Connect
← Return to Map Dot Fingerprint Dystrophy
Discussion
Comment receiving replies
Hi Rhoda! I'm Rachel and I found some of what you said very interesting. I have Fuch's dystrophy. I needed cataract surgery and cornea transplants when I was 43. Between the 2 procedures, my sensitivity to light was to have been dealt with. Unfortunately, it was not and grew worse. I know all about hiding out in the dark, living under hats and behind sunglasses. No more movie theaters, fireworks, concerts etc...Light sensitivity is normal during the healing time after surgeries but my healing apparently never ended. I used to drive home in the dark from work wearing dark sunglasses. Kept my cataract glasses for a long time. The snow and rain would make matters so much worse due to glare. It was very dangerous. Always worried about not seeing a pedestrian on the side of the road. My cornea specialist could never understand why this was and I was referred to a neuro-opthlemologist who blamed it on scar tissue from my past surgeries and oh yeah, I have blue eyes...what a crock! Last winter I finally threw in the towel. It's been 6 years now and each year has gotten worse driving at night. Sharp pains like daggers in my eyes on top of enducing migraines made me give up driving. Even as a passenger I need to wear hats and dark glasses and keep my eyes closed tight when car lights flash by. Often I may lay down in the back seat to avoid well lit areas, traffic lights and cars. This year I was diagnosed with small fiber peripheral neuropathy and can not help but wonder if the fact that there are a large amount nerve fibers in the corneas, it may be the contributing factor to my photophobia. Could neuropathy possibly do this? There is a cornea confocal microscope used for diagnosing SFPN so it only makes sense to me that there would be a connection.I have a message in to my neurologist to shed some light (no pun intended) and my cornea specialist has yet to weigh in. I'd appreciate your thoughts or anyones thoughts for that matter. Mayo Clinic in MN turned me down so why not ask here?Thanks a bunch and I hope you are having an uplifting day!!!
Rachel
Replies to "Hi Rhoda! I'm Rachel and I found some of what you said very interesting. I have..."
Connect
@rwinney hi Rachel. Nice to hear from you. You have had a really rough time of it! Glare and bright light bother me all the time but especially post operatively. I’ve had a few years with some stability from the corneal dystrophy and have been able to drive. Some destabilizing now, may need more laser surgeries, not yet at the point.of needing transplant. I have another unrelated illness that I am also struggling with, improvement with help from Mayo in Rochester. I’m not totally sure about all the factors that contribute to the photophobia. For me, it’s that the layers of the cornea are unstable and not flush with the eye. They don’t seem to act like the filter they are supposed to be. The neuro ophthalmologist continues to be helpful to me. Maybe yours will have some ideas? I think is good that you are getting the nerve and corneal specialists to weigh in. I hope they have some ideas. I know mine is worse as the day goes on and glare is especially uncomfortable. When the nerves are inflamed it is worse. Sorry for your struggle and I hope we can stay in touch to share the battle and potential solutions! Best wishes, Rhoda.