I would like to tell the story of my husband, Patrick. Since his teens, Patrick had a hoarse voice, mediocre balance, and had very low energy when stressed. But these symptoms did not worry us very much. In June 2009 (at age 29), during the birth of our daughter, Emeline, he had vertigo and was sent to the emergency room. The doctors there initially thought the vertigo was caused by vestibular balance problems and recommended that Patrick see an ear/nose/throat doctor (ENT) for testing.
The ENT determined that the vision, voice, and balance issues were limited to the right side of Patrick’s body. An MRI revealed a mass on the base of the cerebellum, and Patrick underwent two biopsies. The first was unsuccessful, but the second showed that the mass was not cancerous, but an inflammation. The doctors were unsure of the cause and thought it may be an autoimmune disease. We were not happy with the medical monitoring at the first hospital, so we sought another opinion. At the second hospital, doctors agreed on the diagnosis—primary central nervous system vasculitis (CNSV), and an oncologist and neurologist began monitoring Patrick’s condition.
In February 2010, my husband started taking a corticosteroid, Medrol (a brand of methylprednisolene), and the treatment seemed to work well. Between February and September, the doses were gradually reduced, but Patrick had a relapse. A nephrologist was added to Patrick’s team of doctors who decided to treat the disease more aggressively. My husband received high doses of Medrol (intravenously) for 5 days and then underwent chemotherapy using Endoxan (a brand of cyclophoshamide), an immunosuppressant for six sessions (from November 2010 until February 2011). In the midst of that treatment in late December, my husband had several vertebral fractures as a side effect of treatment with corticosteroids. His mobility has been much diminished since and he has started receiving treatment for osteoporosis.
This past March showed that the inflammation appears to be under control again. Doctors replaced Endoxan with Imuran (a brand of azathioprine), another immunosuppressant primarily used for transplant patients, and are continuing to reduce Patrick’s Medrol dosage. A recent MRI was positive, so the news is reassuring at the moment.
We still hope that treatment will work and that doctors will find a cure. Patrick had to leave the job he loves, as a chemistry teacher in secondary schools, but hopes to resume teaching someday. This disease scares us because very few people are affected, and according to some studies, the most progressive vasculitis (which seem to be the case for my husband) seem to be less responsive to treatment and lead more easily to death. We hope someone will be able to help us. We must have faith and believe in medical advances. We are young and want to live a long life together with our family.
Published: July 2010
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