Diagnosis/Treatment section includes clinical trials and research opportunities
Diagnosis/Treatment section includes clinical trials and research opportunities
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:
Also, for ocular melanoma patients undergoing radiation of their tumor:
Also, 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. Provision of, or referral to, vision rehabilitation is now the standard of care for all who experience 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." You will find the American Academy of Ophthalmology's 7-minute video near the top of its webpage.
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.
Also, on its homepage, an Information and Referral Helpline at 1-800-232-5463 [toll-free] is noted as being available from 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 information for getting free specialized technical support services from several companies.
"Utilize our tips for 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." From APHConnectCenter.org.
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" (Oct. 2021; 50-minute video) and
"Adaptations in the Home for Low Vision" (Oct. 2020; 40-minute video) — both by Wendy Olson, vision rehab therapist, and Rick Hart, assistive technology instructor
"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, you can sort by county by clicking on the "county" column header.
• Support group created in 2007. Information on joining.
• Support group created in 2008. Information on joining.
• Support group created in 2006. 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.
• "Radiation Basics: 1) Radiation Retinopathy; 2) What Is Radiation and How Does It Work" (Dr. Chris Bowen; Dr. Jonathan Chen; Sept. 2023 A Cure In Sight Conference; 60-minute video)
• "Your Eye After Plaque Brachytherapy Treatment” (Dr. David Reichstein, Oct. 2022 A Cure In Sight Conference, 55-minute video)
• "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" (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; 25-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. 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; 2015; Optometry Today; 10-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." Eye Enucleation Guide, which includes photos, was created for patients by the University of Iowa College of Medicine (latest update April 2020)
"Ocular Prosthetics 101: Design and Care" (Ocularists Todd and Tawnya Cranmore; Sept. 2023 ACIS conference; 65-minute video)
"What is an Ocularist?" (Ocularist Starla Hadlock-Allen; June 2023 ACIS interview; 55-minute video)
"Everything You Need to Know About Prosthetic Eyes" (Ocularist John Stolpe; Oct. 2020 A Cure In Sight conference; 50-minute video)
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."
"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 U.S. Board-Certified Clinical Anaplastologists.
International Anaplastology Association provides a list of anaplastologists in the USA and other countries.
"3D Printing of Ocular Prosthetic in Eye Tumour Treatment: Click2Print Artificial Eyes" (Dr. Mandeep Sagoo; January 2023 TEDx Talk; 15 minute video)
"Understanding Charles Bonnet Syndrome"
"Charles Bonnet syndrome (CBS) causes people who have lost a lot of sight to see images that aren’t there. 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; 2015; Optometry Today; 10-minute video)
New information added to this webpage: January 4, 2024
Links to all external sites re-verified on this webpage: September 6, 2023
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