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FEDERAL EMPLOYEE'S
HEALTH AWARENESS FORUM

Glaucoma - A Patient's Concerns and Issues

My wife Mary was diagnosed with Glaucoma about 10 years ago at age 45. This section of our Health Awareness Forum will follow Mary’s case from its inception in 1995 to present day treatment. These articles document the many issues we encountered with diagnosis and treatment over the years and the dire consequences of this disease. If Glaucoma is not treated timely it can lead to blindness. Parts I through VI of this series discuss Mary’s Glaucoma diagnosis, treatments and surgeries, and summary of our findings. They also present treatment options and things to consider if you are diagnosed with this disease.

Disclaimer

Readers are strongly cautioned to consult with a physician or other health-care professional before using any information contained in this forum. No forum can substitute for professional care or advice. Extreme caution is urged when using the information contained in the articles that are posted on this site. The authors and publisher are not engaged in rendering medical services. If medical problems appear or persist, the reader should consult with a qualified physician or other health-care professional. Accordingly, the authors and publisher expressly disclaim any liability, loss, damage, or injury caused by the contents posted on this health care forum.

Copyright by Dennis V. Damp. All rights reserved. No part of these articles may be reproduced or transmitted in any form or by any means, electronic or mechanical. Including photocopying, without the written permission from the author, except for the inclusion of brief quoted excerpts or in reviews. Contact Bookhaven Press at or write to Bookhaven Press LLC, P.O. Box 1243, Moon Township, PA15108. Web sites may link to these pages and include a short review without prior permission as long as they give full credit to this forum with the link.

TABLE OF CONTENTS

Glaucoma - A Day of Reckoning - Part I(2)

A New Doctor and SLT Laser Treatments - Part II(3)

Iridotomy & SLT Surgeries - Part III(5)

Taking Control of the Situation - Part IV(6)

The Beat Goes On---and On - Part V(10)

Less Medicine – MORE benefit!!! Part VI(1/2/07)(14)

The End Game – Off Meds & Pressure Managed Part VII (3/8/08)(15)

Conclusions and Summary - Part VIII(19)

Return to Health Forum Main Page

Glaucoma – The Day of Reckoning - Part 1
A Glaucoma Patient’s Perspective and Observations

Glaucoma is a disease that damages the optic nerve. This disease is often referred to as the “silent thief” because many don’t know they have it until much of their peripheral vision is lost. This is just one reason why you should schedule time for an annual eye exam. The Optometrist not only checks your general vision they also check your Intraocular Eye Pressure (IOP), look at the optic nerve with an Ophthalmoscopy, and use a mirrored lens called a Gonioscopy to view the angle where the cornea and iris meet. In most cases high IOP pressure damages the optic nerve over time.

I interviewed Doctor Mark Sibley, M.D.,F.A.C.S., Board Certified Ophthalmologist and Medical Director of the Florida Eye Center in October. He stated that, “glaucoma causes the drains inside the eyes to clog up. The eye makes fluid internally and the pressure can’t escape causing nerve damage and eye sight loss.” Doctors use drugs, laser, and surgical procedures to improve the flow of the fluids in the eye and reduce pressure. There are also cases of what is called low tension glaucoma where nerve damage progresses even with very low IOPs. My wife was diagnosed with Primary Open Angel Glaucoma (POAG), Narrow Angle Glaucoma, and two years ago she was diagnosed with a rare optic nerve birth defect called Schisis. There are many sub classifications within these groups. Many medical facilities and Internet web sites provide abundant information on this disease including the University of Pittsburgh Medical Center,Florida Eye Center, University of Maryland Medicine, and Glaucoma Associates of New York web sites to name a few.

My wife went for a routine eye exam in 1995. She was experiencing what is called “ocular Migraines,” strange visual disturbances usually lasting for short durations without a headache. Her eye sight checked 20/20 however she had elevated IOPs of 20R/21L millimeters of mercury (mmHg). Average IOP ranges from 14 to 20 mmHg. High IOP readings are one of glaucoma’s three primary indicators. To make a Glaucoma diagnosis the doctor measures the patient’s IOP with a Goldmann Tonometer, performs a visual field test, and checks the condition of the optic nerve. High IOP in and of itself doesn’t confirm a glaucoma diagnosis. Pressure readings are relative and effected by many variables. More on this later.
Mary was referred to an Ophthalmologist and he measured her IOP at 26R (right eye) and 27L (left eye) mmHg and ordered a visual field check. The visual field check showed indications of optic nerve damage and the doctor prescribed Timoptic, a beta blocking agent. Mary had allergic reactions to the drops and her IOP didn’t decrease so they prescribed Trusopt which also caused severe allergic reactions.

