Persistence and patience with pituitary disease

From our friend and former Miss Nevada Christina O’Neil-Bourne  – A remarkable visual of Christina’s latest challenge with Pituitary disease.  The photo on the right was taken recently.

Living with pituitary disease is not just about doctors and treatments. I have learned over the last decade that pituitary tumors require a healthy dose of persistence and patience!Patients are often told by physicians that pituitary tumors are “no big deal,” or “easily treated”, but what happens when those statements are not true?

In 2005 I was diagnosed with a prolactinoma. Like many people I was told that the medication would take care of the problem and I would be fine. A decade later, I can tell you that nobody discussed with me what would happen if the medication failed. I know now that the doctors didn’t discuss it with me because they were not educated enough to know what I needed. As an educator, I knew that the best way to solve my problem was to begin researching, learning, and applying my knowledge. I discovered that if I wanted to regain my health I was going to have to use what I had learned to fight for high quality health care.

I began by finding specialists in pituitary disease. I then asked for a referral. That referral was denied by the insurance company time and time again. However, I had great general practice physician on my side and with my persistence to get the health care I deserved, it was eventually approved. In 2007 I was able to be seen by a great team of pituitary specialist and they changed my life. I underwent surgery and spent many years enjoying being tumor free. Those doctors did not tell me I was “cured”, but instead gave me a healthy dose of reality about pituitary disease. I was told that there was always a chance of recurrence even after successful surgery, and I was told I would need life long monitoring.

For more than six years I was “monitored” and was doing well, but then all of my symptoms began to return. The difference this time was I had a team of doctors who knew what they were doing and recognized immediately that not only had my prolactinoma come back, but that I had something else happening that required additional medical care that they could not provide in my small town.

Once again I had to fight with the insurance company and this time had to travel to a different medical center nine hours away from home. Upon my initial visit with my new team of pituitary specialists, they were very concerned that my prolactinoma had been joined by a second tumor or had become a dual secreting tumor. I was presenting with the signs and symptoms of Cushing’s Disease and was becoming increasingly more ill by the day. After many tests, it was determined that I did not have Cushing’s Disease, but instead had formed Polycystic Ovary Syndrome (PCOS), which can mimic the symptoms of Cushing’s Disease.

Today I am happy to report that my body is healing. My tumor is responding this time to medication and does not require surgery this time, and I now have my PCOS under control with a combination of medication and diet.

I understand that if I want to continue to feel well, I must listen to my pituitary specialists, take my medications, follow through with my testing, and be willing to travel for the health care I deserve.

Pituitary disease affects every patient differently, but persistence and patience it is possible for most of us to regain our health.

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