FEDERAL EMPLOYEE'S
HEALTH AWARENESS FORUM

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

Parts VI, VII & VIII

• Part VI   -   Less Medicine - More Benefit!!! (1/2/07)

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

• Part VIII -  Conclusion and Summary

• Return to Beginning of Series

• Download Parts I-VIII (Word Document)

Includes Questions to Ask Your Doctor & Suggestions

Continuation from Part VI and VII of this series. Additional parts will be published as treatment continues. Stop back from time to time for updates. My wife Mary was diagnosed with Glaucoma about 11 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 VII 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 & Copyright
 

Part VI

Less Medicine — More Benefit!!!
A Glaucoma Patient’s Perspective and Observations

Posted January 1, 2007

Mary visited the Doctor and completed numerous tests in 2006. She used the Proview daily to monitor her IOP and we anticipated that her IOP would be in the mid to high teens based on our established correction factors. Her IOP readings elevated above what we had anticipated and we determined that the Proview Monitor doesn’t track GAT IOP readings reliably in the mid 20s and above. We purchased a new Proview to compare readings. The IOP readings were higher on the new Proview and we established new corrections factors as discussed in previous articles.

In June Mary’s IOP readings were R18 / L23. Mary suffers numerous side effects from Lumigan, the Prostaglandin drug that she takes. Mary decided to reduce her eye drops to every other day to see what effect this would have on her IOP. The Doctor agreed and scheduled a follow-up appointment in July. Mary has thicker corneas and can stand higher IOP pressure. Her readings four week later only increased slightly and she decided to maintain the every other day routine to reduce side effects.

Her next appointment was scheduled for November and to our surprise her pressure dropped considerably in both eyes. Our contention for years was that the medications were causing problems and elevated IOP. Her IOP read R15 / L16 at the first IOP check at noon. On the second check at 3:35 p.m., after her pupils were dilated for several OCT scans and Perimeter checks, her pressure read R17 /  L21. Pupil dilation causes IOP to rise.

This was good news for all and Mary asked to switch to Xalatan. She thought that it would have fewer side effects. She started taking the Xalatan everyday and found the side effects worse than what she was experiencing previously with Lumigan. After three weeks she went back to Lumigan every other day.

My wife’s condition is quite unusual. The doctor’s discovered Schisis in her right eye 3 years ago. The perimeter test only showed a slight problem with the right eye, one quadrant, where the Schisis was present and there is a scar close to the macular just above the Schisis. The perimeter checks over ten years show no change, only the same eye sight loss in one small area where the scar is located. Mary has apparently had this condition for many years, possibly since birth.

She was asked to participate in a UPMC glaucoma study and it was recently published. The odd thing about her condition is that the Schisis, which is similar to edema or swelling, was thought to be a birth defect and irreversible. To all of our surprise the Schisis disappeared in the right eye. Unfortunately is reappeared in the left eye!  My online research discovered that Prostaglandin drugs can cause what is called Macular Edema, a swelling under the Macular and asked the doctor if the prostaglandin medications may have caused Schisis. He dismissed the assumption and is not sure why this occurred.  

Our observations may hold the key. Mary’s right eye, prior to SLT surgery, always had higher IOP than the left eye. It seems that the Schisis disappeared after the SLT surgery was performed on Mary’s right eye only after the pressure reached the mid to high teens. It took many months for the SLT to dramatically lower Mary’s IOP. Actually, her pressure went up the first month and it took about a year for the pressure to reach the mid teens. Considering that her IOP in the right eye before SLT surgery was in the high 20s and above, that’s a dramatic drop.

It appears that the higher pressure along with possibly the eye irritation caused by the prostaglandin drugs may in combination create this edema or schisis and increased pressure readings. Things seem to be coming together the more we experiment. For example, after the SLT surgery and the pressure decreased the schisis disappeared! Mary elected to take drops every other day and the pressure reduced more, about 4 mmHg in the right eye and 6 mmHg in the left eye. Coincidence or not, only time will tell.

