Hi Rachel, @rwinney. Nice to hear from you. You are right! It is what it is so I am very careful with my decisions. I know how some doctors can be. We do our best with the information we are given. Plus, we know our bodies better than any doctor. I am sorry I did not see your links. I will check them out. Sorry to hear your scar tissue is the cause of your worsening photophobia. It is not fun having eyes sensitive to light. I am always looking to find ways to help. I know blue light or electronic devices do not make my photophobia worse. I found sunglasses outdoors to be very helpful. Thank you, having prescription glasses with the clip-ons has made life easier. I close one eye to stop the double vision for now. That is how I write and use electronic devices.
You can always go see other ophthalmologists for their opinion. It won’t hurt to listen but be prepared to ask questions to help yourself. Take advantage of the resources available to you. You never know if one may shed the light for you to further research your condition. Medical care is always changing for the better. You will never know if a new breakthrough arises unless you ask. Won’t hurt.
I don’t say much to my medical doctors but they do listen to me because they know I am knowledgeable and serious about my health. I believe that is the reason I have survived. I am always looking for the next step to improve on my condition. I feel I owe it to everyone that cares, especially my family. Take care of yourself and continue to be your own advocate.