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EyeMelanoma.org

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  • Home
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  • Diagnosis/Treatment
    • Diagnosis and Treatment
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    • Clinical Trials Search
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    • Vision-Related Support
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VISION-RELATED SUPPORT

 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: 

  • Low Vision Rehab for All Vision Impairments
  • Low Vision Support Group Meetings
  • Monocular Vision Discussion Forum and Facebook Groups


For ocular melanoma patients undergoing radiation of their tumor:

  • Information on Possible Eye Conditions After Radiation Treatment


For ocular melanoma patients undergoing surgical eye removal:

  • Information on Eye Enucleation and Ocular Prosthetics

Low Vision Rehab

AAO's Vision Rehabilitation Referral Initiative

AAO's Vision Rehabilitation Referral Initiative

AAO's Vision Rehabilitation Referral Initiative

"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.

Access Here

Low Vision Rehab Services Directory

AAO's Vision Rehabilitation Referral Initiative

AAO's Vision Rehabilitation Referral Initiative

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. 

Access Here

Smartphones as Low Vision Devices

Videos on Adaptive Strategies for Ocular Melanoma Patients Experiencing Vision Loss

Videos on Adaptive Strategies for Ocular Melanoma Patients Experiencing Vision Loss

 "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. 

Access Here

Videos on Adaptive Strategies for Ocular Melanoma Patients Experiencing Vision Loss

Videos on Adaptive Strategies for Ocular Melanoma Patients Experiencing Vision Loss

Videos on Adaptive Strategies for Ocular Melanoma Patients Experiencing Vision Loss

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)

Low Vision Support Group Meetings

Low Vision Support Groups Directory

"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.

Access Here

Monocular Vision Discussion Forum and Facebook Groups

LostEye's General Discussion Forum

LostEye's General Discussion Forum

LostEye's General Discussion Forum

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. 

Find out more

LostEye's Support Group

LostEye's General Discussion Forum

LostEye's General Discussion Forum

 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.

Find out more

"Monocular Vision Support Group"

LostEye's General Discussion Forum

"Monocular Vision Support Group"

 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.

Find out more

Possible Eye Conditions After Radiation Treatment

Radiation Retinopathy: No-Cost Journal Articles

Radiation Retinopathy: No-Cost Journal Articles

Radiation Retinopathy: No-Cost Journal Articles

"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) 

Radiation Retinopathy: Conference Videos

Radiation Retinopathy: No-Cost Journal Articles

Radiation Retinopathy: No-Cost Journal Articles

 "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) 

An Overview of Possible Eye Conditions After Radiation Treatment

Charles Bonnet Syndrome – Visual Hallucinations as a Possible Response to Vision Loss

Charles Bonnet Syndrome – Visual Hallucinations as a Possible Response to Vision Loss

 "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.  



Charles Bonnet Syndrome – Visual Hallucinations as a Possible Response to Vision Loss

Charles Bonnet Syndrome – Visual Hallucinations as a Possible Response to Vision Loss

Charles Bonnet Syndrome – Visual Hallucinations as a Possible Response to Vision Loss

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)

Information on Eye Removal (Enucleation) and Prosthetics

Eye Enucleation for Uveal Melanoma

The Making of an Artificial Eye (Ocular Prosthetic)

Eye Enucleation Guide: What to Expect

"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)

Eye Enucleation Guide: What to Expect

The Making of an Artificial Eye (Ocular Prosthetic)

Eye Enucleation Guide: What to Expect

"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.  

The Making of an Artificial Eye (Ocular Prosthetic)

The Making of an Artificial Eye (Ocular Prosthetic)

The Making of an Artificial Eye (Ocular Prosthetic)

"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)

Find an Ocularist

Charles Bonnet Syndrome – Visual Hallucinations as a Possible Response to Vision Loss

The Making of an Artificial Eye (Ocular Prosthetic)

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 Prosthetic Assistance Program

Charles Bonnet Syndrome – Visual Hallucinations as a Possible Response to Vision Loss

Charles Bonnet Syndrome – Visual Hallucinations as a Possible Response to Vision Loss

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." 

Charles Bonnet Syndrome – Visual Hallucinations as a Possible Response to Vision Loss

Charles Bonnet Syndrome – Visual Hallucinations as a Possible Response to Vision Loss

Charles Bonnet Syndrome – Visual Hallucinations as a Possible Response to Vision Loss

 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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