Part VII

The End Game - Off Meds & Pressure Managed
A Glaucoma Patient’s Perspective and Observations

Posted March 8, 2008

The last update in early 2007, Part VII of this series, was a turning point for Mary.  Her IOP was in the high teens to low 20s and she was able to reduce her eye drops to every other day with only a slight increase in Intraocular Eye Pressure (IOP). Her goal has always been to get off medications altogether because of the many side effects that she suffers from when taking Lumigan, or for that matter any of the many eye drops she has been on over the past 12 years. I believe even the doctor was surprised that reducing the eye drops to every other day didn’t dramatically increase her IOP.  If you are experiencing serious side effects to your glaucoma medications, you may be able to try this under your doctor’s supervision and care.  Don’t do this on your own, talk it over with your physician first to make sure he agrees and monitors you throughout the test period.  Everyone’s case is different. Just because it worked for Mary doesn’t mean it will work for everyone. Case in point, according to Doctor Schuman from the UPMC Eye Center, the Selective Laser Trabeculoplasty (SLT) laser treatment that my wife has had three times in the past 2 years to reduce her IOP, doesn’t work on 30% of glaucoma patients.  Fortunately for Mary she has had excellent results with the SLT.

In 2007 Mary achieved her goal, she is now off medications. We don’t know for how long, it has been over 6 months so far and we are optimistic that she will be able to stay off medications indefinitely or at least for the foreseeable future. Mary’s visual field tests, OCT, and other diagnostic tests showed no significant changes since she went off medications. This is exceptional considering that her previous doctor told her she would never be off medications and that she required scalpel surgery to lower her IOP. This was the main reason Mary decided to seek a second opinion and consider SLT laser surgery. Her previous doctor offered her few options and we both felt that her case was unique as we discussed in earlier articles in this series.  Be sure to read the conclusion, part VIII of this series, where we suggest things that you need to discuss with your eye doctor when you go in for your next visit.  Had Mary taken these precautions when she was first diagnosed, we believe the outcome would have been different and she possibly would not have gone on medications to begin with.  

Mary has been going to the UPMC Eye Center in Oakland, just outside of Pittsburgh PA, for about 3 years now. She is under the care of Doctor Joel Schuman, the Eye Center’s director and ophthalmology department chairman.  He listened to our concerns and worked with us throughout her treatment at UPMC.  Mary and I insisted on being actively involved with her treatment and some doctors are not quite as accommodating to this approach.  

Doctor Schuman asked Mary to participate in a study concerning her condition and the results were published in The American Journal of Ophthalmology. The title of the article is “Periopapillary Schisis in Glaucoma Patients With Narrow Angles and Increased Intraocular Pressure.” At the time of the study only two patients were known to have this condition. Mary was also interviewed by Pohla Smith for a Pittsburgh Post Gazette article about the UPMC Eye Center, the article was published February 27, 2008.

Mary’s case did prove to be unusual as we anticipated and we believe that she is ocular hypertense as described in previous articles, has narrow angles that were treated with iridotomy surgeries, has a rare eye condition called schisis  – diagnosed with the OCT and other diagnostic tests, and suffers from white coat hypertension that causes her blood pressure and IOP to spike dramatically whenever she gets near a doctor. 

We have proven the white coat hypertension hypothesis numerous times where we observed IOP increases of as much as 12 mmHg during one visit from the first to the final IOP GAT pressure check.  Even during her last visit on March 4, 2008 her IOP during the first pressure check measured R 22 / L 19. The second check, an hour and a half later, measured R 21 / L 29.  Mary and I knew immediately that the higher IOP readings were incorrect for a number of reasons. First, Doctor Schuman rechecked the reading, making sure my wife breathed normally during the check, and her IOP reading was R 23 / L 21, almost the same reading as earlier. Secondly, my wife can actually tell me before a doctor’s visit if her IOP is normal, lower than usual, or high from physical observations. When her pressure is low, in the high teens to low 20s she has a harder time reading small print and when they test her vision she will miss a few of the letters on the smallest scale. We believe this is caused from eye lens distortion. Just imagine a beach ball that’s fully inflated, its outside surface is smooth, when you let the air escape, the outside surface distorts.  Her eyes feel different when her IOP is high as well and she can read really small print with ease. The Proview IOP monitor that she uses at home also gives her relative readings and an indication of whether or not her IOP is high.

