My Experience with Wet Macular Degeneration

by Dorothy
(Boise, ID, USA)

I had a sudden orange patch in my right eye in September 2010. I waited over a week before I called my husband's eye doctor.

After examining me, and saying he thought it was wet macular degeneration, he sent me to a Retina specialist just down the street, that very day.

The specialist confirmed the eye doctor's diagnosis, and started the treatment right away. Examinations, photos, and a shot in my right eye.

I have had seven treatments including the shots, and the last one without the shot. I have had very little discomfort.

My vision early improved to 20/50, and has stayed that way. I have no problems seeing in daylight, but dim light and night is a slight problem. I read just as much as I ever did.

I have a slight dry macular degeneration in my left eye, which we are watching.

I am very pleased with the specialist and his office staff, assistants, and nurses. They are very caring and friendly.

Wet Macular Degeneration - OK for Now

by Bill
(Wiesbaden, Germany)

About 11 years ago the drusen were spotted with dire predictions. Two doctors later, I pressed for an estimate and one doctor said "two or three years."

I started taking ICaps vitamins and tried to put more greens in my diet.

Five years later horizontal lines on the computer were wavy, slightly, for the left eye only.

At the Frankfurt University hospital I was told they saw nothing but scar tissue.

Another four years and the waviness developed into grey spots. The diagnosis was not macular degeneration but some sort of retinal problem, at the same hospital.

Doubting the validity of this I went to Johns Hopkins and they immediately diagnosed it as wet macular degeneration and recommended Avastin injections for the left eye.

The first injection in San Francisco was pretty horrible. Maybe it was the shock, but the anesthetic was not done in steps. It felt like a big jolt of electricity.

Later, in Germany, at a new clinic, I received two more, but they were painless. Sitting in the waiting room, I received the numbing drops in stages and felt nothing when they performed the injection.

The night before the 4th injection, the grey spot started looking red around the edges. It was a hemorrhage. The grey area grew and got darker. One more injection was performed, but nothing since. We are waiting and watching. They claimed my condition has "stabilized." Whether the injections did any good I have no idea.

At Johns Hopkins I was told that I had a 95 percent chance of preserving my vision, and that if one eye gets AMD there was a 25 percent chanced of it going to the next eye.

At the moment my left eye has 25 percent visual acuity. The right has 100 percent (corrected).

There seems to be a disagreement whether there are drusen in the right eye or not. The brain actually compensates for the bad left eye, so it is almost normal.

At this point I am used to the fact that the left eye is useless for any specific vision task. I couldn't possibly read with it alone, or watch films or TV and definitely could not drive.

With peripheral vision that remains at least I could know were I am and navigate around familiar places, maybe even walk around downtown.

However, right now, I can drive, read, write, and navigate well. Sometimes, a few feet in front of me, I misjudge such things as pouring wine. But not if I am careful. It's a little shaky driving at night, especially in the rain. It just means I have to concentrate and be careful.

The big change would be if my right eye went bad.

On the whole, as I am 74, I feel the pressure of time to get things done, especially writing. I'm writing a kind of novel/memoir, and I feel some pressure of time.

A few other medical issues are also at hand. Suddenly it seems more realistic to take mortality into account.

But, since I have stopped feeling sorry for myself, daily life seems a lot more interesting than to pay attention to my difficulties, which, really now, are fairly minor.

And, even if they get worse, I have my other senses. People who are totally blind function in life very well.

I would say, you can live with this reasonably well. Adjustments are possible and life can be good.

BK

Wet Macular Degeneration.: A Big Wake Up Call

by Robbie Schaecken
(SYDNEY NSW Australia)

"I'm just trying to stop you from going blind" said my doctor as I baulked yet again at telling him just how out of control my Blood Sugars had become, as he organised a blood test.

I had been a Type 2 diabetic on insulin for 10 years then, and truly lost the plot with the routine I needed to follow, in order to stave off the complications that were inevitable, for as long as I possibly could.

That was 15 years ago now. So that makes it 25 years all up. I went to see the doctor with a small blank spot in one eye, and after the gamut of eye tests that they put you through, I was told that I had spots that needed zapping with a laser and that I would need some Avastin injections for Wet Macular Degeneration.

I was shell-shocked. How could this be happening to me? I had the laser first – not too bad. Then, the days clicked over to my first eye injection. Oh Man, I wanted to be anywhere but sitting there waiting to have an eye needle. I felt sick in the stomach; I wanted to throw up, run away. My heart was beating so fast and hard I could hear it in my head, and see it moving my chest.

Lots of anaesthetic drops later, and without even seeing the needle “a bit of pressure “ was what the doctor said and some “bubbles in the eye” IT was done. I felt like flying. All over? “Yes “ he said, “that’s it”. What a relief, now lets see if I can see well. “ This will take a while” he said “and a few more injections” I fell over at the thought of more injections and walked dejected from his clinic after a detailed explanation With another appointment in hand.

After a couple of days, I had a good talk to my self and decided that if that’s what it takes to save my sight, well that’s what I’ll do. So here I am on my 11th injection over a couple of years with a bit of ME time off as I was tired of the routine. The doctor is working very hard to save enough of my sight so as I can keep my drivers license.

