NATHALIE: My mother has wet in one eye and dry in the other--now beginning to deteriorate badly (blurring, not distortion). I took her to the Jewish General in Montreal, where, after another angiogram, they said she has occult leakage--not classic--in the dry eye, that may or may not be stable for months or years. After reading your comments, I suddenly realize that perhaps Visudyne may work for this occult leak. What should I do? Should she go and see Dr Harding in Liverpool again? (I took her there two years ago.) Should we risk trying microacupuncture in Scandinavia? I sometimes feel desperate at not being able to grasp all the intricacies of the diagnoses. I know there is no miracle but anything to stop the deterioration would be worth it.

DR. SONKIN: Occult CNV comes in several forms and can vary greatly from patient to patient. There are new treatments that have recently been shown to help occult leakage, but not all affected eyes are candidates. Given that your mother has not seen the retina doctor in two years, I do recommend that she be checked. Even if things are stable and no treatment is needed, two years is much too long between appointments. Certainly, if your mother notices any changes in her vision, she should be seen immediately. With regards to the acupuncture, I really don't have any information on it. I usually only recommend therapies with good scientific evidence of efficacy, but, at the same time, I am aware that there can be alternative treatments that sometimes can provide some help, even if it is only emotional help. Good luck.

NORMA: I have two questions for you:

1. I have wet MD (bad eye 20/400, good eye 20/25 and holding) and was fortunate that leaking in the good eye was spotted and lasered by my retinologist, Dr Charles Weldon. I now have chronic open angle glaucoma and my question to you is will that compromise my existing condition?

2. My husband has developed dry md and will be followed by my retinologist. Are there any precautions we can take for my husband? He has a diet high in fruits and vegetables and avoids direct sunlight.

DR. SONKIN: Glaucoma has not been shown, to my knowledge, to directly affect macular degeneration. The one point I would make is that advanced glaucoma causes loss of peripheral vision, which is not a good combination with advanced macular degeneration and poor central vision. Keep up with your appointments and medicines, and hopefully the glaucoma will never progress.

It sounds like your husband is doing the right things. Make sure he monitors an Amsler grid at home and maintains regular dilated eye exams.

ROSIE: Thank you for your explanations to my previous questions. Could you provide some additional information?

1. To my question #1, you replied that this is a "clinical decision." What does this mean?

2. To my question #5 about correcting myopia, you replied that correction may not be possible if there is functional damage to the retina or underlying tissues. What is the technical term for this medical condition, and what usually is the prognosis?

DR. SONKIN: When I stated that it is a "clinical decision", what I meant was that sometimes the appearance of an abnormality cannot be labeled as a specific disease, rather it "looks most like" a certain diagnosis, and it is, therefore, a clinical decision made by the examining doctor as to what he or she feels is the most likely diagnosis. This is based on the clinical appearance on exam, the symptoms, the history, and ancillary test (such as FA, etc.) Medicine is not always a 100% science, and this is where clinical experience and good training is important.

Regarding your second question, functional damage from myopia can be termed degenerative myopia. I was not stating that this is what I think you have. You asked why myopia can't be corrected with glasses. Degenerative changes in the macula from the myopia is just one possible explanation. Myopia can also cause small hemorrhages in the macula, and this can leave some damage even after resolution of the blood. Again, in your case it might be due to the old macular hole, AMD, etc. Only your examining doctor can provide information specific to your eyes.

TESS: I was diagnosed with Stargardt's disease fourteen years ago. Although there has been the expected deterioration in my eyesight, over the past 4-5 years I have also noticed brightly coloured spots in my central field of vision. They are always neon purple and neon yellow combinations. However, the patterns, shapes, and sizes differ slightly.

The spots are not there all the time, but they do tend to occur more often when I am tired or stressed. Are they related to Stagardt's in any way or are they more to do with stress? Do these spots mean that my eyesight is deteriorating more rapidly? Is there anything I can do to get rid of them or to avoid getting them?