During the year, Mary had two Selective Laser Trabeculoplasty (SLT) surgeries on her left eye. She had an SLT in her right eye about two years ago. After the first surgery in early 2007 she went off medications with her doctor’s consent to see if her IOP would stay in the normal range. Her IOP increased over time from R 22 / L 22 uncorrected on September 25^th to the mid to high twenties in both eyes by December. The doctor performed a second SLT on Mary’s left eye January 14, 2008 and her IOP dropped from the mid twenties the day of the surgery to an IOP reading of 20 that day. On March 14^th her IOP was R 23 / L 19 without medications. The good thing about the SLT is that it can be repeated frequently without damaging the meshwork like the ALT does.

Mary was able to get off medications due to the availability of Selective Laser Trabeculoplasty (SLT) laser surgeries at the UPMC Eye Center. Doctor Schuman’s profound understanding of Mary’s case, through extensive diagnostic testing that is only available in our area at the UPMC Eye Center, and his awareness of the adverse side effects she suffered while on medication was a major contributing factor as well.  His willingness to work with us and the fact that he took into consideration our perspective and input for her treatment is commendable.  

If you have glaucoma read the conclusion, Part VIII of this series before going back to see your doctor. If your doctor has diagnosed you with glaucoma without extensive diagnostic tests, go for a second opinion to a medical facility that offers them. If your doctor doesn’t have the diagnostic testing mentioned in these articles, he should, at a minimum, send you to a diagnostic facility in your area to have these tests before prescribing medications and treatment. The tests include but are not limited to:

• Visual Field Testing (Checks visual  field for blind spots)

• Pachymetry cornea thickness tests (Thicker corneas can take higher pressure)

• OTIScans (an ultrasound of the eye)

• Optical Coherence Tomography (OCT) Retina Scanner

• GDX (Measures the thickness of the nerve fiber layer around the Optic disc.)

• Heidelberg Retinal Tomographer (HRT) MACULAR screening  

·          In four months Mary goes back for a second checkup and for OCT and visual field tests. Mary is relieved that she is off medications and is doing whatever she can to remain off them indefinitely. Only time will tell. Thanks for following this case study. We intend to update this series annually in the hopes that the information provided will help you better understand and evaluate your personal situation.  If you would like to comment on this article email ddamp@aol.com.

Part VIII

Conclusion and Summary 
A Glaucoma Patient’s Perspective and Observations

 

After considerable research and time invested we believe we now have a much better handle on my wife’s case. Treatment involves a partnership where patient and doctor can have meaningful dialog to get to the bottom of each case. I believe that too many patients leave everything up to the physician, who is often distracted and overworked. Sometimes you have to get their attention with facts, speculation, and just put the brakes on so your case gets the attention it deserves. Things aren’t always what they seem and what at first may appear insignificant takes on a while new dimension as time progresses. I believe it is also helpful to maintain a journal for your treatment so you can review it from time to time for clues.

We certainly don’t have all of the answers and we intend to work with Mary’s doctors throughout her treatment. Overall, we believe that my wife may have initially been ocular hypertensive. The initial visual field test was flawed due to time and circumstance. Subsequent visual field tests may have been miss interpreted due to the Schisis on her right optic nerve that was found through diagnostic tests taken at the UPMC Eye Center. Various Scans confirmed that she had a normal nerve head except for the Schisis. Apparently Mary did have narrow angle glaucoma that was eventually treated with Iridotomy surgeries.

