels did not come down. As a result, I was prescribed another drug, a GH receptor antagonist, and it has controlled my IGF-1 levels to the point where they are in the normal levels category. My endocrinologist must be pleased due to the fact that I only have to see him once a year now to review my blood work.

When I look at the symptoms that I had, I can recognize that I had quite a few such as enlarged hands (which caused my carpal tunnel syndrome), enlarging of my feet, night sweats and a thick brow.

A little sidebar to tell you about: when a patient would have their blood work done, sometimes four to six weeks prior to an endocrinology appointment, and then appeared for the appointment, the blood test results would not be available. That would be the most frustrating experience because it was not only wasting my time, but also the clinic's time. The blood tests were being sent to Toronto to be done. A letter writing campaign began to convince the Health Authority to secure the proper equipment and train the staff. After only two letters, this change was made.

On another occasion, while attending the endocrinology clinic, I couldn't help but overhear a young lady explaining to another lady in the waiting room the reason for her visit that day. When leaving the clinic, this same young lady was on the same elevator as me. I indicated to her that I had overheard her conversation earlier and offered her my business card and told her that if she needed someone to speak to that she could call me at any time. Other patients must have felt the same as I did and through the efforts of patients and the clinic nurses, a support group was established that meets twice a year. Guest speakers such as neurosurgeons, dieticians, and endocrinologists talk to the group, alongside general discussions among the group. These meetings usually last from two to three hours and are a great way to exchange information relating to acromegaly and the well-being of all patients and their families.

During all this time, I managed to continue working, although in another capacity, with the same employer and actually retired in August 2010.

It has now been 10 years since my last operation and I am confident that I will lead a fairly normal lifestyle, other than the fact that I consume approximately $90,000 worth of drugs per year. Fortunately, both my wife and I have drug plans that when coordinated cover 100% of that cost. I cannot imagine where we would be without the insurance.

Retour à témoignages personnels

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

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