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Phyllis Schreiber - My Story: A Postscript

pschreiberSymptoms of an acoustic neuroma (a sensation of fullness in the right ear, some annoying dizziness) began for me in 1989, but it wasn’t until 1998 that I had my first MRI. That’s when my 1 cm tumor got diagnosed. I’ve been Wait-and-Watch since then for 23 years, or even 32 years if you date back to first symptoms. In 2001 I was interviewed for the ANA/NJ Newsletter by Kristin Ingersoll, and that great memory is still available to read on the website. For this brief postscript, I’d like to add a few updates and some more recent reflections about my experience.

I think the initial delay was because my ENT could find nothing seriously wrong based on the office tests he performed; MRI was only just becoming the first line of diagnosis; and my dizziness gradually subsided. But I continued with annual hearing tests, and when these worsened I finally agreed to go ahead with the MRI. The acoustic neuroma (vestibular schwannoma) was revealed. The ENT recommended surgery for treatment. Surgery even for small tumors was routine at the time. However, I was lucky enough to arrange an appointment with the head of neurosurgery at a top hospital in New York City. He told me to Wait-and-Watch to see if the tumor would grow. Even if the tumor doubled in size to as much as 2 cm, he could still do a successful surgery with hearing preservation. And I should not even consider having radiation treatment.

So in 1998 I became a Wait-and-Watch patient having periodic MRIs at two-year intervals. I think now that I chose this management because if I did need treatment, in future, by that time there would be new and less intrusive methods available. Or is this a more recent optimism? One thing no one explained early on is that hearing would deteriorate regardless of type of treatment: observation, radiation or surgery. I’ve lost all hearing in my affected ear, and my “good” ear isn’t all it ought to be either. I wear a standard hearing aid in the “good” ear and use assistive hearing devices. It’s interesting that my recollection now is that only after my decision for Wait-and-Watch did I discover the wealth of information and support provided by ANA and ANA/NJ. 

My tumor has decreased in size! My last MRI scan, which I reported for the ANA/NJ Directory (March 2020) showed a decrease in size from 1 cm to 7 mm. I have been scheduling MRIs regularly at two-year intervals, but am considering discontinuing this observation routine. It bothers me that two times I have had severe bangs to my head, which my doctors have said could make the tumor grow. But I’ve waited six months before testing again and each time the tumor size has remained the same. Perhaps I’ve read too much about the unpredictability of acoustic neuromas?

All things considered, I feel blessed with my decision to Wait-and-Watch. I’ve always attended ANA/NJ meetings, finding all the present-day information so helpful to me and others.