I have a sense of humour about life now that I never recognized before. Maybe because I’m 66 years old, and my best friend and I have had many a good old belly laugh about my poor eyesight. She, having saved me a few times from falling down a gutter or two, saying " next time mix more water with it" as we head off LOL.

We were driving along a well known road she was the driver, as I wasn’t seeing well that day. I mentioned that I couldn’t see the sign hanging from the over hanging traffic light post, I said “ you know mate my eyes must be getting really bad because I cant see any of the writing on that sign” “oh” she said as we got closer “that’s because there’s nothing on it, it’s facing the other way” . We've dined out on that one.

Macular degeneration is no fun. Thankfully there are web sites like this one and so many great products, organizations, and people available to help us.

When I do lose my license and can’t drive anymore, and my eyesight is very poor. I’m not worried how I’ll cope.
I am concerned how the people I interact with will deal with my warped sense of humour about it.

Keep smiling people ( It makes the world wonder what you’ve been up to)

Ms. Robbie Schaecken

Wet Macular Degeneration Treatment and Me

by Arun
(Toronto)

I first had wet macular degeneration in my left eye six years ago and was treated with Visudyne and laser.

Unfortunately, the treatment did not save the central vision. Now my right eye is also affected and I have received Lucentis injections. They have helped me a lot. I keep my fingers crossed and maintain a positive outlook.

REPLY

Thanks Arun, for sharing with us your experiences with the different wet macular degeneration treatments. It is good to hear that the Lucentis injections are helping.

Six years ago Lucentis was not available. It was FDA approved in 2006. This anti-VEGF drug works by blocking VEGF. VEGF stands for vascular endothelial growth factor, a hormone that stimulates the growth of fragile and leaky blood vessels.

Wet macular degeneration is the result of the formation of new, fragile and leaky blood vessels growing under the retina. The growth of these new blood vessels is called angiogenesis.
VEGF is secreted by cells that are oxygen deprived and stimulate the growth of these abnormal blood vessels.

Lucentis works by blocking the growth of these tiny blood vessels that leak blood and fluid which then damages the photoreceptor cells in the retina.

Leslie Degner, RN, BSN

My Journey with Wet Macular Degeneration

by Anita
(London, England, UK)

I am a female aged 78 was teaching adults how to use computers till end of March 2011.

I was first diagnosed with wet macular degeneration in March 2011

I could see wavy instead of straight lines of text and objects - I also had blurring of text and objects too, which made working on computers a little hard to do ... I could see blue surrounding objects when I looked through that eye on its own.

I also felt that the eye was not really working, Fortunately the other eye is good so therefore I was still able to see.

I was started on Lucentis injections in April 2011 - and I am one of the fortunate ones.

After the 1st injection within a few days I could see text without it being wavy or blurred. The leaking veins had been sealed.

I have had 5 injections altogether and all the fluid has now gone after the last injection that I had in September.

I still cannot see any fluid and am due to return to hospital in November for a check up.

At present I am having good vision in the eye, and was told there was damage at the back of it, but it is hardly noticeable.

I do sometimes see lines on the right of pictures slightly wavy but am used to it now so it does not bother me.

The main thing is that I am still able to use my computer. It was a struggle whilst the eye was not so good - but now it is almost back to normal and I still cannot believe my good luck........ I am now hoping it lasts for the rest of my life - but who knows !

I do read your emails and the links thereon - thank you, they are very informative.

I do hope that everyone will eventually benefit from the treatment that is at hand and are lucky to have the same results that I have had.

My Journey of Indecision with Wet Macular Degeneration

While this could be considered my story with macular degeneration, it truly is more about the inconsistency in the medical profession, as well as their aggressiveness.

For the past 12 years I have been going to a very well known eye clinic in Miami, primarily for a lesion behind my right eye. As time went on, the young and very highly respected doctor decided that I was coming down with wet macular degeneration.

He ultimately decided that I needed an
Avstin injection, never telling me that I would be unable to see out of that eye for at least several hours.

I then found myself driving home for 150 miles with one eye through a bad rain storm. I was not happy.

The irony was, that when I went to see my local ophthalmologist, he admitted that I had some leakage issues, but none that needed any drastic measures.

I went back and forth between these two doctors for several years. The Miami doctor ultimately injected both eyes, and then about 18 months ago, after being checked for 20/20 vision in both eyes, he again said that he was going to inject both eyes because of wet AMD.

I calmly said: "I don't think so". I have never witnessed a doctor get so upset. He carried on like a baby that had just lost their favorite toy. He was quick to tell me that I was going to go blind if I did not follow his advice and to never return again for his diagnosis of anything. I calmly walked out.

I then put myself on a regiment of vision nutrients and returned to my local doctor every 3 months for over a year. Being quite satisfied with his test results, I now see him every 6 months. He always keeps saying: 'Whatever your doing, don't stop'.

I'm submitting this story for the benefit of all your readers. If at all possible, always get another opinion, especially from someone that has been practicing a very long time.

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