Wet Macular Degeneration at 51 Years Old

by Teresa
( Ohio)

I never missed my annual eye exam as I always kept a supply of contacts on hand.


How could my eye doctor have simply "dismissed" my complaints that something was wrong? During a casual conversation with my brother, I mentioned this and he strongly suggested I go to his eye doctor. So glad I listened to him and went to his ophthalmologist.

In April 2009 I was referred immediately to a retina specialist and was diagnosed with wet macular degeneration in both eyes.

What a shocker-I didn't even know what it meant. My left eye has the "twisting" with gray distortion in the center. My right eye has no distortion, thank goodness.

I am female born in 1958, have never smoked, not obese, and it's not in my family history. I'm in good health, take no medications and I exercise regularly.

Treatment started with Avastin injections,in both my eyes for maybe 5 months. It seemed to help shrink the hole but the results were inconsistent.

The doctor wasn't pleased with my results with Avastin. It seemed to work at the beginning but we seemed to be getting nowhere.

With a switch to Lucentis my eyes responded better. I know studies showed it to be the same as Avastin but not in my case. Lucentis helped shrink the sizable hole but it wouldn't totally seal the leak.

The injections continued in the left eye until September of 2010. The right eye was doing OK. No shots since June 2010.

The shots are indeed risky and results were inconsistent so the doctor suggested photodynamic therapy (PDT).

I agreed we needed a different approach. October of 2010 I received photo dynamic therapy (PDT) in both eyes. About a month after the PDT treatment I had a posteriour vitreous detachment (PVD) but thankfully not a detached retina.

It has left me with some rather large floaters. In late December 2010 I received a shot in the left (bad) eye.

February 2011 I saw the retina doc for my regular follow up and it was anything but typical. He said the leaks were closed! I am happy to report that 2011 has been a NO SHOT YEAR! I continue to see my retina specialist regularly.

I hope my experience can help someone else.





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Nov 01, 2011
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Congratulations on your success
by: Susan

Dear Vicki

I am also 51 and have wet macular degeneration in the left eye and dry in the right. My doctor switch from Avastin to Lucentis to get better result to improve my eyesight. Results with both drugs were mixed. I never had full vision return. There is a lot of cloudiness in the one eye. I am hoping the right eye will stay true.

A whole year without injections sounds very encouraging! I have just gone about 75 days without needing one: such a releif from they typical 30 to 40 day interval. Good luck to you It is wonderful to hear a success story.

Sometimes I worry about the next 30 years and how much sight I will have left and for how long, but I have learned to take one day at a time and enjoy the beauty of sight each day!

May you be blessed with continued success.

Susan

Oct 30, 2011
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Thanks for your story
by: Vickie in Michigan

I also am a fit, healthy person who was surprised by my diagnosis with dry macular degeneration a couple years ago, in my mid 50s.

I guess I've been in a certain amount of denial about this thing ever progressing quickly. Thanks for the heads-up. All the the stories on this site are convincing me to me more diligent.

It's great that your eyes have stabilized.


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Wet Macular Degeneration

by Anita
(London, England )

I am one of the lucky ones ............... I have been having the Lucentis Injections.

From the very first one I found improvement and so it continued with each injection.

I have had 9 injections and when I saw the consultant again on the 23rd March I was told that all the fluid etc., had gone and all that was left was a little scarring at the back of the eye.

I was told to go get some new glasses prescribed because my vision in that eye was now a lot sharper ........

I am so relieved as both my mother and grandfather were nearly blind with this eye disease - that was in the days when they could do nothing to treat it with.

So I hope and pray that the eye holds and does not get problems again :)

REPLY

Thank you Anita for sharing your story with us. Keep us posted!

Leslie

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Dec 31, 2013
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Wet AMD
by: Hidge

I developed wet AMD 2 years ago, which I think happened after I had had chemo for lymphoma. I have it in both eyes and up to press I have had 18 Lucentis injections in my right eye and 17 in my left eye.

I am at the hospital usually twice a month for injections or scans and it has become a way of life to me now. My biggest worry at the moment is whether they will take my driving license away.

Has anyone else driven with this concern?

REPLY

There are low vision centers that can test your ability to drive with the aid of special telescopic glasses. A book called, Driving With Confidence: A Practical Guide to Driving With Low Vision may also help answer some of your questions. You can read more about driving with macular degeneration here:


http://www.webrn-maculardegeneration.com/driving-with-low-vision.html

Kind Regards,

Leslie

Apr 11, 2012
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Update on My Wet Macular Degeneration
by: Anita

I had my eyes tested for new glasses today as suggested by the hospital.

