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Resources

Choosing a Healthcare Provider

It is the individual patient’s responsibility to evaluate the healthcare professional, hospital or clinic in which they are planning to obtain care. The following are a series of questions to consider when choosing a provider for Ramsay Hunt Syndrome: 

  • Does the physician or healthcare provider have experience with patients with Ramsay Hunt Syndrome? 

  • Is the physician board eligible or board certified in the relevant specialty? (ex: otolaryngology, neurotology (an ENT that subspecializes in hearing care), facial plastic surgery)

  • Is there a multi-disciplinary facial nerve team (i.e., surgeon, therapist)?

  • If considering surgery, ask the surgeon how many of the procedures you are considering they do in a typical year

  • What percent of their practice is facial paralysis? What percent of their practice is facial therapy? Balance therapy? 

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Links to Other Resources 

- Facial Palsy UKhttps://www.facialpalsy.org.uk/causesanddiagnoses/ramsay-hunt-syndrome/ has more helpful information on RHS and recovery approaches

- Living Rare Study: LivingRareStudy.org (http://livingrarestudy.org/?fbclid=IwZXh0bgNhZW0CMTAAAR3WFRaCtcE3yumj4sFF6rD_s5nSd5fAXXWkPeVczsa9mDKb9YJRORqecIk_aem_yeXOq8Cd7d10R3O4zu1ZvQ

- Questions about the Shingrix vaccine: https://us.gsk.com/en-us/media/press-releases/new-long-term-data-show-shingrix-continues-to-provide-high-protection-against-shingles/

- Optimizing the medical management of idiopathic facial paralysis: Michael J. O'Reilley, M.D., Georgetown University, American Academy of Facial Plastic Reconstructive Surgery (AAFPRS) Annual Meeting 2021. https://www.youtube.com/watch?v=HFhjy6QOEKg

- Fix My Face: Expert Advice for Maximizing Recovery from Bell’s Palsy, Ramsay Hunt Syndrome, and Other Causes of Facial Nerve Paralysis, by the Foundation for Facial Recovery, available where books are sold. 

- The Hunt for My Smile: Stories of people who lost their smile to facial paralysis, and their journey to find it again, by  Amy Sameck, available where books are sold. 

Lightkeepers: The Power of Becoming Safe Harbour in the Mental Health Crisis by Mike Shoreman

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