DR. SONKIN: Your symptoms can be due to many different things, and I would recommend that you discuss it with your retina doctor. Stargardt's and other macular diseases can cause varying symptoms, and may explain what you are noticing, but it is important to rule-out other things. It may be changes in the vitreous or other parts of the eye. Sorry I can't be of more help, but to answer your question reliably really requires an examination.

A note to everyone: I am enjoying all of your questions and discussions. You have a wonderful group, and I am also learning a lot and expanding my perspective on retinal disease. I want to emphasize one important point. Nothing replaces the actual retinal examination. My comments are based solely on your questions and statements. I am not able to examine your eyes, and I would, therefore, definitely defer your treatment decisions to your examining retina doctor. Your questions have been excellent and very detailed, and I hope my answers have not been too vague. Hopefully the information I am providing does help answer some of your questions, and I hope it is also helping to broaden your individual knowledge of macular degeneration and other retinal diseases. I look forward to continued discussions.

BETTE: My major problem now is job hunting with this MD. I have applied for disability, but do not think I will get it. Despite failing my state drivers test, the low-vision doctor gave me a license with no restrictions. I am trying to see about going to school to do medical transcription, as I will need to do something from home. Will I be able to do this? Is this unrealistic?

MAGGIE: I read your question to Dr. Sonkin and identified with your concerns about retraining in order to remain self-supporting. I. . . went through a period where I was terribly worried about how I would continue to make an income. . . After agonizing for a year or more, I came to the conclusion that nobody could really tell me what was going to happen with my sight. I just had to keep the faith and carry on. So far, I am able to do my old job. . . I think the best thing we can do is to move ahead with our plans, instead of letting the "what ifs" paralyze us. Why not retrain and look forward to a new career? Worry about changes in your vision only if they occur. In the meantime, go with the existing situation and make the most of it. I think all of us have to bear in mind that we have sight problems that could force us, eventually, to make some very difficult life decisions. I am trying to cover all the bases, in the event that I have to find a different sort of work. I don't know how things will work out, when and if something really bad happens. Right now, I can cope, and that is what matters.

You remind me of myself two years ago, when I first joined this list. I felt that I had to know "how long", "how bad," etc., and no one could tell me. Many people on the list told me that things would work out and they were right. They will sort out for you, too, so don't worry. Just be as confident as possible, and retrain in good faith that you will have many productive years at your new job.

DR. SONKIN: I don't think I can add much to Maggie's comments. I agree with everything she said. I do have many patients with very reduced vision that work and go to school, usually with the assist of low vision aids. Reading and using the computer will not make your AMD worse. "Straining" your eyes has never been shown to have any impact on the progression of macular degeneration.

MAGGIE: Recently, I made an inquiry in which I mentioned I have been diagnosed with angioid streaks. In comparison with MD, how common is this condition? My streaks have been confirmed as idiopathic.

DR. SONKIN: Angioid streaks are much less common than AMD. AMD is the leading cause of legal blindness in the USA for patients over 50. I see numerous patients every day with AMD, and probably five to ten patients with angioid streaks per year.

IRVING: Do you have any thoughts on the role of stress in illness, and any suggestions for dealing with stress.

DR. SONKIN: There is no easy way to cope with stress of any form. The best start is realizing that it exists, trying to understand the source of the stress, and going from there. Groups like this site provide incredible support. With regards to the effect of stress on AMD, to my knowledge there are no studies that have supported a relationship. I believe that stress does have an effect on our bodies and all of our systems, but to what degree I don't know. When I am particulary stressed, I seem to get more colds, and I am much more tired. I would think stress would also have an affect on chronic conditions, but to what degree is uncertain.

ALICE: Do you have any information on using a sclera buckle to reinforce an eye that has Myopic MD? I have only read about this reinforcement when the retina has already detached.

