Learn about clinical trials and research opportunities in Diagnosis/Treatment section
Learn about clinical trials and research opportunities in Diagnosis/Treatment section
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 information on:
For ocular melanoma patients undergoing radiation of their tumor:
For ocular melanoma patients undergoing surgical eye removal:
"With advances in technology, modern vision rehabilitation can help most patients with any degree of vision loss. [...] This video emphasizes the impact of vision loss on the individual and the responsibility of the ophthalmologist to refer or provide vision rehabilitation." 7-minute video presented by American Academy of Ophthalmology.
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.] Directory provided by VisionAware.org.
VisionAware.org also provides an Information and Referral Helpline at 1-800-232-5463 [toll-free], Monday through Friday, 8 a.m. – 8 p.m. Eastern Standard Time.
"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 info for free specialized technical support services by several companies.
From A Cure In Sight conferences:
"Low Vision Resources" (Dr. John Pino; Oct. 2022; 35-minute video)
"Low Vision Tools for Your Computer or Devices" (Wendy Olson, vision rehab therapist, and Rick Hart, assistive technology instructor; Oct. 2021; 50-minute video)
"Adaptations in the Home for Low Vision" (Wendy Olson, vision rehab therapist, and Rick Hart, assistive technology instructor; Oct. 2020; 40-minute video)
"Adaptive Strategies for Vision Loss" (Dr. Melissa Chun; Sept. 2019; 50-minute video)
Also: "Managing Activities of Daily Living with Low Vision" (Cori Layton, occupational therapist; Dec. 2020 Ocular Melanoma Support Alliance meeting; 55-minute video)
"This is a nationwide state-by-state, county-by-county Directory of Low Vision Support Groups. [...] If you are having trouble learning to live with vision loss or want to meet other people who are also dealing with vision related problems, a support group can be a valuable resource." The database is maintained by Enrichment Audio Resource Services, a nonprofit organization. Note: Select your state prior to hitting the "search" button and then, in the results, sort by county by clicking on the "county" column header.
Online discussion forum
"Discussion and support for those who have lost an eye to whatever cause or have monocular vision." (Public: Anyone can see who's in the forum and what they post.) Information on joining is available at this link.
Support group on Facebook
"An introductory place for all those affected by the loss of sight in one eye. It may be yourself, a friend, family member, or anyone else." Information on joining is available at this link.
Support group on Facebook
"A group for people who are blind in one eye."
(Public: Anyone can see who's in the group and what they post.) Information on joining is available at this link.
"Radiation Retinopathy Intricacies and Advances in Management" Authors: García-O’Farrilla, Pugazhendhia, Kartha, et al; In Seminars in Ophthalmology, Dec. 2021.
"Radiation Retinopathy: Detection and Management Strategies" (Authors: Sahoo, Ranjan, Tyagi, et al; In Clinical Ophthalmology, Sept. 2021)
"Radiation Retinopathy — A Review of Past and Current Treatment Strategies" "Radiation retinopathy is a common and slowly progressive visual side effect of radiation therapy, such as brachytherapy, external beam radiotherapy, proton beam radiation, helium ion radiotherapy, and gamma knife radiotherapy for uveal melanoma and other intraocular or orbital cancers." (Authors: Yu and Schefler; In US Ophthalmic Review, June 2020)
"What to Expect After Radiation Treatment for Uveal Melanoma: A Patient's Perspective" (Dr. Armin Afshar and Dr. Timothy Murray; Oct. 2021 A Cure In Sight Conference; 50-minute video)
"Radiation Side Effects on the Retina: Radiation Retinopathy and Radiation Maculopathy" [Note: The macula is the part of the retina responsible for your central vision, allowing you to see colors and fine details clearly.] (Dr. Heinrich Heimann; Nov. 2020 CURE OM Symposium; 40-minute video)
"Radiation Maculopathy: Now a Treatable Condition" (Dr. Timothy Murray; Oct. 2020 A Cure In Sight Conference; 45-minute video)
"Side Effects of Plaque Brachytherapy Treatment of Ocular Melanoma" (Dr. Peter Hovland; Nov. 2020 CURE OM Symposium; 24-minute video)
This presentation discusses "the initial side effects and those that might occur years down the road after treatment." This broader discussion goes beyond radiation retinopathy. Several other possible eye conditions following treatment are also discussed in relation to the "tumor's anterior or posterior location within the eye." And possible effects on the "eyelids, conjunctiva, and eye muscles" are covered too.
Always report any change in vision to your doctors.
Understanding Charles Bonnet Syndrome
"Charles Bonnet syndrome (CBS) causes people who have lost a lot of sight 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. What people see with CBS fall into two main areas: 1) simple repeated patterns or shapes,
such as grids or brickwork patterns or 2) complex hallucinations of people, objects, 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)
"Charles Bonnet Syndrome in Practice"
This presentation explains features of CBS, which can occur with vision loss in one eye or both eyes or from removal of an eye. (Dr. Nita Odedra; Optometry Today; 10-minute video)
"The different reasons for enucleation and how both patients and surgeons come to the decision." [Note: Includes images of the removed eye area.] (Dr. Heinrich Heimann; March 2021 OcuMel UK presentation; 25-minute video)
"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." [Note: Includes images of the removed eye area.] Patient guide created by the University of Iowa College of Medicine.
"Everything you need to know about prosthetic eyes." [Note: Includes images of the removed eye area.] (Ocularist John Stolpe; Oct. 2020 A Cure In Sight conference; 50-minute video)
American Society of Ocularists provides a search tool for finding "professionals specializing in the fabricating and fitting of custom-made ocular prosthetics (artificial eyes)" in the United States and other countries.
Also, the National Examining Board of Ocularists provides a registry that lists "all currently Board-Certified Ocularists in the United States, Canada, Belgium, India, and South and Central America."
Ocular Melanoma Foundation's Prosthetic Assistance Program
"Financial assistance for OM-related doctor-prescribed ocular and facial prosthetics. [...] Applications will be evaluated solely on need."
Understanding Charles Bonnet Syndrome
"Charles Bonnet syndrome (CBS) causes people who have lost a lot of sight 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. What people see with CBS fall into two main areas: 1) simple repeated patterns or shapes,
such as grids or brickwork patterns or 2) complex hallucinations of people, objects, 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)
"Charles Bonnet Syndrome in Practice"
This presentation explains features of CBS, which can occur with vision loss in one eye or both eyes or from removal of an eye. (Dr. Nita Odedra; Optometry Today; 10-minute video)
New information added to this webpage: November 21, 2022
Links to all external sites re-verified on this webpage: February 23, 2023
Email: Erica@EyeMelanoma.org
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