VF in the News

VW’s Story

My name is VW.  My local ENT found that my thyroid was enlarged, so he ordered a CT scan.  The body scan found three suspicious lymph nodes, which were then surgically removed. Things seemed to get better for a while, but throughout most of 2009, I still felt very tired.

In the Fall of 2009, I felt well enough to go on a 6-month, extended trip in our RV.  During the trip, my sinuses started acting up, so, while home for Christmas, I talked to my local doctor.  He thought it was probably an infection, so prescribed antibiotics and we continued our trip. For the next several months the sinus issue continued.  I would stop along the route of our trip and see various doctors and each would come to the same conclusion – sinus infection and antibiotics.

In March 2010, we were at Las Cruces, NM. I started having severe headaches along with the “sinus infection”. At one point, the headaches were so severe that I went to the ER.  They did a CT Scan and determined I had a polyp.  They gave me some prednisone and told me to go home to see my local ENT.

My ENT told me a polyp wouldn’t cause a headache and that-was-that.  However, the headaches continued, so I saw my  regular doctor and he ordered an MRI.  The MRI showed “a mass” on my pituitary. The next day I had brain surgery and my life changed dramatically.

About 3 weeks later I was diagnosed with Granulomatous Hypophysitis due to Wegener’s Granulomatosis.  It’s a 1 in 10 million chance. I am number 24, worldwide, since 1966.

Published: November 2011

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