Age-Related Macular Degeneration

corky60

So here it is a year after lumpectomy.  I was getting all set to celebrate one-year NED and now am diagnosed with Age-Related Macular Degeneration, the dry form.  I am shocked, stunned, anxious.  Can't sleep.  There don't seem to be any support groups nearby and I can't find any online.

 I was told to take an AREDS 2 formula vitamin, fish oil and eat plenty of leafy greens.  Come to find out the greens are supposed to be cooked with a little oil to release the lutein from the cells.  All these years of eating salads, no more of that. 

I am more upset about this than I was about BC.  At least with BC there are treatments.  With AMD there is nothing.  I always thought AMD was an old people's disease.  At 61 I guess I'm old people now.  I suppose some good quality sleep would help but I can't get that.  I am devastated and heartbroken and I just needed to put that out there in the world.  I don't know if this is the appropriate forum but it seemed to be a good place to start.

Thanks for listening.

Monis

Corky, as I know you are shocked and dismayed at your diagnosis of ARMD, don't despair.  I work at an ophthalmology clinic, and we have hundreds of patients that have ARMD and have kept very good vision throughout their lives.  A DX of ARMD does not mean you will lose your eyesight and go blind.  Keep the faith, eat well, take the vitamins, and DON'T SMOKE (HUGE risk factor for ARMD).  New studies are constantly being done, so maybe someday soon there will be a treatment for the dry form.  If you should ever develop the wet form, there are great treatments now available that can make a dramatic difference in someone's sight.  I wish you the best. : ) 

corky60

Thank you Monis.  You have given me hope and that is precious.

JAN69

Corky,  I have the wet MD. This means a sight-saving shot in the eye every 4 weeks.  It sounds horrible, but it is really just uncomfortable for a minute or so.  My background:  When I was 56 (yes that is young) I noticed distortion.  I went to the local opthamalogist and he wasn't concerned, it was "just" dry MD.  A few days later I could tell that something was different so I went to UCLA Jules Stein Eye Institute.  Sure enough, the dry had changed to wet.  The treatments available then couldn't save my vision.  Then my "good" eye developed the dry.  Exactly 1 year after BC dx, that eye developed wet MD.  The good news is that now Lucentis works to maintain vision.  I still can read and thread a needle!  Hope this gives you some comfort.  Best wishes and PM if you wish.  Jan

corky60

Thank you JAN69.  I will PM you.

corky60

My MO says that tamoxifen can cause macular degeneration as well as cataracts.  But it's very uncommon.

Kicks

Ask we get older eye issues do often develope - add in chemo and Er blockers and more likely.

Roughly 2 yrs after last chemo, I developed cataracts in both eyes.  Surgery wenr well.  All Drs saod there was no way of knowing for sure rather or not chemo and Femara/letrozole were reaponsible at all or contributed somewhat.  Was also told that having spent so ,uch time outdoors and having light green eyes could have contributed.  Will never know for sure.

I do not have macular degeneration but do an issue with one macula caused by a less than competent eye specialist.  A year agp late July, I was riding on a tow with Hubby a Sat afternoon when all of a sudden I had quite a few large black floaters show up (never had any before), they stayed for a while amd the turmed into a 'jillion' tiny dots then went away. Sunday was 'normal'.  Mon morn I woke up with what seemed to be a spot of oil in left corner (next to nose) so I called for am appt but was told no open appt for 10 days but if it progresses to get into Urgent Care amd they would get me a referral to a specialist as it sounded like retina might be detaching.  Well, it got worse and Hubby took me up to UC and they got me an appt for the next morning at a local eye center.  That's where 'things' went less than good.  That was on Tues, won't go into everything saic and done in appropriate time frame (no TX then - surgery scheduled for FRI though the sooner TX the better the outcome).    Next morning, could hardly see out of that eye.  Won't go into specifics that day but I finally saw someone at the large eye facility that afternoon (not the specialist).  Had to Raise so much Hades  but they did finally get me referred out to a Specialist in private practice the next day.   Saw him and got rapid care/TX.  He did the least invasive procedure hoping it would work but because of the excessive time before TX, 4 weeks later it failed and surgery had to be done.  Surgery was done the Fri before last Labor Day.  He made a special trip (no other appts) to his office on Sat morning to check me.  Doing as good or better than could be expected after what was not done before I saw him but there is problem in center of macula.   I had seen him in mid June this year for a check up and everything was as it had been the last time I saw him.  2 weeks later, I had gone to town and driving home I realized that the other eye was detaching.  Got home and immediately called his office.  Did not talk to him but to one of his RNs who talked to him.  I was told to get in there as fast as I could safely.    I got there amd it was but caught it quick so he did the least invasive procedire again and it has worked this time thanks to rapid TX.  That was on a Thurs amd he wanted to see me in 2 days to see how it was doimg and to do a cryo-something procedure so again he came in on a Sat morning for just me.  

My point of being so long winded is sight is so precious and so fragile.  Do not accept less than appropriate care just because a facility is large and supposed to have a 'good'  reputation.  Do your 'due diligence' so you can be your best advocate!  

(OT in a way - I have to say with all the negative being said about VA care that I have had fantastic and time appropriate care from VA.  With my IBC, I was immediately out sourced for private care - I do mean IMMEDIATE as in the day I saw my PA.  I was also immediately out sourced to the local eye facility with my first detachment but when they failed me, VA immediately covered me with my fantastic Dr and have given him a voucher good until June 2015 which will be renewed if needed.  My annual mammos are also out sourced to the local Radiology Clinic.  Certainly there have been some problems but I have had excellent care as has Hubby but he has basically no health issues.  Perhaps the larger VA facilities might have more issues due to the greater volume - our is relatively small.)