DR. SONKIN: A scleral buckle should only be used when the retina is detached. There is no other approved indication for that kind of surgery, to my knowledge. If you are told otherwise, I would be interested in knowing more. We do sometimes place a scleral buckle after severe trauma if we are doing a vitrectomy at the same time.

ALICE: my retina specialist has been doing the sclera buckle procedure for over ten years. He has been to Russia to oversee the procedure there. I think they use synthetic sclera.

I have myopic MD, so the eyes are elongated, but in addition I have these bulges. It is hard to get a correct measurement. I believe normal length is 21. Mine is 27 or so. My RS has been recommending the sclera buckle for me. He told me that the procedure does not prevent further damage, but slows down the progress of the disease.

DR. SONKIN: In severe myopia, you can sometimes get severe scleral thinning and an outpoutching known as a staphyloma. If this is so severe that there is a risk of extrusion of intraocular tissue, sometimes we support the staphyloma (thinned sclera) with fresh scleral graft tissue. This is not the same thing as a scleral buckle, though. Myopia-related degeneration of the macula is also a completely different issue, and I am not familiar with any scientific evidence that a scleral buckle helps with this. I may be wrong, and there may be studies that support this. I personally do not have any experience with this, nor do I know any other retina surgeons that perform scleral buckles for this reason. I would talk with your retina surgeon further.

ERV: I have dry (20/20) in my left eye and wet occult (20/800) in my right, with glaucoma and cataracts in both eyes and a macular hole in the wet eye. I converted to wet in the right eye last year. I understand that PDT is now available for occult MD and would appreciate your thoughts about treatment possibilities in general and related considerations. Is help available in any form for scar tissue?

DR. SONKIN: Your situation is a difficult one. Both the macular hole and the wet occult AMD can result in significant loss of the central vision. It is a clinical decision between your doctor and you as to whether or not the risks and benefits of macular hole surgery and/or PDT treament weigh in your favor. Surgery for macular holes is very successful (approx 90% closure rate), and laser for CNVM is moderately successful. When both coexist, there is no way to predict either anatomic success or potential for visual improvement. Good luck.

CLAUDIA: My dad (88) went to see his opthm (not RS) today for a checkup. The doctor detects a new macula bleed, but says let's just wait a couple of months and look at it again in January. When he told me this I LOST IT. Now did I overreact? He has minimal vision left. It just seemed very cavalier and sloppy to me to wait and see. Feedback please?!

DR. HENSIL: I agree that the doc didn't explain things well and his bedside manner needs a little help. This doesn't mean he is wrong. A "new bleed" just means there is some blood in the macula, a small hemorrhage. This does not necessarily mean that there is new neovascularization there, and it is only neovascularization (new and leaky blood vessels that are not supposed to be there) that is treatable with laser, and sometimes even that is not treatable. The blood, depending on how much there is, can cover the RS view of what is going on underneath it, and until some of that blood resolves (which can take a couple months) it may be impossible for him to make an assessment of the situation.

With regard to vision, the worst that any person with MD alone will see is about 20/200 (give or take a little) as that is what the peripheral visual acuity is. Every patient I have with MD reads the newspaper, many work or volunteer, all take care of themselves (except those in nursing homes for other reasons), etc. I strongly suggest a low vision evaluation for your dad, as there is no reason that any of his visual goals can not be met. Of all the eye diseases out there, MD is one of the 'best' to get as you never go completely blind and there is always a lot of vision left to work with (again, unless there is other disease like glaucoma, cataracts, etc. present).

DR. SONKIN: I would like to add one comment. In the past, if a macular hemorrhage was extensive enough to obscure the view of the underlying pathology, then it was true that we had to wait until the blood cleared before considering laser treatment. This was often not very satisfying, because sometimes the blood doesn't clear, and sometimes the underlying pathology progresses and results in permanent damage, while we wait for the blood to clear.

