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 any kind of 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 first four sections:
Additional sections cover the following:
For ocular melanoma patients undergoing RADIATION of their tumor:
For ocular melanoma patients undergoing surgical 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.
Visual hallucinations can be a POSSIBLE response to vision loss after ocular melanoma treatment. This section is provided so that you know you are not alone if it occurs. Always report any changes in vision to your doctors.
CBS could occur due to radiation treatment of an eye tumor or after removal of an eye.
Video: "About CBS" (Low-vision specialist Rhiannon Verran; AMI Accessible Media; July 2021, 5 minutes)
Articles: "CBS Associated with Unilateral Vision Loss: A New Diagnostic Perspective" (Ophthalmic and Physiological Optics, March 2025) and "What Is Charles Bonnet Syndrome?" (American Academy of Ophthalmology, Oct. 2024)
"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. They 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, brickwork patterns, or colors; 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 produced by RNIB.org and The Royal College of Ophthalmologists; June 2024)
Non-Profit Organizations Focused Specifically on CBS: Charles Bonnet Syndrome Foundation (Australia); Esme's Umbrella (UK); and Mary Carmel's Light (US), plus CNIB Foundation's monthly online CBS Support Group (Canada)
"The Charles Bonnet Syndrome Podcast"
Hosted by patient advocate Shaimond Foye.
"Charles Bonnet Syndrome Online Support Group" (US)
Led free-of-charge every Saturday at Noon Eastern Daylight Time by Psychologist Gary Cusick. (Also, 65-minute interview of Dr. Cusick about CBS on The CBS Podcast, Dec. 2023.)
• "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)
• Dr. Tara McCannel discusses "Side Effects of Ocular Radiation Treatment," "What is Radiation Retinopathy?," "How Do You Treat Radiation Retinopathy?," "White Lights & Flashing After Ocular Melanoma Treatment," and "Living with Decreased Vision After Ocular Melanoma [Radiation] Treatment." There are a dozen additional episodes about radiation treatments and post-radiation issues at her Finding Your Way with Ocular Melanoma Podcast (15–35 minute episodes in 2024 and 2025).
Always report any changes in vision to your doctors.
"All About Enucleation [Due to Ocular Melanoma]" (March 2024; 20 minutes) and "How to Stay Engaged with OM [Monitoring] After Enucleation" (Feb. 2025; 10 minutes) (Dr. Tara McCannel, Finding Your Way with Ocular Melanoma Podcast episodes)
"Understanding Prosthetic Eye Side Effects After Enucleation for Ocular Melanoma"
(Dr. Lisa Mihora and Ocularist Starla Allen; Oct. 2024 A Cure In Sight conference; 45-minute video)
Ocular Melanoma Foundation's Prosthetic Assistance Program "has provided many grants for individuals [in the U.S.] with evidence of financial hardship for OM-related, doctor-prescribed ocular and facial prosthetics."
"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)
New information added to this webpage: April 9, 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.