012: Acoustic Neuromas and Finding Peace atAl-Anon with Sonora Chase
Uninvisible Pod with Lauren Freedman
Shownotes Transcript
Sonora Chase is an actress and writer living in Los Angeles. She has now survived not just one, but TWO acoustic neuromas – benign, fast-growing brain tumors that have affected her hearing, balance, spatial awareness, and facial nerves. In this episode, she shares her brave story – which involved a battle with health insurance companies, the steep learning curve of discovering her rights as a patient, and one big happy ending: getting the doctors she wanted and having both tumors removed. In addition to her experience surviving her own invisible illness, Sonora is also the survivor of others’…she shares about the importance of finding community as you navigate mental illness and addiction, and how Al-Anon has been an irreplaceable resource for her as the loved one of individuals with addiction.
Join us as Sonora shares…
what an acoustic neuroma is
that a fellow actor who also had an acoustic neuroma: Mark Ruffalo
the difficulties of navigating the health insurance system with an acoustic neuroma
that as her symptoms continued, she experienced facial paralysis without pain (but with numbness); and that it took her longer to discover the hearing loss associated with her acoustic neuroma
that she didn’t realize something was really wrong until she realized the extent of the hearing loss in her left ear
that the tech at her MRI was especially nice to her – and she suspects it’s because he could see the growing tumor in her brain
that her acoustic neuroma was pushing her brain stem over, which causes trouble breathing and contributed to intense fatigue and balance issues, as well as constant nausea
that visual stimulation also contributed to fatigue – half her brain was working twice as hard to keep up. Her fatigue persists to this day.
that her inner ear was removed with her tumor, and she had to relearn how to walk after surgery
how daily chores and tasks look when you are a Spoonie – and how she has to be deliberate in her choices
her amazing surgeon, Dr. Rick Friedman, neuro autolaryngologist, and the translabyrinth surgeries he has performed to treat her acoustic neuromas – which involve a medically-induced coma
that acoustic neuromas are generally considered inoperable at 4 inches…and Sonora’s first one was 3.8 inches!
that, based on continuity of care, patients can push for the same doctors for major health interventions – even if health insurance providers say “no”
for three months, she spent 8-9 hours a day on the phone pushing her health insurance providers for the care she needed
that CA Dept of Managed Healthcare exists to assist patients in imploring health insurance companies to do the right thing
that the fight for proper healthcare taught Sonora about her rights as a patient – but it took three months, because several operators weren’t even aware of their company’s legal obligations
how important patient education is; that it is key to know your healthcare rights, and to be KIND to the messengers on the other end of the line
how getting her surgery at UCSD was one of the best experiences of her life, because the Acoustic Neuroma Center at UCSD is incredibly well-designed with patient sensitivities in mind
that she is still waiting for a surgery to “install” a bone-anchored hearing device (Baha) so she regains some hearing in her left ear
how she connects to spirituality to manage her health from a psychological perspective – through Buddhism and crystal healing
some of the complications of brain surgery, including a brain leak – which Sonora suffered after her second surgery (and is relatively rare)
a personal analysis of the pain scale – that all pain is relative
that Sonora is not only a survivor of invisible illness where her tumors are concerned, but that she has also survived loved ones with addiction problems, and regularly attends Al-Anon meetings
that she credits the Centre for Neuro Skills in Encino for helping her get back on track after her first surgery
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