Mary was able to get off all medications in 2008 after working this past three years with Doctor Schuman at the UPMC Eye Center in Pittsburgh, PA.  

Note: I asked Doctor Mark Sibley, M.D.,F.A.C.S., Board Certified Ophthalmologist and Medical Director of the Florida Eye Center what effect glaucoma eye drops have on a patient that has gone through SLT surgery and how does a patient stop taking the drugs if the SLT surgery was successful. He stated that once the drains are cleaned up through SLT surgery, and the response to the SLT surgery is known, the patient can immediately stop the medications if the drains are working properly as indicated by lower acceptable pressure. He clarified this point by stating that the drains can only be cleaned up to what they have the potential for. Furthermore, “if you give a person with open drains Glaucoma medications the person with open drains has virtually no eye pressure lowering because the drains are already open. When you successfully open the drains with SLT surgery the drains take over and the eye drops become unnecessary, dangerous, and an expense that can be stopped.”

I also asked Doctor Sibley if the side effects from eye drop drugs are reversible when the drugs are stopped. Doctor Sibley said, “when you stop the medications the side effects go away.” 

Mary’s apparent erratic high pressure has caused the doctors the most concern. After much research, self tests with the Proview monitor, and evaluation we believe that her erratic IOP readings in the doctor’s office may have been an anomaly all along predicated on other factors specifically:

• White coat hypertension and stress

My wife has what is referred to as white coat blood pressure. Anytime she goes to a doctor’s office her blood pressure elevates significantly. She monitors her blood pressure daily and it is normal except when she goes to the doctor’s office. Research has indicated that IOP is positively related with systemic blood pressure as noted in the Singapore Medical Journal. We check her IOP immediately before going to the doctor’s office and it is elevated several points from her normal readings. At the doctor’s office it increases more. Her IOP stays elevated for several days after her visit until she calms down. Then it goes back down to normal levels. We concurrently monitor her blood pressure and it correlates with her IOP.   

Note: We also suspect that Mary may have negative reactions to the drug Fluress that is used to numb the eye prior to taking IOP readings.

• Cornea thickness

Pachymetry test. Thicker corneas give high false IOP readings on the Goldmann Tonometer pressure test set. Mary’s corneas measured R 561 and L 592 which equates to IOP adjustments of -1 mmHg in her right eye and -4 mmHG in her left eye from the Goldman readings. The Duke University Eye Center publishes an IOP correctional values chart  for the Goldmann Tonometer. I obtained a copy of the chart from my optometrist.

• Exercise

The University of Maryland states on their web site under patient articles that, “Studies indicate that glaucoma patients who exercise regularly (at least three times a week) can reduce IOP by an average of 20%. If they stop exercising for more than two weeks, pressure increased again. In one study, those who walked briskly four times a week for 40 minutes were able to go off their medications.”  The web site www.healingtheeye.com reports, “Areobic exercise has been shown to reduce intraocular pressure by 4.6 mmHg when compared to sedentary glaucoma patients.” My wife walks for 30 minutes most days on a treadmill. This along with other things appear to be decreasing her pressure.

• Caffeine

Healthnotes Newswire reported on June 27, 2002 that caffeine increases intraocular pressure (IOP). The study measured an IOP increase of between 2 to 3 mmHg 60 minutes after drinking one 7 ounce cup of regular coffee containing 180 mg of caffeine. I found several articles on the effect of caffeine on IOP. Mary has decreased her consumption of caffeinated pop and dark chocolate which also has high levels of caffeine.  

NOTE: There are reports that IOP measurements are affected by drinking coffee, water, or alcohol before IOP readings.

Excerpt from my retirement journal: Since retiring, I dramatically increased my physical activities. However, it appeared that the more I exercised the worse my arrhythmia became and I was having a hard time sleeping.  I couldn’t determine what was triggering the attacks. 

