Source
r/Glaucoma•
first52

How can I have glaucoma damage when no doctor diagnoses it?

Note: Dad had glaucoma and glaucoma blindness.

I had very bad pains in my eyes in the early 2000's, so bad I went to the emergency room. I had Retinopathy of Prematurity after birth and remained monocular due to low vision and a bundle of blood vessels in one eye so no risks were taken. I went to a glaucoma specialist with all kinds of credentials who diagnosed glaucoma. My pressure varied wildly, even on medication and then specialist saw me every four months with extensive yearly testing.

When I left that doctor and went to a less well-trained opthalmologist, he denied I had glaucoma and accused me of using the prior doctor to qualify for a medical marijuana card. Horrible scene. BTW, I had a card for chronic pain and migraines, not glaucoma.

I moved to New Mexico which has very few specialists and most eye doctors are DOs. Four different DOs reporting to full MDs have said I have no signs of glaucoma. I finally bumped into a DO who recognized ROP in one eye only so I stick with her. None of these professionals would let me take Lexapro.

During the pandemic I was truly locked down and couldn't leave isolation. I noticed a blur in my good eye. Thought I was imagining it at first but finally called The doctor and pleaded to get back on meds. She thought it would do no harm and it shut me up, so I got it.

Now I've had tests to determine why this blur and it comes back as glaucoma blindness. When I asked how that could be the case as she had told me it was physically impossible that I had glaucoma - nerves too thick and other indicators - and she just told me the tests don't lie. Still insists I have no glaucoma but will keep prescribing Lexapro for now.

How do I explain this to myself? I've always been annoyed that none of these DOs would access the Denver specialist's ton of records taken over 15 years. I'm accused of lying but a specialist tested regularly and my pressure vacillates between 13 and 20 on Lexapro.

This is crazy-making and I seem to be a problem patient. If I'm nuts and making this all up, my dad's history and 15 years of successful treatment confuses me. Is there's a rare form of glaucoma that my DOs may not be catching?

I'm pretty scared.

During the worst part of the pandemic I notice

Posted Feb 18, 2023, 5:47 PM UTC

112
oylaura•

Forgive me if you've already done this, but have you gone to this site? https://glaucoma.org/

The foundation for glaucoma research may have some ideas for you.

It might be a good place to start. How frustrating this must be, to see your vision failing and nobody willing to fight for you. I'm so sorry this is happening, and frustrated on your behalf.

You might also check local colleges or universities to see if they have medical schools, or if they can recommend any resources for you. It would be optimal if you could find a teaching hospital or someplace with an ophthalmological specialty.

It seems that the only person willing to fight for you right now is you. You need to be your own advocate, push back to your insurance, assuming you have it.

Please keep checking back for more comments. This is a very caring community, and I'm hopeful that we can put our heads together and come up with something that will help you.

There's a lot to be said for not taking no for an answer. This is an important battle and it's very much worth fighting. We're all on your side.

Post back and let us know how you're doing please?

4
first52OP•

Thank you for your kindness. I'm going to see if I missed anything on the glaucoma site. It's been a bit.

1
cropcomb2•

lexapro's an anti-depressant -should have NO impact on eyepressure. That said, since meditation is known to modestly reduce eyepressure, lexapro might help modestly.

​

I went to a glaucoma specialist with all kinds of credentials who diagnosed glaucoma.

Those records are worth applying for a copy imo, you're likely entitled to request them (the office may charge an administration fee).

Now, I gather your present eye doctor(s) assess your OCT scans as showing healthy nerves, and, your Visual Field tests (blinking faint light & clicker) are not showing any 'damage'. That's, unexpected.

I'd be seeing if there were a 2nd glaucoma specialist I could consult (it would be more productive to bring along a copy of your much earlier records, so comparisons can be made). CHANGE in test results over time is invaluable (vs just showing up and getting tested).

To be candid, the better test, OCT scans, may not have been in use at the super duper glaucoma specialist's office some 20 or more years ago, and so retinal photos may have been relied upon (those, can be very 'subjective' to interpret, leading to misdiagnosis). The Visual Field test is 'sloppy', patients have trouble at times using it effectively.

My local glaucoma specialist I saw back in 2013, top of his field for my large Canadian city, did NOT use OCT scanning (I've no clue why, likely set in his ways, I suspect). No clear hint of 'glaucoma' back then, but gotta say I reflect and kinda wonder about that.

2
wyezwunn•

your OCT scans as showing healthy nerves, and, your Visual Field tests (blinking faint light & clicker) are not showing any 'damage'. That's, unexpected.

Is getting OCTs along with Visual Field tests and an ophthalmologist telling me "some people can tolerate high IOP without damage to their optic nerve" the same kind of unexpected you're talking about?

1
cropcomb2•

-the OP has family history of glaucoma

(OP) Now I've had tests to determine why this blur and it comes back as glaucoma blindness.

-perhaps unrelated, but experienced retinopathy

-yet the current opthalmalogist is unconvinced with this OP

(you) Is getting OCTs along with Visual Field tests and an ophthalmologist telling me "some people can tolerate high IOP without damage to their optic nerve" the same kind of unexpected you're talking about?

If you mean that is your experience, sure, though not quite the 'same kind of unexpected': some manage an IOP of 35 yet no glaucoma, only somewhat unexpected as I'm aware that this happens but is not especially common imo (I've yet to see an epidemiological study of the frequency, though).

I suspect with those this is the result of: excellent eye genes and/or a consistently healthy diet. Diet's a proven influence, a good diet can halve your chances of getting glaucoma according to a a 2008 epidemiological survey of black women. Genes are an influence on the likelihood of getting glaucoma, so I think it stands to reason they're likely also in some, an influence on resisting getting it despite high eyepressure.

High eyepressure is not the only cause, though lowering pressure is the only treatment. Someone with excellent optic nerve blood supply for whatever reason (eg. high intra-cranial pressure (ICP), which can offset high IOP), ought to be able to withstand high IOP imo.

2
wyezwunn•

Thank you. Your last two paragraphs are news to me that's also pertinent. I have 1) an excellent diet and 2) a diagnosis of allergic vasculitis that causes my blood pressure to double in doctors' offices that use alcohol-based sanitizers and my BP quickly returns to normal after I breathe fresh air. Not exactly the example you presented, but I plan to use a tonometer to determine if the same kind of change affect my IOP.

FWIW, the ophth I quoted above was also my mother's glaucoma ophth and knew some of my family history of glaucoma, but didn't know about the family member who was misdiagnosed with glaucoma.

2
cropcomb2•

While high BP may raise IOP but it is also apt imo to raise 'perfusion pressure' (the blood's oxygen supply to our retinal cells) which could offset the harmful impact.

If the cause of raised IOP were high BP, that could be of lesser or no concern.

If you've a home tonometer, one use likely valuable would be 'timing' your eyedrops, especially prostaglandins. They've been studied and depending on the patient, are known to take maximum effect within a range of 8-12 hours.

Their most desired impact is at the end of our sleep period (our likely highest daily eyepressure). eg. A tonometer should help pin down whether to use the drops 8, 10 or 12 hours before getting up, getting more value out of that med.

1
Opening_Ask_2948•

and most eye doctors are DOs. Four different DOs reporting to full MDs

do u mean OD or DO? not the same. i think u mean OD.

DO is doctor of osteopathic medicine and is like a full general MD
OD is doctor of optometry also called optometrist

hope you can find a good specialist again.

1
first52OP•

What a mess. Yes, I meant DO. Thanks for the correction.

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Opening_Ask_2948•

yes it is a very confusing mess

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[deleted]•

[deleted]

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