Share with others! EyeMelanoma.org gets you quickly to the info & resources you need
Share with others! EyeMelanoma.org gets you quickly to the info & resources you need
If you are experiencing vision impairment from radiation treatment of your ocular melanoma tumor or from enucleation (surgical eye removal), low vision rehabilitation services and other types of support are available.
On this page, you will find vision-related support for all ocular melanoma patients in the following sections:
Additional Sections:
For ocular melanoma patients undergoing RADIATION of their tumor:
For ocular melanoma patients undergoing surgical EYE REMOVAL:
For ocular melanoma patients who may be experiencing VISUAL HALLUCINATIONS after eye tumor treatment or after eye removal:
"Every patient experiencing changes in vision should know there are a multitude of accessibility options, available in their smartphones (and tablets), designed to help compensate for low vision." Topics from OphthalmicEdge.org include Apple/Android accessibility options, Voice Assistants, and Mobile Apps, plus contact information for getting free specialized technical support services from several companies.
Website sections include "adjusting to vision changes, living independently, caring for yourself, navigating relationships, getting around your environment, redesigning your home and fall prevention, making home and vehicle repairs, maintaining employment, and choosing where to live." (Also available in Spanish.) From APHConnectCenter.org's VisionAware.
From A Cure In Sight conferences:
"Low Vision Resources" (Dr. John Pino; 2022; 35 minutes)
"Low Vision Tools for Your Computer or Devices" (2021; 50 minutes) and
"Adaptations in the Home for Low Vision" (2020; 40 minutes) — both by Wendy Olson, vision rehab therapist, and Rick Hart, assistive technology instructor
Also: "Managing Activities of Daily Living with Low Vision" (Cori Layton, occupational therapist; 2020 Ocular Melanoma Support Alliance meeting; 55 minutes)
Search the directory for "agencies and independent service providers offering low vision services" in your U.S. state or Canadian province. The link below is pre-set for 'Low Vision Services.' (There are other related categories as well from which to choose.) Directory provided by APHConnectCenter.org's VisionAware.
Also, on their homepage, an Information and Referral Helpline at 800-232-5463 [toll-free] is noted as being available from Monday through Friday, 8 a.m. – 8 p.m. Eastern Standard Time.
"Periodic meetings that provide participants with the opportunity to share information and talk about common experiences for mutual support, usually run by a facilitator or a professional who can provide guidance."
This is a nationwide database provided by APHConnectCenter.org to assist in your search. Select "Support Groups" in the drop-down menu and then your state.
• Support group created in 2007. Information on joining.
• Support group created in 2008. Information on joining.
• Support group created in 2014. Information on joining.
• "Radiotherapy in Uveal Melanoma: A Review of Ocular Complications"
Authors: Banou, Tsani, Arvanitogiannis, et al. In Current Oncology, July 2023.
Authors: Jarczak, Karska-Basta, and Romanowska-Dixon. In Medicina, June 2023.
• "Ocular Complications of Radiotherapy in Uveal Melanoma"
Authors: Zemba, Dumitrescu, Gheorghe, et al. In Cancers, January 2023.
See EyeMelanoma.org's "How to Journal Search" for tips on accessing additional journal articles on this or other topics.
(Dr. Guy Negretti; 2024 Ocular Melanoma UK Conference; 25 minutes)
• "Ocular Melanoma Eye Cancer & Radiation Retinopathy: Game-Changing Treatments"
(Dr. Amy Schefler; 2024 presentation hosted by A Cure In Sight; 20 minutes)
• "What to Expect After Radiation for Uveal Melanoma"
(Dr. Ivana Kim; 2024 CURE OM Symposium; 40-minute video begins at 1:58:00 time stamp)
• "Radiation Basics: 1) Radiation Retinopathy; 2) What Is Radiation and How Does It Work"
(Dr. Chris Bowen and Dr. Jonathan Chen; 2023 A Cure In Sight Conference; 60 minutes)
• "Your Eye After Plaque Brachytherapy Treatment”
(Dr. David Reichstein; 2022 A Cure In Sight Conference; 55 minutes)
• "What to Expect After Radiation Treatment for Uveal Melanoma: A Patient's Perspective"
(Dr. Armin Afshar and Dr. Timothy Murray; 2021 A Cure In Sight Conference; 50 minutes)
• "Side Effects of Plaque Brachytherapy Treatment of Ocular Melanoma"
(Dr. Peter Hovland; 2020 CURE OM Symposium; 25 minutes)
Always report any changes in vision to your doctors.
