Macular Degeneration?

Question

I have just been dignoses with this condition and have read a lot about it , but one piece of information I have not been given is how long before I will not be able to read, will it be a year 5 years 10 years??

Answer 1

Ah, a question that is right up my alley. I'am an RN for five retinal specialists and have spent the last ten years working with patients with macular degeneration. First off, you never said if you were told if it was wet macular degeneration or dry, there is a significant difference. The dry progresses much slower and with a good diet, good eye vitamins (VitEyes, Occuvite) avoiding tobacco and regular checkups, the dry form does relatively well over a long period of time. In fact, in my office we send a patient home and say get an every six month exam by your general opthalmologist or optometrist and call us if you need us! It is however, the wet form that needs attention and yes if not caught early and treated, vision can deteriorate very rapidly. Luckily, no patient with the wet form will be left untreated.The wet form of macular degeneration is where the actual bleeding and leakage of the abnormal vessels causes a central vision loss with surronding distortion. Do you have an Amsler Grid at home? If your condition is currently the dry form, using the amsler grid at home checking for an indication of distortion is a good way to see if your condition is morphed to wet, (also good for checking the progression of an already wet form). As far as treatments go, when I first started in this field we had just begun with a treatment called PDT- photo dynamic therapy where a drug called Visudyne is injected through a vein in the arm where it travels to the back of those abnormal vessels, latches on and then occludes the vessels when the laser light shines on them for precisely 83 seconds. I would do nearly 50 of these a day. This treatment was all we had at the time for the wet form as many years ago, people found out the hard way that doing a heat therapy laser will simply burn the macula of those with wet macular degeneration and cause a huge irreversible scarring in the central vision. Then came a drug called Macugen which in the state I live in did not last long. Following that are two drugs we currently use called Intravitreal Avastin and Lucentis. As the PDT had a rate of keeping the progression of the disease stable, these two new drugs were the first where we actually saw improvement in the vision. Then our doctors began trying one of the injected drugs in combination with either dexamethasone called Avastin Dex along with the PDT and the combination has truly been remarkable. In fact a good friend of mine that received the combination called the following two weeks to say his vision was one hundred percent back to where it was! So while I understand this may sound as if your vision will proceed to impending blindness, this is simply not the case. Find a retinal specialist, if you smoke-quit, take your eye vitamins, be very cautious in any decrease in vision or distortion because while medicine has made a huge leap in the treatments for this disease, if severe vision is lost, not even Avastin or Lucentis may be able to bring all of it back. So the sooner caught, the better. Stay positive and feel free to email me, thirty years ago I would have said in ten years you will be legally blind. These days, with the wonderful treatments available and the strides we have made, there is no grim outcome for you. We have patients who have had it for longer than ten years and continue to read and drive. Good luck, hope it helped.

Answer 2

You WILL be able to read no matter what. Now is the time to start seeing and communicating with a special doctor called a 'low vision specialist' who will fit you with devices, like ultra-strong reading glasses, magnifiers, and eventually a 'closed circuit television' or a tv mounted on a camera that magnifies- even in the greatest level of progression one can expect with macular degeneration, most people can use a CCTV. If, because of eyestrain or other problems, you cannot read print, learning braille or using talking books is also going to be an option.

Long story short: macular degeneration sucks. We know. But you'll be able to live with it, I promise. Just find yourself the support of understanding doctors and social support within the blind community.

Answer 3

Unfortunately, no one here can really say with any certainty. The doctor who is watching you for this condition would be the best to offer his opinion. I hope it takes forever for you, that is one of the most frustrating things to happen to someones eyes as there is no cure. There is a procedure now where they insert a needle directly into the eye to slow the progression of macular degeneration. If the doctor you see is not a  specialist in this area please ask for a referral to one.

Answer 4

I have this disease. Had it for years, since 94 and I suspect, a lot longer. Get a good retina specialist who is aware of every treatment option. The important thing is to treat early, as soon as you notice change. The treatments now are much more effective now than when I first leanrned of this. get the Lucentis shot or the acugen. I had Avastin and that worked for me. Also prayer. Pray pray pray. I still read ( 3 pairs of reading glasses) and drive. I refuse to give up!!