One of the known triggers for this condition is caffeine and fortunately I watched 20/20 last week when they featured decaffeinated coffee. Their research uncovered that a third of the decaffeinated coffee purchased at coffee shops across the county was not decaffeinated at all. Some cups had as much as 90 milligrams of caffeine, about 80 mgs more that the typical cup of decaf!!! Since retiring I stopped at Starbucks daily and when my A-Fib started acting up I went to 100% decaf with no change in condition. After the 20/20 show I stopped buying coffee all together and low and behold the attacks stopped almost immediately. Live and learn, not everything advertised is what it is cracked up to be.

• Water intake

It is reported on the University of Maryland Medical web site (http://www.umm.edu) that fluid intake in large amounts can cause eye pressure increase. They report, “Drinking large amounts (a quart or more) of any liquid within a short time, about half and hour, appears to increase pressure. Patients with glaucoma should have plenty of fluids, but they should drink them in small amounts over the course of a day.”

• Smoking

Doctor Krondit at www.healingtheeye.com states, “Studies show that there is a 2.9 increase in the risk in developing glaucoma in smokers. While smoking, each cigarette can raise the IOP by 5.0 mmHg or more. Nicotine has been shown to reduce retinal blood flow by 16%.” Other studies recommend that glaucoma patients avoid second hand smoke as well as it to can raise IOP.

NOTE: Mary is currently taking Lumigan, a Prostaglandin analogues. This drug causes upper respiratory problems and she has to avoid smoke of all types including smoke from frying foods. This drug also causes complications for menopausal women.

• Vitamin and mineral supplements

There are many studies on the effects of vitamins and mineral supplements. The web site www.alternative-medicine-and-health.com suggest the following supplements: 

Vitamin A: 10,000 I.U. per day
Vitamin C: 1,000 to 3,000 mg. daily, in divided doses
Vitamin E: 400 I.U. daily
Chromium: 100 mcg. Of trivalent  chromium 2 times daily
Zinc: 50 mg a day
Fish oil: 1000 mg 3 times daily of MaxEPA
Rutin: 50 mg 3 times daily 

NOTE: You can get Rutin from green tea. Meat and chicken is rich in Zinc, and chromium is abundant in vegetables including broccoli. Mary has many allergies and was hesitant to take these larger doses. She started taking a daily multiple vitamin several months ago along with 200 I.U of vitamin E and 500 I.U of vitamin C daily. Since stating this vitamin regime her IOP has dropped in both eyes. This drop may not be fully attributed to the vitamin intake. She also exercises and has made other life style changes that may have reduced her IOP.  

• Menopause

A study by the Singapore Medical Journal states, “In recent years, it has been noted that intraocular pressure is a dynamic function and is subjected to many influences both acutely and over the long term.” Menopause is a significant life cycle that Mary and I believe impacts IOP and the glaucoma diagnosis significantly. This is especially significant when a woman is prescribed a Prostaglandin such as Lumigan or Xalatan. Further investigation should be made into the efficacy of using these drug on premenopausal and menopausal woman. Prostaglandins cause bleeding and uterus contractions in women. Menopause causes significant hormone fluctuations that also may create IOP fluctuations of and in itself.  

Since many who are diagnosed with glaucoma are older we believe there has been little research on this subject.  

NOTE: If you are going through menopause be forewarned that prostaglandins can prolong and magnify menopausal symptoms significantly. 

Ask Your Doctor These Questions / Suggestions

There are many forms of Glaucoma and your treatment may be considerably different from what my wife experienced. Everyone over 40 should have an annual eye exam and be tested for Glaucoma and other eye diseases.  

Patients need to be aware of the many factors that affect IOP before starting treatment or agreeing to surgery. Mary and I recommend that before starting drugs or having surgeries get a second opinion and ask your doctor these questions: 

1. What type of Glaucoma do I have?

         POAG - Primary Open Angle, Narrow Angle, or other type?

2. What are my cornea thicknesses?

         Do you adjust your Goldmann Tonometer IOP readings for cornea thicknesses? If    not, do you have a PASCAL DCT tonometer for IOP checks?