Through the course of the first year to 16 months of treatment she was prescribed pretty much all of the available drugs, sometimes two at a time, with little to no benefit and the side effects such as red eyes, facial swelling, hives, rashes, cramping, respiratory problems, and general eye irritation were severe. Her eyes were constantly irritated; she suffered from upper respiratory problems, and had to avoid smoke of all types. It appeared that the more changes they made to her treatment the higher her IOP went and after about 16 months her eye pressure was in the mid 30s in both eyes.

The doctor recommended and performed Argon Laser Trabeculoplasty (ALT) Laser surgeries on both eyes about a year and a half after initial diagnosis and the pressure fell to the low to mid 20s. This procedure burns holes in the trabecular meshwork to improve eye drainage and reduce pressure. New procedures have pretty much eliminated the use of the ALT for this purpose. Most doctors now use the newer and much less invasive Selective Laser Trabeculoplasy SLTfor this purpose. More on this later.

She had to continue taking Xalatan drops, a prostaglandin with many side effects including respiratory problems, etc. Her pressure fluctuated in the safe range until about two years ago.

A New Doctor and SLT Laser Treatments - Part ll
A Glaucoma Patient’s Perspective and Observations

My wife and I learned a costly and valuable lesson. Don’t assume anything, research your condition online, and get a second opinion. Anytime you are diagnosed with a chronic disease, illness, prescribed medications, or recommended for surgery get a second opinion. At the very least, research the procedure or medicine online. You are potentially impacting the quality of your life every time you take medications or have surgeries or out patient procedures. You need to verify that all diagnostic tests have been done – under the right conditions – BEFORE proceeding and evaluate all other treatment options. You also need to evaluate:

1. The effects life style changes can have on your IOP

2. IOP home monitoring options (Proview by Bausch and Lomb)

3. Vitamin and mineral supplements

4. Whether or not you are simply ocular hypertensive (The OHTS Study)

5. The effects of stress, caffeine, and other substances have on your IOP readings and much more.

6. Exercise

Look before you leap and you will not be sorry later.

We didn’t have enough information ten years ago or knowledge to ask her first doctors critical questions or question the integrity of tests. The internet has changed all of this and now you can research about anything online with success.

Several years ago we elected to go to another Ophthalmologist to explore new IOP lowering techniques. Mary’s current doctor had been recommending invasive Filtering Microsurgery Surgerysince she had the ALT laser surgery in 1997. The surgeon operates on the eye with a scalpel to create a new drainage structure. Patients typically loose 10% or more of their vision immediately with this surgery and they are highly susceptible to cataracts and other serious complications.

I was researching my wife’s condition online and discovered that many doctors were having great success with the new Selective Laser Trabeculoplasty (SLT) laser surgery. Mary’s doctor didn’t have the SLT Laser and could not do the surgery. This new procedure stimulates the cells in the trabecular meshwork, located in the angle between the cornea and the iris, to increase their fluid pumping action without damaging the meshwork. Doctor Mark Sibley, M.D.,F.A.C.S., Board Certified Ophthalmologist and Medical Director of the Florida Eye Center offered this excellent analogy of how this works. He stated that the SLT’s red laser light cleans out the blockage by agitating the clogged material in the drainage system. “It’s like thumping dried mud until it breaks up the clog into sand so the body can wash the debris out of the system.” The SLT can be repeated and does not damage the meshwork unlike the ALT laser treatment that physically burns holes in the meshwork. ALT surgeries can’t be repeated.

Her new doctor took extensive tests including nerve density, pachymetry cornea thickness readings, and OTIScans (an ultrasound of the eye) that showed the complete eye structure and can reveal conditions such as pupillary block and plateau iris components. The test results caused Mary and I to question much of what had transpired over the past 8 years. Her optic nerve was thick and healthy except for a small birth defect in the right eye – Schisis, a rare optic nerve defect, her corneas were thicker than normal which meant her actual eye pressure was lower than what the Tonometer was reading in the doctor’s office. We learned about the Goldmann Tonometer IOP adjustment factors from my optometrist by chance. The OTIS scan proved that her angles were very narrow and needed immediate iridotomy surgeries to avoid the possibility of angle closure. The doctor wouldn’t do the SLT surgery until Mary had the iridotomy surgeries. Angle closure could cause the eye drainage to plug up suddenly resulting in extensive eye damage if not treated.

Glaucoma is diagnosed through a minimum of three tests, optic nerve damage, visual field tests, and lastly IOP. The tests that were mentioned in the previous paragraph showed that even after 10 years with the disease Mary’s optic nerve was in excellent condition except for a small birth defect on the right eye. Schisis caused the visual field test to show loss of sight in that area. All previous perimeter tests also showed eye sight loss limited to that area except the first one that she took under stressful conditions.

