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My glaucoma experience

Question:

Earl, Many Thanks for taking the time to share so much information and your experiences. I was especially interested in your very positive experiences with the trabs, as I expect I am heading for that outcome.  Seems inevitable. Cheers! fellow traveler ======= "Earle Jones" <earle.jo…@attbi.com> wrote in message

news:earle.jones-5301F7.12362927072002@netnews.attbi.com… > Hi!  There has been so much spam appearing here recently that I thought > I would give a recap of my glaucoma experience, which is intended to > give inspiration and hope to all who read this — especially anyone who > has been recently diagnosed and is therefore apprehensive.

(snipped)

Response:

Hi Earle, Thanks for sharing your experience. It is definitely uplifting for me to read positive experieneces. I am 40 y/o and all is going pretty well for me too, since being diagnosed about 5 years ago. My pressues were in the mid 30’s in both eyes when first diagnosed with slight cupping in the right eye with no visual field loss. I was on Betagan and it lowered my pressues to 21 and 19. Just recently we switched to Cosopt in the last 6 months and my pressues are at 18 and 16. The doctor decided to try to get them even lower at my last visit and has added Xalatan with the Cosopt. He said that everything was still stable, but since I was still relatively young at 40 y/o, that we should get the pressues even lower to be on the safe side for the future. Good Luck to everyone & God bless us all. JD… – Hide quoted text — Show quoted text -> From: Earle Jones <earle.jo…@attbi.com> > Organization: AT&T Broadband > Newsgroups: alt.support.glaucoma > Date: Sat, 27 Jul 2002 19:36:29 GMT > Subject: My glaucoma experience > Hi!  There has been so much spam appearing here recently that I thought > I would give a recap of my glaucoma experience, which is intended to > give inspiration and hope to all who read this — especially anyone who > has been recently diagnosed and is therefore apprehensive. > Fast forward to the bottom line: > My vision is 20:20 in each eye with about one diopter of correction > (measured two weeks ago).  My pressures, measured at the same time are > 16 and 18 mmHg. I take no drops at all. > Doesn’t sound much like a glaucoma patient, does it? > I was first diagnosed (common open-angle glaucoma) in 1970, with > pressured of about 22 and 24 mm.  During several followup visits, the > pressures remained about the same.  I was originally called a "glaucoma > suspect" since there was really no measurable retinal damage. Retinal > photos were almost normal — some slight cupping in the right eye. There > was some glaucoma in my family — older sister, etc. > I was put on pilocarpine drops, four times per day.  These had major > side effects:  Since I was only 39 at the time and had a good amount of > accomodation (ability to change focal distance), the drops produced huge > myopia (nearsightedness), which would last a couple of hours.  Since I > was working as an optical engineer at the time and had access to all of > the instruments, I used to measure my myopia after taking pilocarpine. > The myopia would increase from zero to plus six diopters in about 20 > minutes, then level out, then slowly return to zero in about 90 to 120 > minutes. > In addition my pupil would shrink to a needlepoint, sufficiently small > that driving at night was very difficult. > About that time, ALZA (a spinoff of Syntex) developed the "Ocusert", > which is a small porous "plastic bag" about a half-inch long and roughly > zero thickness with pilocarpine inside.  Placed in the eye, under the > lid, the insert would leak out pilocarpine at a constant rate for a > week, then the insert would be removed and replaced with a fresh one. > With a bit of practice, this became very easy. > I volunteered and became a test subject (lab rat :-) for ALZA.  The > Ocusert has a great advantage of avoiding the large dose of pilocarpine > that one gets upon dose administration causing the huge myopia.  