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pain

MelanieT
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Good day, I am new to this. I was told one year ago I have VHL. I had never heard of it but I am slowly learning. I do have a question for anyone who can help. I have tumors behind my right eye. The biggest ones my MD has ever seen. We have been trying laser therapy for about 5 months with no results. What I am feeling now is pain behind my eye( on a scale out of 10 its an 8). I told my MD about this pain and he told me he has no idea why I have this pain. What I would like to know has anyone else had this pain? They say if they can't make these tumors smaller then by summer I would lose my eye. I am almost blind now in my bad eye. I find it really hard to work because of one eye almost blind and stress on my good eye (its not so good).

Explore topics in this discussion:

Pain Advil Maxidex Stress

6 replies

gale

How is the eye pressure? This can give you pain in the eye as well.

It could also be inflamed, causing a painful eye.

They wanted to remove my eye about 11 years ago because of the pain. The eye got quiet and I have still have my own eye; although not the sight.

Gale

MelanieT

They say my eye pressure is fine but I will ask if its higher now and before. Thanks

claireabell

I am having some problems with my eye at the moment too, the vision has gone all distorted and sometimes its just black and i can't see anything.
I was having lots of problems with reading at work and knitting too, getting headaches as a result of eye strain so i went out and bought a patch, it works a treat, cover the bad eye then your good eye will just work as normal as opposed to also trying to compensate for the bad one. the pain i was getting from eye strain has decreased alot.

you get to act like a pirate too, lol.

MaryP

Before I realized I had VHL, a tumor in my left retina had grown to a massive size. This required numerous laser treatments. I found that for a while after, I also experienced pain. It's difficult to describe, but the back of my eye felt like it was being pinched. (Even that is not a great description.) I believe this pain was directly related to my laser treatments and it did go away. The scar tissue, however, pulled on my macula, leaving me with double vision. I completely lost my depth perception. I also struggled with my work as a nurse, reading, driving at night (with two sets of headlights for every car,) and just generally felt unsettled. The doctor told me my brain would figure it out, and it did. It took a couple of years, but my brain uses the peripheral vision from the left eye and turns the rest of it off. I still don't have great depth perception, but I function normally again. And the pain is gone. There is hope.

buttercup-1980

Yes I had the same problem since they have found a tumor behind my left eye a few years ago. Did they ever consider doing radiation on the eye? I had 12 treatments of radiation for 3 weeks straight and 2 laser eye surgerys. I am blind in the left eye because the tumor is so big and I do have pain ever now and then with it. Are you on any kind of eye drops for pressure for the eyes? I find that helps a great deal with it and I take 2 advil when it hurts. I hope some of the questions that I asked you will help you and you can ask your eye doctor about it. Take care!

Milana

MelanieT

Hello there, I have never heard of radiation treatments. I have been doing eye drops for a week called lumigan and maxidex for three weeks. I live on advil ( about every 4 or 5 hours because of this eye pain). I go next week to get checked and I am going to ask to get my pressure in my eye checked(again) and for sure going to ask about the radiation treatments. Now they found one tumor in each one of my kidneys (I am waiting for results). I just can not believe how fast things have gone wrong. I do wish each and everyone (and their families) hope and lots of prayers. Thanks so much for everyones info.

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