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Medical Forum / Diseases and Disorders / Glaucoma / April 2004Pigmentary Glaucoma
Hello everyone, I am a 47 year old male who was diagnosed with pigmentary glaucoma about 6 weeks ago. My pressures were 36 and 32 but dropped to 19 and 18 after a couple of weeks of using Xalatan once a day. My chart says I have dense pigmentation of the trabecular meshwork with advanced optic neuropathy. Cup to disk ratios are .9 and the visual field of my right eye has about half of it distorted by scotomas. My glaucoma specialist is very busy with patients in several rooms at once. He runs around amoungst them and spends as little time as possible. Asking questions get you an impatient, vague and ambiguous answer before he runs out of the room. Everything I've learned about glaucoma has come from on-line research and I've done quite a bit of it but I still have some questions. I am being treated with Xalatan alone but I feel the doctor is just treating the pressure symptoms and not the real cause which is the pigment release from the iris being rubbed by the zonules. I've read that Pilocarpine is the treatment of choice as the miotic effect may stop the reverse pupillary block and might even allow the trabecular meshwork to clear itself eventually. Did I read somewhere that Ocuserts are no longer available? My GS is only concentrating on lowering the IOP - I guess thats the only trick he knows. I am worried that lower pressure wont be enough to stop the visual field loss. He is trying to get my IOP down to 17 but I've read that the optic nerve head dies by the process of apoptosis and once it starts it might continue regardless of the lower pressure. Can Dr. Cohn or anyone else tell me if its realistic to expect my optic disk to stabilize, even after its already 90% gone? Is he the only GS in town? Sounds to me lkie you need to go to someone else. >My glaucoma specialist is very busy with patients in several rooms at >once. He runs around amoungst them and spends as little time as >possible. Asking questions get you an impatient, vague and ambiguous >answer before he runs out of the room. Everything I've learned about >glaucoma has come from on-line research and I've done quite a bit of >it but I still have some questions. Rick wrote: >Hello everyone, >I am a 47 year old male who was diagnosed with pigmentary glaucoma [quoted text clipped - 28 lines] >Can Dr. Cohn or anyone else tell me if its realistic to expect my >optic disk to stabilize, even after its already 90% gone?< Hi Rick, Up front, I'm a only a patient, so anything I say has no medical credentials behind it. although I have some familiarity with the kind of situation you are presenting. If your pressures were up to 38 and are now half that, in theory that would go a long way toward getting your "optic disk to stabilize." Re pilocarpine, with the scotomas and only 10% of your retina working, I suspect using it would constrict your pupils to the point that your vision was very unsatisfactory. Even a pressure of 17 might be a bit high for your eyes, so a lower target would not be surprising. Your specialist would appear to be quite right in focusing on pressure control at this point. I'm always interested in corneal thickness, especially in critical situations. If your corneas are thinner than normal, a measured pressure of 17 could indeed be too high. You don't say how your pressure was measured. Many think the Goldmann blue light applanation tonometer is the most accurate, so if that was used you could probably rely on it. Other types of instruments can give less accurate readings, considerably in some cases and with some people. Certainly a second, or third, opinion would be a reasonable step. Estimates of cup-to-disk ratios can vary widely between different physicians (for several reasons, such as the shape of the cup--round, elongated, or irregular, which various observers can interpret differently as they compare the cup to the disk). Hope this may help a bit and wish you a good outcome. > Rick wrote: > [quoted text clipped - 32 lines] > > Hi Rick, I've seen 10% of an optic nerve last for many years (at least the entire 8 yrs. I've been in practice plus many years in addition through which my older partner followed these folks). It is true, however, that many feel there is an apoptotic cascade of cell death that once started, cannot be haulted. Nevertheless, if it slows to a crawl, that may be the best we can do. Regarding your GS, find another...this one sounds like a piece of work! I had a new patient today with pigmentary glaucoma who I spent a full 30 minutes with (fortunately she was my last patient of the day) until I had her every question answered (and she was a lawyer in for a 3rd opinion carrying a long list of questions). You won't get that treatment from everyone, but you should never leave feeling like you visit was a burden to your doc. By the way, we ALL have several rooms going at once...you're just not supposed to make the patient FEEL like you need to rush to the next one! Mr. Halter made some very valid points here...1) Pilocarpine is a lousy drug for many reasons...a) frequent dosing (and it is true that you won't find Ocuserts anymore)---at least 3-4 times per day...b) pupillary miosis (small pupils) can frequently dim your vision and will make cataract surgery very difficult years down the road when you need it...c) makes dilation difficult after chronic use so that computerized optic nerve head analysis will not be done easily, and d) may worsen results on visual field testing. 2) An IOP of 17 may not be low enough. Studies show that with advanced optic nerve damage, an IOP below 17 might be preferable. If I were him I would probably add a second drop to your regimen. 