Fortunately, we now have surgical options to move the blood to hopefully improve vision and allow for laser treatment if indicated. One of my partners developed a novel approach to this, in which we perform a vitrectomy, place a blood thinner under the retina to dissolve any clotted blood, and then place a gas bubble in the eye to displace the blood from the macula. I have had several successful patients in which the vision improved after I performed this procedure, and I was able to treat the CNVM (abnormal blood vessels that caused the hemorrhage), hopefully preventing additional bleeding in the future.

DR. HENSIL: Wouldn't this cause a fairly decent rate of retinal detachment? Is it worth risking a retinal detachment in someone who already lost all their central vision and functionally has little to gain from such a procedure?

DR. SONKIN: That is an excellent question. What I describe is a fairly straightforward procedure that is technically not difficult. The subretinal injection of TPA and the gas-fluid exchange does not add much risk over the core vitrectomy. I would estimate the risk of retinal detachment after a procedure such as this to be less than 5 percent. This still must be considered when weighing the risks/benefits, in addition to the risk of infection, bleeding, etc., and I discuss this in detail with the patient and family. We also consider the condition of the fellow eye, the patient's overall health, etc. The procedure is outpatient and done with a local, so there is little systemic risk.

SHARON: What are the contraindications to the health of a patient or their eyes by repeated fluoroscein and ICG angiography? I recognize the possibility of allergic reactions, but what about causing damage to the vessels of the eye or the kidney or liver? Are there other concerns?

DR. SONKIN: I do not know of any association between repeated angiograms and damage to the retinal circulation (or other vascular beds). In patients with reduced kidney function, elimination of fluorescein from the body takes longer, and sometimes I will use a reduced dose.

KAY: About three weeks after cataract surgery, I started seeing a purple image in the form of a duck, which would come and go. My doctor sent me to a retina specialist, who told me I had dry MD in both eyes. I was on steroid drops five weeks after the surgery. When I quit taking them, the purple image stopped, and I have not seen it or anything else. I really don't believe the RS and am in the process of getting copies of my records and pictures. My vision is great. In fact, I was driving without glasses, only needing them for reading before surgery. On the Amsler grid I see no wavy lines or blank spots. It is a puzzle to me.

DAN: Kay, there is substantial evidence that steroids can lead to a form of retinal degeneration called central serous retinopathy (CSR). This is a condition of the macula which can be temporary, and it can be misdiagnosed by doctors who are not familiar with it. You are fortunate that your condition reversed after you stopped taking the drug.

DR. SONKIN: CSR can be slightly difficult to diagnose, but most retina surgeons can easily distinguish it from other conditions by clinical exam and flourescein angiogram. Steroids can make this condition worse, but usually do not cause CSR. It is an idiopathic condition, which means there is no cause (just bad luck).

DAN: There has been a quantity of recent research which has concluded that corticosteroids (glucocorticoids) administered systemically can actually induce CSR, in addition to increasing the morbidity of the disease. I based my reply to Kay upon these reports, a few of which are listed at the end of this message, and I welcome any more insight that you might have. {Note: The research reports are not listed in this transcript for reasons of space.]

I had the unfortunate experience of being misdiagnosed for 18 months, during which time my ophthalmologist (not an RS) administered a subtenon injection of steroids, after which my blind spots doubled in size within 24 hours. I sought a second opinion from Dr. Lawrence Yannuzzi in NYC, who immediately diagnosed my condition as CSR. Sadly, there are doctors who still do not recognize the disease, and--even worse--are still not aware of the danger of steroid use in connection with it. I only wish I had first met one who was.

DR. SONKIN: Your experience is unfortunately an example of what I feel is the most important thing in medicine, not just ophthalmology. One of the most critical aspects of caring for patients is "knowing what you don't know," and seeking other opinions and help when necessary. Unfortunately, even the best doctors (in many different fields) with the best intentions sometimes fail to refer when needed.