It also > minimizes systemic problems of pilocarpine getting into the bloodstream > with those side effects. > As far as I know, the only disadvantage was cost.  Because pilocarpine > is "off-patent" it is very cheap.  Ocuserts would cost eight or ten > times as much as drop-dose pilo. > Years went by and my pressures began to rise.  We also detected some > small scotoma (areas of lowered vision) in my right eye.  My > ophthalmologist prescribed epinephrin in addition to pilocarpine. > More years went by.  New drugs were developed.  We detected small > cataracts in both eyes (probably from the long years of pilocarpine and > epinephrine).  We discontinued the pilocarpine and epi and added other > drugs.  It seemed that a new drug like Timoptic, or Trusopt, Or Alphagan > would reduce the pressures for a year or two, then they would begin to > climb. > Xalatan, Cosopt, Betoptic, I think I have tried them all. We tried argon > laser trabeculotomy (ALT) with no success.  Finally my ophthalmologist > and I discussed the idea of trabeculectomy, where a small "flap" is cut > into the sclera (white part of the eye) so that the fluid has an easier > way to outflow.  This reduces the pressure. > She suggested that we do the cataract surgery (replacing the lens with a > plastic implant) and the trabeculectomy surgery at the same time.  We > scheduled the right eye first, with the left eye to be done a couple of > months later.  (No respectable physician would operate on both eyes at > the same time.  An infection in that situation could be catastrophic.) > This surgery is done in a "surgicenter" where the patient goes in in the > morning and comes home in the evening.  Local anaesthetics are used. > We did the surgery on the right eye.  Very successful.  The pressure > went to about 14 mm.  Within a few days my vision was back at 20:20 with > one diopter of correction. > A few months later, we did the other eye.  Also very successful.  The > pressure was about 16 mm and the central visual acuity was 20:20. > I get regular checkups twice a year.  I have a *great* ophthalmologist > (Dr. Mary Ann Lloyd) at a *great* institution (The Palo Alto Medical > Clinic). > I use glasses (minus-one diopter) to drive.  For serious reading, I > might use a pair of plus-one or plus-two magnifiers (reading glasses). > At the computer I am in perfect focus. > Remember that I was diagnosed in 1970.  The past thirty years has > brought about great changes in treatment, both in medicine and surgical > techniques.  New drugs are being brought to the market every day. > And so:  If you are diagnosed with glaucoma, find out as much about your > case as possible.  There are several kinds of glaucoma.  Get a good > physician in a good institution.  Get regular checkups.  You must make a > decision to be a good patient.  Follow your doctor’s orders.  Most > importantly, keep up the schedule of medications.  This is difficult. > It is very easy to let yourself skip a drop now and then. > Since glaucoma has no initial symptoms, applying the drops does not seem > to have any effect.  Subconsciously, it seems that skipping a few drops > now and then is OK. > It is *not* OK. > Read http://wills-glaucoma.org/ regularly. This is a great source of > information.  Also read > http://www.web-xpress.com/gany > http://www.web-xpress.com/nygri > http://www.nyee.edu. > And read the FAQ (frequently asked questions) that Ray Bonar updates and > posts here regularly. > Finally, read this newsgroup (alt.support.glaucoma) regularly and > compare notes with other patients and physicians.  This newsgroup was > established by Dr. Robert Ritch, a well-known research-minded glaucoma > specialist and Director of the Eye Department at the New York Eye and > Ear Infirmary.  Ray Bonar, who works with Dr. Ritch, posts here > frequently. > And good luck!  Stay positive.  Work on all of your health problems. > Eat well.  Keep you weight in check. Exercise!  Floss your teeth!  Use > sunblock! (Do I sound like your mother?) > All those good things! > earle > *

