When I spoke with my sister, she reminded me of her husband's brother, an opthamologist in Georgia... I emailed him and he promptly emailed me back... he gave me very good information about possible treatments and he, too, reiterated how critical it was not to delay treatment. He also suggested I get a second opinion. He suggested the Jules Stein Institute at UCLA. I made an appointment and, after a lengthy exam, my diagnosis was confirmed.
Treatments for macular degeneration depend on whether the disease is in its early stage or dry form or more advanced, wet form that can lead to serious vision loss. There is no treatment for dry MD, although it's been proven that the use of vitamins and zinc do slow it down. There are many on the market, but I chose I-Caps' AREDS (for Age Related Eye Disease Study) Formula. It is the same as was used in the study proving efficiency. I've also learned that dark leafy vegetables and lutein are beneficial.
In wet macular degeneration, new abnormal blood vessels behind the retina begin forming at a rapid rate. These vessels begin to leak blood and fluid, causing damage to the macula, the region of the retina responsible for central vision. Treatments aimed at stopping this include injections of drugs like Macugen or Avantis and, Visudyne used with Photodynamic Therapy or PDT. Recently, a new drug, Lucentis, has been approved by the FDA specifically for WMD. Laser treatment is aimed at minimizing the loss of vision but it does leave a permanent e "blind spot". Even with treatment, vision may continue to decline.
The most alarming information I found was that Genetech, a drug company, manufactures both Avantis and Lucentis. Avantis is a drug used to treat colon and other kinds of cancer, however, it has an "off label" use for treating WMD. It costs about $100. a shot. Lucentis, which is packaged in small doses and is pretty much the same as Avantis costs about $2,000. per shot... Guess which one Genetech chose to seek FDA approval for...
For my own treatment I decided to try Avantis. My hope was that it would stop and even reduce the current damage to the macula and follow up with laser to hopefully keep the damage contained for as long as possible.
Getting a shot in the eye was psychologically dificult for me, although physically, it wasn't anywhere as bad as I had imagined. It was scary. I was glad my daughter had taken time off to accompany me, as she held my hand during the procedure.
Two weeks after the shot, my vision had improved slightly. The "dark" shadow wasn't as dark, the area wasn't as big. The doctor's exam confirmed the improvement.
At the time, I faced the choice of going for the laser treatment or waiting further. Even though my doctor favored the laser, he supported my decision to wait and see if there was continued improvement, reminding me again that there could be leakeage and complete vision loss at any time.
That was 3 weeks ago. My next appointment is in two weeks. My vision seems to continue to improve ever so slightly. I check myself every day with an Amsler grid on the internet... a series of lines with a dot in the middle. When one stares at the dot, any distortion in the lines tells me how my vision is doing.
If at any point I see that the distortion and darkness gets worse, I'll contact my doctor immediately.
In the meantime, I continue to take my vitamins, I make sure to wear protective sunglasses when I go out, even on overcast days, and keep including dark leafy greens in my everyday diet.
As nervous and scared as I was when this first happened, I have come to terms with it. I guess if I hadn't had other crises in my life, this would be a tragedy... as it is, it's only another glitch.
I believe strongly that everything happens for a reason, and for the best of reasons. So, somewhere in this there is a golden nugget of wisdom or serendipity, for me or someone else.
My next posting will be after the upcoming eye exam. If there's been more improvement should I continue to give it time or cut my losses with the laser (no pun intended). I am not making up my mind in advance, however, I do know I am a risk taker at heart...


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