3) Your corneal thickness would be quite useful to know in helping to be certain that the IOP measured is actually what's going on inside your eye. If your cornea is thin, the pressure in your eyes may be higher than what is measured by applanation (flattening your cornea) Don't lose hope! Glaucoma is usually a very slow moving process in most individuals, especially if you get that IOP nice and low. This should have been picked up much sooner in your case. Remind your friends who haven't been for an eye exam in years that glaucoma is a silent disease and can only be picked up on a good complete eye exam! Good luck to you...write back with any more questions or email me directly. --Rick Cohn, MD Glaucoma Specialist Winter Park, FL Okay, we all make mistakes...when I wrote: Studies show that with advanced optic nerve damage, an IOP below 17 might be preferable. I meant to say below 14...that's the magic number...sorry guys. --Dr. Cohn > Okay, we all make mistakes...when I wrote: > [quoted text clipped - 3 lines] > I meant to say below 14...that's the magic number...sorry guys. > --Dr. Cohn Thank you for taking the time to answer my questions. I am a lot more optimistic about my near future now than I was last week. Everyone seems to agree that I need to find a new Glaucoma Specialist. I've been healthy all my life and I don't have much experience with doctors I don't even have a GP. So my first question is how do I find a good GS? I was told the one I have now is "the best". Supposedly he teaches at SF General and he's the one my optometrist would want if he had glaucoma. Maybe I should just continue getting my questions answered elsewhere and have him treat me if he is so good. But how do I verify that he is good? Is there some medical association site that rates doctors on their success record or some other criteria? You know the old joke about "what do they call the guy who graduated med school at the bottom of his class? Answer: they call him DOCTOR." Well, how do I know that's not the person I'm getting if I just pick one out of the phonebook? I found a listing of local members from the American Glaucoma Society, would that be an indication of competence? How would I know if the specialist I chose was the absolute worst one around as far as being able to help me save my sight? I agree that an IOP of 14 or lower would be much better that the target of 17 that my current GS is aiming for. He wanted me to return in 2 months for a pachymetry test to measure the thickness of my corneas. Unless it turns out that I have extra-thick corneas with lower pressure than the 19 & 18 I'm showing now, then I may ask about a second medication. Maybe Alphagan? I do recall him mentioning that he would want to do an ALT if he was unable to get my IOP below target value with 2 meds. He claims each ALT would be good for 3 to 5 years. I was dubious because I've read about many people whose ALT didn't help at all or only helped for a very short time (a month or less). I also know that even a successful' ALT would have a hard time lasting 5 years for the first one and the second rarely lasts as long as the first. I am wondering if an SLT might not be a better way to go. There seems to be some advantages in SLT over ALT including the ability to have an ALT even after the SLT is no longer effective. Any comments? Do people with pigmentary glaucoma ever get better? I thought that the pigment dispersion was a phase that eased as the eye ages and accommodation is lost. Is there hope that my trabecular meshwork will ever clear itself if pressure control is able to stabilize my optic nerve long enough? My GS says its not likely. If the dispersion does stop with age, what is the age of patients that have improved? I want to thank you again for taking the time to help me. The responses I've received here are wonderful and just what I needed. I was billed for the consultation' by my GS but I didn't get much more than test results without explanation. The fact that you care really shows. Thank you. <snip> > Everyone seems to agree that I need to find a new Glaucoma > Specialist. [quoted text clipped - 14 lines] > specialist I chose was the absolute worst one around as far as being > able to help me save my sight? My glauc doc was recommended to me by my trusted ophth. I don't know if the specialists on glaucomaweb are all "the best" but they *are* specialists in glaucoma. The Glaucoma Research Foundation is based in San Francisco (http://www.glaucoma.org/). You could contact them for a referral. Their phone number is toll-free (800) 826-6693 or(415) 986-3162. Chris Saleh is starting a support group in the Bay area. If you go to http://www.gsgd.org and put in his last name as a search paramenter, you'll find the listing with his email address and phone number. Good luck! Sherry Thanks Sherry for this Glaucoma site --Looks like a keeper ! Well, I'm not the most qualified person to answer all your questions. But I've been to enough doctors to know the "hot shots" aren't always the best. I wonder if your GS has taken on more responsibility than he can handle adequately, and it's affecting his performance and disposition. A great reputation is great to have, and you do want a certain amount of experience. But sometimes a talented younger doctor deserves a chance, too. I don't know how old my own GS is, but he looks like a kid, and just opened his own practice a year or two ago. I'd guess no more than early 40's, if that. But I think it'd be hard to find anyone better. I came to him because, when I was first diagnosed with glaucoma, I was going to a well-respected eye clinic, and he was working there. My primary eye doctor wanted me to go to him, even after he left. At any rate, you should have a doctor who treats you right, takes time to answer your questions, and earns your confidence in his competence. I'd continue looking for referrals, especially from other people with glaucoma. Also, do you have any respected eye clinics in your area? Or other teaching hospitals? Such places will have several heads to put together to come up with a solution. Laura >Everyone seems to agree that I need to find a new Glaucoma Specialist. > I've been healthy all my life and I don't have much experience with [quoted text clipped - 4 lines] >my questions answered elsewhere and have him treat me if he is so >good. But how do I verify that he is good? Is there some medical > > Okay, we all make mistakes...when I wrote: > > [quoted text clipped - 56 lines] > shows. > Thank you. Rick, I did my glaucoma fellowship in San Francisco. If you email me and tell me who you see, I'll tell you if I know him (and also tell you who to see). Probably should discuss this in private. email me. Take care, Rick Cohn, MD (eyeguyrc@aol.com) |
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