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Glaucoma - A Patient's Treatment, Symptoms, & Concerns

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Parts III and IV

Continuation from Parts I and II of this series. My wife Mary was diagnosed with Glaucoma about 10 years ago. This section of our Health Awareness Forum follows 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. 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. 

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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 ddamp@aol.com.

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

 

Nothing seemed to be making sense with my wife’s treatment. It appeared that eye drops increased her pressure, especially when she was placed on multiple drugs. Surgeries that were designed to improve her IOP didn’t. Every time we went in for checks her IOP fluctuated dramatically. Different doctors and specialist would get wildly varying IOPs within 10 minutes of each other. We got the prescription filled but Mary refused to take it. She wanted to wait a while to think things over. I searched the internet for days to locate clues as to why this was happening.  

We started to ask questions, e-mailed the doctor our concerns, called the doctor’s staff and technicians to question procedures, equipment calibration, etc. We discovered that many factors effect IOP readings including stress, vitamin and mineral supplements, exercise, caffeine, systemic blood pressure, menopause, and life style issues.   

Prior to Mary going to her follow-up visit we sent the doctor a three page letter describing our concerns after doing considerable research and purchasing a Proview IOP home monitor. Mary and I thought that her IOP pressure was staying elevated all of the time. Fortunately, Bausch and Lomb manufactures a home IOP pressure measuring device called the “Proview” and we purchased one direct from www.drugstore.com, local pharmacies didn’t carry it. You don’t need a prescription for this device and it only cost $69.00 plus shipping. The doctor that frequently suggested Filter Surgery often questioned what Mary’s pressure was on the days she wasn’t at the doctor’s office. He was concerned that it may be going even higher. Now we could check it at home. You can visit the Bausch and Lomb web site at http://bausch.com to review information on this excellent device. You can also view a video on the Proview monitor online.  

When my wife first went to the eye doctor 10 years ago her IOP readings were 20R/21L (unadjusted). The average IOP ranges between 14 – 20 mmHg. Here is the kicker. We discovered that my wife has thicker corneas than most. When we purchased the Proview Monitor my local Optometrist checked my wife’s IOP on her Goldmann Tonometer so that we could verify the Proview’s accuracy and establish offset factors for home readings. She advised Mary to have a cornea thickness Pachymetry test. Thicker corneas give high false IOP readings on the Goldmann Tonometer pressure test set. I called my wife’s second doctor and his staff confirmed from previous tests that her corneas were R 561 microns and L 592 microns thick which equates to an adjustment factor of -1 mmHg in her right eye and -4 mmHG in her left eye off of the Goldman Tonometer readings. Mary’s actual IOP (adjusted by the Duke University's IOP Correctional values Chart) was now only reading 22/22, in the low 20s after using the correction factors. This was confirmed on our optometrist’s Tonometer and our Proview monitor.

Doctor Mark Sibley, M.D.,F.A.C.S., Board Certified Ophthalmologist and Medical Director of the Florida Eye Center states that, “if a patient has not had a Pachymetry cornea thickness reading nobody knows if they have a diagnosis of glaucoma or not.” This is a very important test.  

Further research uncovered information on Ocular Hypertension at the Pacific Cataract and Laser Institute’s web site, a condition that warrants monitoring but not necessarily aggressive treatment. We were unaware that this condition existed and the symptoms of Ocular Hypertension fit my wife to the tee. A case study referenced on this site presented the following clinical observations for Ocular hypertension: 

·        High intraocular pressure (IOPs Over 21 mmHg)

·        Normal ocular nerve head

·        Normal visual field

·        No response to glaucoma medications 

When my wife was first referred to the Ophthalmologist ten years ago her actual IOP was only 19R/17L (adjusted) and would not have been referred for further evaluation. This is a double edge sword. If she would not have been referred, her narrow angle glaucoma may not have been diagnosed with serious consequences. On the other hand, if she hadn’t been diagnosed in her mid 40s she would have avoided the medications that have caused her considerable hardship these past 10 years. We both believe that her erratic eye pressure is impacted by many factors other than Glaucoma and we believe the medications at times actually cause higher IOP readings.  