"This guide is intended to provide education about eye removal to patients and families who are considering or undergoing eye removal surgery. [...] It is our hope that this EyeRounds.org guide will help patients better understand the different procedures used to remove the eye, how to best prepare for the surgery, and what to expect during the healing process." Eye Enucleation Guide, which includes photos, was created by the University of Iowa College of Medicine (latest update: April 2020)
"Understanding Prosthetic Eye Side Effects After Enucleation for Ocular Melanoma"
(Dr. Lisa Mihora and Ocularist Starla Allen; 2024 A Cure In Sight conference; 45-minute video)
Ocular Melanoma Foundation's Prosthetic Assistance Program "has provided many grants for individuals with evidence of financial hardship to receive prosthetic assistance for OM-related, doctor-prescribed ocular and facial prosthetics. You must be USA based and your prosthetic provider must also be within the USA. We pay the provider directly and can not do any reimbursements after the fact. So please apply as soon as you are thinking of getting a prosthetic.
"Ocularists are professionals specializing in the fabricating and fitting of custom-made ocular prosthetics (artificial eyes)."
American Society of Ocularists provides a list of Ocularists in the USA and other countries.
National Examining Board of Ocularists provides a list of all board-certified Ocularists in the USA and other countries.
"Anaplastologists are specialists in the design and fabrication of realistic and functional facial, body, and ocular prostheses."
Board for Certification in Clinical Anaplastology provides a list of all board-certified Clinical Anaplastologists in the USA.
International Anaplastology Association provides a list of anaplastologists in the USA and other countries.
"Artificial Eyes in Rehabilitation of Ocular Melanoma Patients"
(Ocularist Jenny Geelen; 2024 AOMA Summit; 20-minute video)
"Ocular Prosthetics 101: Design and Care"
(Ocularists Todd and Tawnya Cranmore; 2023 ACIS conference; 65-minute video)
(Ocularist Starla Hadlock-Allen; 2023 ACIS interview; 55-minute video)
"Everything You Need to Know About Prosthetic Eyes"
(Ocularist John Stolpe; 2020 ACIS conference; 50-minute video)
Also: Recent Innovation —
"Automatic Data-Driven Design and 3D Printing of Custom Ocular Prostheses"
(Reinhard, Urban, Bell, et al. Nature Communications, February 2024 journal article)
• "Understanding Charles Bonnet Syndrome" Patient Guide
"Charles Bonnet syndrome (CBS) causes people with sight loss to see images that aren’t there. Medically, these are known as hallucinations. CBS hallucinations are caused by sight loss and are not a sign that you have a mental health problem. The types of hallucinations people with CBS may experience, fall into two main areas: 1) simple repeated patterns or shapes, such as grids or brickwork patterns, or colours; and 2) complex hallucinations of objects, such as people and landscapes. CBS hallucinations are silent and do not involve any of the other senses." (Patient guide from RNIB.org and The Royal College of Ophthalmologists; June 2024)
• Quick Videos:
• "The Charles Bonnet Syndrome Podcast"
"This podcast is a space to offer awareness, information, support and hope" through interviews of "people with CBS, their caregivers, ambassadors, PhDs, and medical professionals." (2024)
• "Charles Bonnet Syndrome Online Support Group"
"Support group on Zoom for persons with CBS and their families every Saturday at Noon Eastern Standard Time that can be accessed by phone or Internet connection." No-cost support group, run by psychologist Dr. Gary Cusick, PhD. (Also, The CBS Podcast's 2024 65-minute interview of Dr. Gary Cusick about CBS.)
• Non-Profit Organizations Focused Specifically on Charles Bonnet Syndrome:
New information added to this webpage: February 12, 2025
Links to all external sites re-verified on this webpage: November 5, 2024
Any Feedback? Please Email: Erica@EyeMelanoma.org
EyeMelanoma.org, a not-for-profit website, does not contain any advertisements and does not accept funding/donations.
Medical Disclaimer: This site is for informational purposes only and does not provide medical advice.
Copyright © 2011–2025. EYEMELANOMA.ORG. All Rights Reserved.
EyeMelanoma.org has been providing current information on ocular melanoma since 2011.
This not-for-profit website does not contain any advertisements and does not accept funding/donations.
Google Analytics is used within this site to determine the number of visitors. Data is anonymous.