Additionally, I am very familiar with some of the articles you referenced regarding the association between steroids and CSR. My previous comment was meant to reference the clinical application of this knowledge. It is well known that steroids can aggravate an existing and active CSR leak, and I certainly avoid steroid use in patients with CSR. I do not know of any physicians that would avoid steroid use because of the small risk of precipitating CSR, nor would I discuss this as a risk if prescribing steroids. No studies have looked prospectively at this risk, and most of the cases occur in patients with underlying macular pathology and possibly prior CSR episodes. The average CSR patient has 3 to 5 recurrences over their lifetime. I also do not believe any studies have compared the incidence of CSR in the general population to the incidence in patients treated with steroids, but I may be wrong. This would be very difficult to do anyway, because many CSR cases are asymptomatic if not involving the fovea, and most improve and resolve without treatment.

One last point: literature searches can turn up an association between almost any two entities, particularly medical diagnoses and drug use. How one uses this information clinically can be very difficult, and all things must be considered when weighing the risk/benefit ratio of any surgery or therapy. Thanks for the discussion. I am enjoying the interaction, and I am learning a lot myself. I hope my comments have been helpful so far.

DAN: I agree with everything you said. I hope that Kay has been accurately diagnosed, but if it turns out to be an episode of CSR, it is probably good that she is no longer taking the drug.

You are correct about the pausity of research in this area. It does not generate a lot of interest, due to the relatively small population which is permanently affected by chronic, progressive CSR (my situation), but I hope more study will eventually be initiated.

Thank you for providing your insight into this subject. You are proving to be one of the best guests we have had so far, and I look forward to hearing more from you during these next few days.

CATHIE: When I was 11 (a year after my central vision started to decrease), I was given mega doses of cortisone. It didn't stop or correct the decreasing vision, so that was stopped. I have occasionally wondered what the long term effects were from taking that medication at my young age. Could it have contributed to the vision loss?

DAN: Cortisone has been named in the research as an inducer of central serous retinopathy. It has not, however, been connected with age-related macular degeneration, juvenile macular degeneration, or choroidal neovascularization. For that matter, it is still considered by many as a treatment for those diseases.

ANGELA: I have emphysema and use a steroid inhaler, Pulmacort. Also, at times I have used a steroid medication in a nebulizer. Should I be concerned about using these medications relative to my AMD? I have dry AMD and cataracts in both eyes.

DR. SONKIN: Although steroids have several side effects, regardless of the administration route (topical, oral, sprays, etc.), I know of no definitive evidence that they have any effect (either positive or negative) on macular degeneration. Some studies are actually underway investigating intraocular steroids for the prevention of wet AMD based on initial basic science studies.

MARTHA: 1. My glaucoma specialist tells me that I will probably never lose my peripheral vision to glaucoma as long as I keep watching it and medicating. I see him every three months, and use Timoptic drops each morning. The pressures stay good. May I assume that I probably won't lose my peripheral vision?

2. What is your opinion about cataract operations for those of us with wet MD?

DR. SONKIN: Great questions! With regards to your glaucoma, I would defer discussion of your particular longterm prognosis to your personal doctor who knows your eyes. In general, though, early detection and appropriate therapy is very very effective at preventing peripheral visual loss. In my patients with cataracts and macular degeneration, I try to explain that it is sometimes difficult to determine how much of the visual loss is from the cataract and how much from the macular changes. Cataract surgery is probably just as safe for patients with macular degeneration as it is for those without AMD, but the visual prognosis is more guarded. I do have some patients that have developed wet AMD after cataract surgery, and this has been suggested to be a risk by some reports in the literature, but it has not been proven. My advice would be to discuss it carefully with the cataract doctor and retina doctor, and carefully weigh the risks and benefits. I also always tell my patients it is ok to wait on the cataract surgery, particulary if they are getting along reasonably well.

DOROTHY: I began developing sight problems over two years ago. I have macular pucker in my left eye and dry MD in both eyes, along with some drusen. I eagerly asked my doctor to operate on the macular pucker, and fix the problem in my left eye, (my worst eye) and he said "no," because of dry MD existing!

