I have macular edema which has caused my central vision to be lost, first in the left eye and now gradually in the right eye too. I notice I have good days and bad days.
Has anyone else had central vision loss with any improvement? I've had laser surgeries and they have helped a little. I guess I just should aim for stability, but I'm hoping for improvement.
Talking to others with central vision loss would help me a lot. Thanks!
Oh strong light is a big problem as is flourescent lighting in most stores. Man this isn't any fun.

Hi Cher: I have central vision loss in both eyes. The docs haven't come up with a definite diagnosis--they're calling it cone/rod dystrophy for now.
The light used to bother me so much I would wear sunglasses in the house. I seem to have gotten used to it now though and it doesn't bother me too much.
It's funny how much activity there is in a dead area of the retina. You probably have the same thing--swirls, flashes, patterns, all kinds of goings-on in the blind spot.

Never give up hope of getting well. With edema you have a better chance I would think.

Torre

Torree.... Can you still drive? I'm lucky to be able to drive, but have enormous problems reading and doing any other close work. Now the TV is getting harder to watch. The faces are blurry and the contrast very bright, almost blinding at times. TV was fine before so I assume my eyes are worsening.
I have recently had multiple lasers in both eyes so maybe it will just take time to clear. I hope, hope.
The scary thing is thinking I will slowly go blind.
What is your prognosis? Are you receiving any treatment.? I know the cones are very sensitive and very much related to central vision and also color recognition.
My color sense is pretty poor with many shades. It's hard because I am an artist of sorts and miss my detail work. I like working in miniature etc.
I have a lot of strange things going on in my eyes too. Tons of floaters at times, flashing lights, even some minor [pain.
And to think just a few years ago I didn't even need glasses!

LOL about the sunglasses in the house! I wear two pairs of sunglasses to drive. My prescription pair and then large aviator style ones over them. Also a sun visor. And I don't drive towqards the west when the sun is getting low in the late afternoon.

Hi Cher. I had to quit driving 5 years ago. That is the worst!
For the computer, I use the magnifier that comes with Windows and it works well for me. I've got a bubble lens glued to my glasses for close-up work (I go to an optometrist who specializes in low vision). It's about 7x or 8x I think. That frees my hands from having to hold a magnifying glass. If I'm watching TV and it's something I really want to see (like LOST :) ) I sit about two feet from the TV screen. Some colours I can't see at all. Prognosis for cone/rod dystrophy isn't good, so I keep hoping that's not what I have.

Ain't life grand?

Torre

Torree I'm sorry about your inability to drive. One thing I notice about you, though, is that you are pretty upbeat. I get so depressed about this vision thing and am so terrified I will get worse.
How do you keep your spirits up?
I've had a pretty bad couple of days. My grandchildren are here visiting and there is a lot of stress involved. They are very active to say the least. I've been living off xanax and I noticed that with the added stress, my vision is poor.
I just so need a sign that things might improve. Have you had any laser work done? It seems that right after I have another round, my vision declines.
I want to hope, but sometimes I feel so down. It's just devastating.

Cher: I was terribly upset when it first started. Only good thing about anxiety attacks is you lose weight :) Not a diet we would recommend though, is it?

My eyes have gotten worse over the last five years but the progression is slow so I don't get into panic mode. I don't have leakage so I've had no laser surgery. If I woke up tomorrow in a worse state I'm sure I'd be a basket case. It's just that you can't maintain a state of terror for a very long time. I also have a husband to look after me.

My optimism is due to faith, for lack of a better word. I believe nothing happens by chance, that we form our own reality and that the body can heal itself of just about anything. At least, I think I believe that :) I haven't been successful in healing myself, but I don't give up hope that it can happen. When I do get depressed, I think...oh, well, life is short and I'll be dead before I know it, ha, ha.

Torre

Torre, I have tried to make the most of each day because if the worst does happen and my eyes progress in a downward spiral, at least I will have not given up and lived each day to the fullest. I wonder if there have been others on this board with severe vision loss? Most of the problems I see are fairly common and don't seem to be impairing vision too greatly.
My vision loss happened fairly suddenly but there was some blurring a few months before. If only I hadn't passed it off as normal part of aging, etc. I had more excuses! I thought I just needed new lenses.
Maybe if...I had just gotten to the doctor sooner it wouldn't have gotten this bad. The odd thing is that it seemed to improve after the first round of lasers and then weakened. I'm now into my second round of laser surgeries
and my vision is weak to say the least. I'm praying that it will clear somewhat after my eyes stabilize from the lasers.
Well. all there is is hope I guess. We all have to hang in there through thick and thin. They say that God never gives you more to bear than you can handle, but he sure knows how to test us!
It's just that I can't think of anything much worse than blindness.

"It's just that I can't think of anything much worse than blindness."
I can. A long list of things starting with paralysis.
Macular problems often don't do damage beyond the central vision. How is your peripheral vision?

T.

Perliphirelvision is better than central, but the whole effect is blurry because central is so poor. The sun is so blinding to me that I wear two pairs of sunglasses with a visor too. I think the worst part is not being able to see faces well. I don't notice expressions anymore/ If the light is full on the person's face I can see it much better, so that is good.
I guess people's reactions to me don't bother me much anymore since I can't really notice, that's probably a plus. At a distance, people's faces are very distorted, I guess due to the edema.
Torre it's so great that I have met you here. I have felt so alone with this.
I don't just have macular damage I also have damage to my retinal wall. But I do pray for some sort of a breakthrough in the future to treat it more aggressively. Perhaps stem cell research? Anything....
I am actually an artisan so it has hit me especailly hard to lose my ability to see fine, small items closely. I guess I was very lucky to have made so many things in my life and be able to really appreciate them now.

Cher: I can't recognize people either. It's very embarrassing. Because I can get around without bumping into things, people don't realize how bad my vision is.
I got a pair of very dark sunglasses from a welding supply store. They look just like regular plastic sunglasses. I also have a pair of safety glasses that are very dark. They're not prescription of course, but my script isn't very strong anyway.
Yes, it's very hard to give up doing the things you love. I can still knit but can't crochet. Do you have a low-vision optometrist in your area? He or she could help with different magnifying devices. My mom who has AMD has a close-circuit tv where the reading material is displayed on a monitor. It's extremely helpful. I'm in Canada, so I'm a client of the Canadian National Institute for the Blind which provides all kinds of free services and training. Do you have an equivalent in your state?

Torre

I can still sew a little, but cannot do quilting anymore. I have lost a lot of color sense and can't differenciate betweens lighter blues greens etc. Even yellow and pink baffle me. The quilting stitches are very hard to manage and the machine is tough also. I used to be such a perfectionist!
The miniature work I used to do is out of the question but at least I have my dollhouse and all the handmaqde furniture, quilts, peti point rugs, curtains and quilts I love.
My internist referred me to the best optomitrist in the area and she says they should be able to set me up with the best refractive solution. Their glasses are second to none in craftsmanship. I'm just waiting for my eyes to settle down after this latest round of laser treatment. I just spent $400 on new glasses in January and my eyes have changed since then so I need to make sure the new ones will last for awhile. Until then, I'm getting by with ordinary magnifing lenses, some lighted.
As far as associations to help cope, I was looking for a support group and my opthamologist gave me a national Lighthouse for the blind book with numbers, etc. I'm surprised that he doesn't have a list of groups in the area. I don't consider myself blind so I'm not too keen on joining a blind group. It would be depressing.
Although my opthamologist is an excellent doctor, he is more the pragmatic scientific type and doesn't get involved with the emotional side of eye disease. But I was surprised that his nurses didn't seem very knowledgeable either.