3. Is there optic nerve damage?

4. Do I need an OCT,  GDX, or HRT Scan,  or an OTIScan Ultrasound?  The OTIScan is an Ultrarsound of the eye that  checks eye structure and for the conditions such as pupillary block and plateau iris. The other low level laser scans look at the optic nerve fibers and structure. I consider these tests necessary before proceeding with treatment. This may seem a matter of fact. However, not all doctors have access to the very expensive test equipment required to thoroughly evaluate your eyes. Some doctors may be hesitant to refer you to other offices. Insist on a referral if these tests can’t be performed at their office. 

5. Our opinion is that prior to taking medications you should get a second opinion and have at a minimum a "Visual Field Test" and the OCT or equivalent laser scan. Many of the older visual field machines are not as accurate as the newer units. The newer units have self checks built in that void the exam if the patient doesn't follow instructions to a tee.

VISUAL FIELD TEST DISCUSSION - Since the visual field test is so critical to diagnosis and treatment it is imperative that it be done correctly. The technician that administers the test should stay with you throughout the entire exam to remind you to stay focused on the center light and not to look for the lights. Basically, you look straight ahead and when you first see the light in your peripheral vision you press a button. This is repeated over and over again until they map the entire eye. Patients tend to get concerned when they feel it is taking too long for the light to reappear so they start to look for it and it flaws the test. Patients should be reminded that everyone has a natural blind spot in each eye and at times it will take awhile for you to see the light again. Actually, if the test doesn't map a blind spot the test was not done properly.

5. If drugs are prescribed, ask the doctor if the SLT Laser Treatment would accomplish the same thing? You want to avoid medications if at all possible.

6. If your pressure is higher than normal ask the doctor if you could be ocular hypertensive? The "Ocular Hypertensive Treatment Study" OHTS  includes many helpful clues about this condition. You can uncover volumes of information by doing a Google or Yahoo search on these key words.

NOTE: There is also a condition called "Low Tension Glaucoma" where optic nerve damage occurs even with very low IOP readings.

SUGGESTION: Mary was always concerned that her IOP pressure was always high until we purchased the PROVIEW Home Monitor. We discovered that her IOP dropped substantially after leaving the doctor's office and remained relatively constant + or - 1 digit on the Proview scale morning to night. The day of her office visit the Proview readings would go up at much as 2 mmHg or higher. Many doctors don't trust the Proview but if you calculate the correction factors as noted earlier they do provide a good relative measure of your daily IOP. Mary takes her Proview readings several times a day and it only takes a minute to take each reading. The unit looks like a short fat pencil.

7. If you are experiencing IOP fluctuations, erratic or high IOP readings with the Goldmann Tonometer, ask the Doctor to check your pressure with the PASCAL DCT tonometer. If they don't have one locate a doctor in your area that has one and have your IOP read on their unit. You will be able to compare the readings to your doctor's GAT readings. The PASCAL unit takes into consideration the biomechanics of the eye and their readings are not effected by cornea thickness. They also give you readings for Ocular Pulse Amplitude and pulse rate. I believe these two additional PASCAL readings help the doctor better understand your case, especially if you are nervous and suffer from White Coat Hypertension like my wife does. The PASCAL is fairly new. However, the research I have read was highly favorable and many now believe it will become the new "GOLD STANDARD" for IOP readings.

8. Start a journal coincident with your first doctor's visit and keep it updated. Explore the diagnosis and condition online and locate as much information as possible to help you understand your condition and to help your doctors treat you. Tell your doctors all of your medical concerns no matter how insignificant you may think it is and certainly let them know if you are going through menopause, have allergies, or have other problems. 

We will continue to post updates to this journal as we progress from this point on and hope that you have found this information helpful. If you would like to comment on this article or its contents you can send an email message to ddamp@aol.com. Either my wife or I will respond and if your information will be helpful to others we will post it on this forum.   

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