I've been participating in an acoustic neuroma quality of life survey put together by the doctors at the Mayo Clinic. They're following over 2,000 patients over a ten year period, tracking things like balance, facial function, hearing, anxiety, etc. They have begun to publish some of their findings. Even though the study is not fully complete, they already think they've learned a lot. They just sent an email to all the participants. I'm pasting in below an email which I thought people might find interesting. The two headlines that seem important to me: the worst part for almost everyone is the first six months after diagnosis. And, almost all people are happy with the treatment process they chose. Very interesting.
FROM THEIR EMAIL:
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Other recent publications based on the data we have accumulated, thanks to you, include a December 2018 paper in Otology Neurotology that showed most people experience the worst quality of life in the first 6 months after diagnosis, most notably in people who have not yet made a decision regarding what they are going to do with their tumor (observe, radiate, or operate). We think this is likely due to the shock and worry of being diagnosed with a tumor. As noted above, in July 2020 we published the prospective data in Otolaryngology Head and Neck Surgery that showed treatment choice made little difference in a person’s quality of life but rather the diagnosis itself was most impactful in negatively affecting people’s quality of life, particularly as it relates to the anxiety subscale. In September 2021, also published in Otolaryngology Head and Neck Surgery, we learned from you that neither surgery, radiation, or undertaking observation alone is best for a particular symptom such as tinnitus (ringing in the ear), dizziness, or headache. In other words, we don’t make these individual symptoms necessarily better by intervening with one treatment modality or another. In January of this year, also in Otology Neurotology, we published what we feel is a very simple and elegant study based on your response to the question, “Are you satisfied with the treatment you chose?” Happily, the great majority of people are indeed satisfied with their choice of treatment. However, our data does suggest that people who initially observe their tumor before proceeding to either surgery or radiation reported the best quality of life. Perhaps, giving yourself time to “get used to” the diagnosis of a vestibular schwannoma and better understand the implications is beneficial.
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