The optician said that had I not told him I had been having treatment for Wet Macular Degeneration he would never have known I have had it.

He also said that my vision had improved so much that it was nothing at all like it was when he last saw me 4 years ago and was like looking at a different eye entirely.

Because he has found no indication of me having had the disease.

Made me feel good about it - but I still worry about how long it will last ............

That is something which is very hard to stop doing !

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How having Wet AMD has been for me.

by Nancy
(Concord, NC)

A Happy Life With Wet Macular Degeneration

A Happy Life With Wet Macular Degeneration

My macular degeneration was discovered when I had cataract surgery. I have been having Lucentis injections in my left eye for over 3 years and have 20/20 vision.

I still had sight in my right eye when I started this treatment, but received an injection of Avastin during the first visit and by the next appointment (6 weeks) my sight was gone in the right eye. The doctor said that in that length of time, I even had developed scar tissue.

Anyway, I spent the first year terrified that I would be driving down the street and my sight would just go..... I did have an experience with having the length between injections stretched out to 2 months, and I could tell from the changes in my sight that I needed to go in.

I didn't need an Amsler Grid to be aware of the changes. I think I am the only patient that receives Lucentis out of patients in 3 different locations.

I am most thankful for the progress in treatment and have high hopes that I will continue to get to read, look at my grandchildren, work and see the beauty of nature. I met a woman at the doctor's office that said she felt guilty that she was going to pass this along to her children. I told her that my parents did not have AMD, but my uncle did and one grandparent had blindness - not sure what kind. I think she felt encouraged.

We need to encourage each other as much as possible. It's a lonely feeling to not know anybody else with macular degeneration. Thanks for giving me a platform.

REPLY

Thanks Nancy for sharing your story with us and for encouraging not only your fellow patient at the doctor's office but all of our WebRN-MacularDegeneraiton.com readers as well.

Kind Regards,

Leslie

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Apr 27, 2013
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No Night Driving
by: nancy

Even though I have 20/20 in my left eye, I can not see good enough to drive at night. It was terrifying the last time I tried.

Also, my depth perception is worse. As I was turning around, I thought I was stopping in time, but hit a stone wall (literally).

No damage to the wall, but I had to get a new bumper $560. Yuck. I just have to be more careful.

It's the items that are in the dark or people in dark clothing that I can't see. I do take a little flashlight to look at tags on items in the stores. My doctor said that everyone who lives long enough will have macular degeneration. It's got to be something that take's us out. I am keeping my will up-to-date.

Some people have heart attacks and others are just nibbled to death. Ha I think the last one is me. Cheer up. I believe that this world is not my home, so these troubles are just temporary in the scheme of things.

Nancy

Apr 02, 2012
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Response to Anonymous - Lucentis Injections
by: Anonymous

No my sight did not return in my right eye after Lucentis injections.

My doctor has discontinued any injection in my right eye. I guess he thinks that the sight won't come back. You may have noticed that the doctors aren't real chatty about your future with AMD.

The first time I was in the doctor's office, all kinds of sad things happened. A man had a detached retina, a woman had just found out that she was losing her sight and was crying. I thought about how doctor's offices differ.

The next time I came, I brought cookies for the staff. This is kinda sick, but funny. A patient was there that couldn't hear very well and the doctor was yelling at him about the injections. The patient said "You mean an injection in my arm." People in the waiting room just groaned almost in a chorus when he said "No, in your eye."

I told them that it wasn't bad. I told the doctor there weren't too many experiences where you could actually see the fluid come into your eye. I think it freaked him out. ha ha

Apr 02, 2012
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Thank you Dr. Wong
by: Anonymous

Dear Dr. Wong,

Thank you for your answer it makes a lot of sense. I realize even though it is not practical to see the retinal specialist along with the regular eye specialist, in general it may be important to do so when a cataract is developing in an older person, before it obscures the problems. The scenario happened to my Mom last year. They removed the cataract, she did not improve and they found macular degeneration. It was very disappointing.

I am over 50, so if I develop a cataract I am definitely going to check with a retina specialist if I can, to make sure macular degeneration is not present. I hope this does become a more common practice.

It sounds like there needs to be more early detection.