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Response:

Hi!  There has been so much spam appearing here recently that I thought I would give a recap of my glaucoma experience, which is intended to give inspiration and hope to all who read this — especially anyone who has been recently diagnosed and is therefore apprehensive. Fast forward to the bottom line: My vision is 20:20 in each eye with about one diopter of correction (measured two weeks ago).  My pressures, measured at the same time are 16 and 18 mmHg. I take no drops at all. Doesn’t sound much like a glaucoma patient, does it? I was first diagnosed (common open-angle glaucoma) in 1970, with pressured of about 22 and 24 mm.  During several followup visits, the pressures remained about the same.  I was originally called a "glaucoma suspect" since there was really no measurable retinal damage. Retinal photos were almost normal — some slight cupping in the right eye. There was some glaucoma in my family — older sister, etc. I was put on pilocarpine drops, four times per day.  These had major side effects:  Since I was only 39 at the time and had a good amount of accomodation (ability to change focal distance), the drops produced huge myopia (nearsightedness), which would last a couple of hours.  Since I was working as an optical engineer at the time and had access to all of the instruments, I used to measure my myopia after taking pilocarpine.   The myopia would increase from zero to plus six diopters in about 20 minutes, then level out, then slowly return to zero in about 90 to 120 minutes. In addition my pupil would shrink to a needlepoint, sufficiently small that driving at night was very difficult. About that time, ALZA (a spinoff of Syntex) developed the "Ocusert", which is a small porous "plastic bag" about a half-inch long and roughly zero thickness with pilocarpine inside.  Placed in the eye, under the lid, the insert would leak out pilocarpine at a constant rate for a week, then the insert would be removed and replaced with a fresh one. With a bit of practice, this became very easy. I volunteered and became a test subject (lab rat :-) for ALZA.  The Ocusert has a great advantage of avoiding the large dose of pilocarpine that one gets upon dose administration causing the huge myopia.  It also minimizes systemic problems of pilocarpine getting into the bloodstream with those side effects. As far as I know, the only disadvantage was cost.  Because pilocarpine is "off-patent" it is very cheap.  Ocuserts would cost eight or ten times as much as drop-dose pilo. Years went by and my pressures began to rise.  We also detected some small scotoma (areas of lowered vision) in my right eye.  My ophthalmologist prescribed epinephrin in addition to pilocarpine.   More years went by.  New drugs were developed.  We detected small cataracts in both eyes (probably from the long years of pilocarpine and epinephrine).  We discontinued the pilocarpine and epi and added other drugs.  It seemed that a new drug like Timoptic, or Trusopt, Or Alphagan would reduce the pressures for a year or two, then they would begin to climb. Xalatan, Cosopt, Betoptic, I think I have tried them all. We tried argon laser trabeculotomy (ALT) with no success.  Finally my ophthalmologist and I discussed the idea of trabeculectomy, where a small "flap" is cut into the sclera (white part of the eye) so that the fluid has an easier way to outflow.  This reduces the pressure. She suggested that we do the cataract surgery (replacing the lens with a plastic implant) and the trabeculectomy surgery at the same time.  We scheduled the right eye first, with the left eye to be done a couple of months later.  (No respectable physician would operate on both eyes at the same time.  An infection in that situation could be catastrophic.) This surgery is done in a "surgicenter" where the patient goes in in the morning and comes home in the evening.  Local anaesthetics are used. We did the surgery on the right eye.  Very successful.  The pressure went to about 14 mm.  Within a few days my vision was back at 20:20 with one diopter of correction. A few months later, we did the other eye.  Also very successful.  The pressure was about 16 mm and the central visual acuity was 20:20. I get regular checkups twice a year.  I have a *great* ophthalmologist (Dr. Mary Ann Lloyd) at a *great* institution (The Palo Alto Medical Clinic). I use glasses (minus-one diopter) to drive.  For serious reading, I might use a pair of plus-one or plus-two magnifiers (reading glasses).   At the computer I am in perfect focus. Remember that I was diagnosed in 1970.  The past thirty years has brought about great changes in treatment, both in medicine and surgical techniques.  New drugs are being brought to the market every day. And so:  If you are diagnosed with glaucoma, find out as much about your case as possible.  There are several kinds of glaucoma.  Get a good physician in a good institution.  Get regular checkups.  You must make a decision to be a good patient.  Follow your doctor’s orders.  Most importantly, keep up the schedule of medications.  This is difficult.   It is very easy to let yourself skip a drop now and then. Since glaucoma has no initial symptoms, applying the drops does not seem to have any effect.  Subconsciously, it seems that skipping a few drops now and then is OK. It is *not* OK. Read http://wills-glaucoma.org/ regularly. This is a great source of information.  Also read http://www.web-xpress.com/gany http://www.web-xpress.com/nygri http://www.nyee.edu. And read the FAQ (frequently asked questions) that Ray Bonar updates and posts here regularly. Finally, read this newsgroup (alt.support.glaucoma) regularly and compare notes with other patients and physicians.  This newsgroup was established by Dr. Robert Ritch, a well-known research-minded glaucoma specialist and Director of the Eye Department at the New York Eye and Ear Infirmary.  Ray Bonar, who works with Dr. Ritch, posts here frequently. And good luck!  Stay positive.  Work on all of your health problems.   Eat well.  Keep you weight in check. Exercise!  Floss your teeth!  Use sunblock! (Do I sound like your mother?) All those good things! earle *

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