I went to another RS for a 2nd opinion. She said, "On the angiogram, it looks like it is less likely to be MD predominently in your left eye and more likely to be an actual cyst. It could be a fovial cyst. There is no treatment for that, but they tend to not progress. We will have to hope for that."

Shall I seek a 3rd opinion? Why does dry MD make it impossible to operate when one has macular pucker?

DR. SONKIN: It is okay to operate on macular pucker in the presence of dry AMD if it is felt that the pucker is the larger problem. Cysts in the macula can be due to a variety of problems. The pucker can cause a cyst. Prior cataract surgery can cause a cyst. Wet AMD can cause cysts. Retinal vascular occlusions can cause cysts. I usually try to treat the cyst with drops or subtenons kenalog injections. If the cyst is due to a pucker, it usually does not improve much without surgery, but surgery for a pucker can be difficult in the presence of a cyst, because of the risk of unroofing the cyst and forming lamellar holes. A typical pucker without cyst is a straightforward surgery.

GIDEON: Regarding PDT, you said, "It usually takes multiple treatment sessions." From one to how many known, during what duration?

You also said, "Wet AMD not treated can smolder for a long time, but the duration varies greatly." What is known statistically (if at all recorded) regarding the duration?

DR. SONKIN: There are specific numbers quoted in the PDT studies, but on average patients require three to four treatments in the first year and approximately two treatments in the second year. This varies greatly from patient to patient. There is no data, to my knowledge, regarding retreatment rates outside of the first two years.

With regards to the natural duration of a bleed or leak from wet AMD, there is no way to predict how long active leakage and bleeding will persist before scarring sets in. In my experience, fibrosis and scarring usually would set in after six to eight months, but that was what I saw as a resident and fellow before PDT treatment was available and when we sometimes only observed. Hopefully, there will be fewer patients with disciform scars (macular scarring) now that we have PDT.

GREET: I have been treated for allergic rhinitis in recent years with nasal sprays containing cortisone (such as nasacort, et al), and I always felt that the sprays increased my eye problems. Could this be so, or am I just casting around for an explanation?

DR. SONKIN: Neither AMD nor cataract surgery are associated with symptoms such as yours. The nasal spray is also unlikely to be the cause. I am not calling you old, but normal aging of the meibomian glands, eyelid structures, and the cornea, conjunctiva, etc. often result in symptoms such as yours. Seasonal changes can also cause your symptoms, as well as your allergies. I would recommend you see a cornea/external disease specialist. I have not studied these diseases since I was a resident, and my expertise lies elsewhere. Sorry I can't help more.

KAY: Please explain the disease, central serous retinopathy (CSR).

DR. SONKIN: This is an idiopathic retinal condition in which an abnormality of the RPE (supportive layer under the retina) allows fluid to leak under the retina, causing a serous detachment of the retina. When this fluid involves the fovea there is a decrease in central vision. Fortunately, this condition is usually self-limiting and it resolves on its own. Sometimes we help expedite resolution with some laser treatment. This is indicated only in certain situations, e.g. nonclearing fluid, poor vision in fellow eye from CSR, occupational needs, etc. Unfortunately, there are some cases where CSR causes a permanent reduction in vision. Additionally, CSR often leaves RPE atrophy in the area of leakage, and this can, in rare cases, result in growth of CNV (abnormal blood vessels) much like those of wet AMD.

MARY: Is there any way to correctly diagnose cone dystrophy? My RS is pretty sure that is what I have, but another one in another state disagrees. They don't do ERGs here, but I was wondering if that could tell the difference between a cone dystrophy and early onset MD. They say it is either cone dystrophy, or cone/rod dystrophy. Anyway to tell for sure?

DR. SONKIN: The ERG is the gold standard for diagnosing cone dystrophy. Cone dystrophy and cone/rod dystrophy are really the same thing, with minimal difference. Both are photoreceptor degenerations, and are often "lumped" together.