Thanks again.

All the Best, Deb T

Apr 01, 2012
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Ref Nancy's views
by: Anonymous

It is nice to know that Nancy's eyesight improved with Lucentis. After having lost eyesight of her right eye, has her eyesight of this eye returned after Lucentis injections?

Mar 31, 2012
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On Wet Macular Degeneration
by: Jean in Boston

Four years of Lucentis injections have helped stabilize vision in my left eye to 20/30. Though the fluid is greatly reduced in the right eye, I still have no central vision in it after nearly 2 years of injections, though my peripheral vision is good in that eye. I continue to be hopeful.

Having worked monthly injections in both eyes into my routine, it's much less stressful than it was at the outset. Life is good.

Much of that is due to the existence of opportunities to hear about the experiences of others. Thanks so much for maintaining this website.

Mar 31, 2012
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Finding Macular Degeneration After Cataract Surgery
by: Anonymous

How come people find out about their macular degeneration after cataract surgery? That seems to be common. Why not before?
All the best to you, Deb

REPLY

Dear Deb,

There are several reasons why patients "find out" about macular degeneration just after cataract surgery.

First and foremost, the vision fails to improve after the cataract is removed. Everyone is disappointed.

Two eye problems become more common as you get older; cataracts and macular degeneration. Often the cataract prohibits a great view of the retina so the macular degeneration creeps along .... everyone thinking it's the cataract. Sometimes the two eye problems develop hand in hand, but in the end....you'll need to take the cataract out anyway.

In a perfect world, everyone considering cataract surgery should see a retina specialist....but that's impractical. Remember, too, that usually the cataract surgeon has no retina training.

The worst thing about this is the unexpected disappointment.

Randall V. Wong, M.D.

Dr. Wong is a Retina Specialist in Fairfax Virginia

Retina Specialist


Mar 30, 2012
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New Macular Degeneration Drug
by: Bill Roudebush

I, too, am a long time user of Lucentis (40 injections).

This week my doctor started me on Eyelea, a new drug that is supposed to be effective for two months instead of one. If it proves out, that will be a good step forward.

Thanks for your upbeat message and I wish you the very best.

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Macular Degeneration - I AM NOT BLIND

by Phyllis
(Sacramento, California)

In January 2008, I lost my sight suddenly while driving on an off ramp on my way to a Sunday brunch.

Thanks to cellphones I got home, called my health care provider, at UC Davis, and received a call back in 20 minutes from an ophthalmologist on that Sunday Holiday weekend.

The next day I was taken to UC Davis hospital on Martin Luther King Holiday and examined and told I had Macular Degeneration and that they would call me the next day when the Eye Clinic opened.

They called the next day at 7;30AM and hurried me over to the clinic. After 6 hours, three retinal surgeons, and multiple retina pictures, Dr David Telander started me on Lucentis injections, less than 50 hours after the eye eruptions occured.

Every four weeks I went back for more injections. After the third round, I began to see fog, then figures moving. Slowly, my vision returned and by March I was told I did not need more injections because I passed the 20/20 vision test.

I credit the speed in which I was treated, Dr. Telander, and God with my recovery. To repay God, I worked for three and one half years as a volunteer for The Foundation Fighting Blindness, going to seminars, here in Sacramento and in San Francisco, and staying up all night studying eye diseases on my computer like this column.

I have given over twenty-five lectures about Gordon Gund and the Foundation,and on eye diseases research and healthy things to do to help yourself - mainly not give up hope

I answered calls for information and help until the Los Angeles office called and canceled my work.I guess God thought I payed my debt. I still take eye vitamins with lutein, fish oil, eat an eye diet with fish three times a week, etc,have regular eye exams, and still have 20/20 vision following my own lectures advise.

I once trained teachers for Baylor University so it was an easy transition to teach vision health.

Phyllis

Sacramento, California

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Aug 11, 2016
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Wet AMD
by: Anonymous

Just recently been diagnosed with wet AMD in one eye. Had eyelea injection yesterday very quick so didn't have time to even think which was great.

Painful after for at least for eight hours. Took loads of painkillers so ok. Does anyone know when you might see improvement from injection.

Hoping my prayers will be answered.
God Bless everyone

Oct 31, 2011
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Thanks!
by: Sharon

So very helpful!!! I pray that you will continue to do well, and I thank you for all that you do and have done to help others with AMD.

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