My wife initially went to the doctor to explore SLT surgery options to lower her IOP and was now scheduled for two iridotomy surgeries the following week. We both had reservations about the surgery because my wife’s IOP was elevated to the mid 20s and susceptible to spiking into the mid to high 30s. At the time we were not aware that Mary’s IOP was actually lower due to her thicker corneas. Her actual IOP (after adjusting them for cornea thickness) in her left eye was approximately 21 mmHg and her right eye about 24 mmHg, not the 25R/25L that the Tonometer measured. Many doctor's don't use the adjustment factors however I believe that all eye doctors do agree that thicker corneas can tolerate higher GAT IOP pressure readings. Even this was higher than her actual readings and I will fully explain why in Part 4 and 5 of this series. Secondly, Mary felt that the debris from the laser surgery, the minute pieces of tissue that remain after the laser burned holes through the Iris to relieve the pressure and open the angles, would clog the drainage in the meshwork further. Her doctor wasn’t concerned about this at the time.

Iridotomy & SLT Surgeries - Part lll
A Glaucoma Patient’s Perspective and Observations

Mary’s IOP pressures were in the mid 20s, actually lower due to her thick corneas, when she went in for the Iridotomy laser surgeries. One hour after the surgery her IOP elevated to the high 30s. What we had feared happened. Apparently, the debris from the holes they burned in both irises were clogging the eye drainage canals. The doctors said that Mary was one in 100, most after surgery experienced lower IOPs. They gave her multiple drops of various IOP lowering drugs until the pressure decreased to the low 30s and she was advised to come back in two weeks.

Two weeks later her IOP dropped to the mid 20s and she changed medicine to Xalatan which she tolerates a little better. She returned to her original doctor for routine checks. After about 9 months her IOP elevated and she went back on Lumigan, a stronger prostaglandin. The doctor again recommended Filtering Surgery and Mary insisted on going back to the new doctor to be evaluated for SLT laser surgery.

The new doctor agreed that the surgery could help lower her pressure and Mary insisted that they only do the SLT procedure on her right eye first, the eye with the highest IOP. She was apprehensive after what happened with the Iridotomy surgery earlier.The SLT surgery was painless and only took a few minutes to complete.

The surgery went well and initially her IOP dropped to the mid to high teens, actually lower because of her thick corneas. At the two week post op visit her IOP was in the high teens and she was advised to return in two months. At the two month check her IOP had increased to the mid 20s. Several medical specialists and doctors took her pressure and each obtained widely varying IOP readings from 23/25 to 29/29. The doctor then prescribed a second eye drop, a Beta-Blocker called Timoptic, without preservatives. Mary had allergic reactions to this drug when she was first diagnosed with Glaucoma and she was scheduled for a follow-up visit 4 weeks later.

Note: We were concerned about wildly varying Goldmann Tonometer IOP readings at the doctor's office. The staff and doctors would take as many as three IOP readings per visit and the readings increased dramatically from the first to last check, sometimes by as much as 9 to 12 mmHg in one eye. I questioned the Tonometer calibration, the expertise of the persons taking the tests, the procedures used, and couldn't determine why the readings varied so much. It's hard to put any faith in a test where the readings varied from a low of 14mmHg to 26 mmHg in the same eye within 15 to 30 minutes between readings. Later on, after Mary started using the Proview IOP monitor, she confirmed that her IOP readings were relatively steady and varied + or - 1 mmHg at the most throughout the day.

I noticed one common denominator for all of these tests. The numbing drop they use prior to taking IOP readings. The standard drug used for this is called Fluress. Could my wife have an allergic reaction to this medication? She is allergic to the majority of glaucoma drugs. I asked the doctor about this and he pretty much discounted it. Fluress must be refrigerated before it is used and then after it is opened it only has a shelf life of 30 days. I sent a letter to the doctor asking him if the Fluress was outdated or contaminated or were they using the generic brand of Fluress. The generic brands may use Timeorsal as a preservative that causes a number of allergic reactions. I would like to locate more information on this subject. If anyone has information or located research that shows similar characteristics send an email message to .

There were just too many inconsistencies in what we were experiencing and Mary and I knew for a long time now that something just wasn’t right. I know that medicine isn’t an exact science. However, there were too many contradictions and questions that we could not get answers to.

Taking Control of the Situation - Part lV
A Glaucoma Patient’s Perspective and Observations

Proview IOP Home Monitoring and the Ocular Hypertensive Treatment Study