Many doctors don’t adjust their Goldmann Tonometer’s (GAT) readings for cornea thickness and we have debated this point on several visits. The Duke University Eye Center publishes an IOP Correctional Value Chart that we use to calculate what we believe is Mary's true IOP. The Goldmann Tonometer is calibrated for a cornea thickness of 515 microns and the Goldmann Tonometer’s IOP readings are not accurate for cornea thickness that varies from the calibrated standard. The Goldmann IOP readings are adjusted from a -7 mmHg with corneal thickness of 645 microns to a +7 mmHg for corneal thickness of 445 microns. What a difference. I have read numerous studies confirming that thicker corneas give false high Goldmann Tonometer readings. Conversely, thinner corneas read much lower and this may be one of the reasons there is such as thing as low tension Glaucoma. The GAT apparently can't accurately read low tension patients pressure accurately either. Actually, we are finding that the Proview Monitor is more accurate, has less of an adjustment factor, than the Goldmann Tonometer. The Proview reads 2 mmHg lower in each eye and the Goldmann Tonometer reads +1 mmHg higher in her right eye and +4 mmHg in her left eye. I apparently have normal cornea thicknesses because my Proview IOP readings mirror my Optometrist’s Goldmann Tonometer readings.    

Side Note 

After we purchased the Proview monitor we questioned why the doctors hadn’t recommended this device to us years ago. Neither doctor mentioned the availability of a home IOP monitor kit. We think doctor’s may be concerned that patients will depend on this unit as their sole IOP monitoring device or may not come in for important recurrent checks if they use this device. We calibrated our Proview with two Goldmann Tonometers from different offices and developed a correction factor that is working well for Mary.  It is also possible that the Proview is fairly new and more studies are needed to convince doctors of this excellent tools' worth.

The more we researched and learned about Ocular Hypertension the more it made sense. When my wife went in for her initial visual field test 10 years ago she went on the day before Christmas and they were short staffed. She was nervous and uncomfortable during the test and immediately questioned whether or not it would be accurate. She also felt that the staff specialist was rushing her through the test probably because of the holiday and we were the last ones in the waiting room. This first test indicated some sight loss. However, all subsequent visual field checks showed loss of sight basically in the area where the Schisis was diagnosed two years ago. The doctor confirmed that the visual field test showed sight loss in that area so apparently her visual field checks had been good all these years. Mary didn't have any of the diagnostic tests the first eight years she was being treated that would have detected the Schisis, confirmed her optic nerve density, or cornea thickness.

My wife has had reactions to all glaucoma medications and tolerates few. She did not take the second eye drop her new doctor prescribed last visit due to her concern that her pressure would increase as it did in the past when prescribed multiple medications.

The possibility exists that Mary’s pressure variations may be due to Ocular Hypertension, stress, white coat blood pressure syndrome, possible negative reactions to Fluress and other glaucoma medications, secondary issues with debris caused by the two iridotomy surgeries, and Goldman Tonometer readings that weren’t adjusted for cornea density.

Contradictions

1.   Tests that Mary took last year indicated that her optic nerve thickness was good.

2.   The perimeter tests were good except for the area where the Schisis is located. The doctor compared the location of the Schisis and the visual field tests. Eye sight loss was limited to the area around the Schisis and not nerve damage attributed to glaucoma.

3.   The three indicators for a diagnosis are nerve head damage, perimeter test results, and lastly IOP. All are good except for variations in IOP. Mary’s erratic IOP may be attributed to other factors.

4.   The Proview IOP Monitor confirmed that her IOP does not vary more than + or – 1 mmHg morning to night and the longer she is away from the doctor’s visit the more her IOP drops. It is now measuring 14R / 16L.

Continue to Part V (The Beat Foes On)

Return to the Health Forum Main Page

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My wife and I were not able to find many glaucoma patient's personal experiences online. We thought that others may benefits from knowing what Mary has experienced these past 10 years. We intend to keep this forum active throughout my wife's treatment. Others are encouraged to send comments.

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