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2.8 years ago
Daywalker
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240
@_245
I was diagnosed with early glaucoma 3.5 months ago (October 2021) at the age of 40. It’s the regular primary open angle. My highest pressures were 23 OD 22 OS before diagnosis and I had some damage already in my Humphrey Visual Field test (but still enough to be considered early glaucoma).
All the old stats about glaucoma blindness are referring to the past data. There’s no stats for someone like me diagnosed recently in 2021 because the future has not been written and there is much hope ahead.
Therefore, in this day and age and with the expectation of another 40, 50, 60 years of life for me - God willing - do I really even need to worry about complete (bilateral) blindness in my lifetime?
I live in the US which is a developed country.
How come some people still go blind despite attending all appointments and following their glaucoma specialist’s treatment plan to the tee?
Patient compliance is a big problem. That's why I made sure my earlier answer specifically said, "...and you take your drops, etc." To keep your risk of blindness very low, you have to do all the things you are supposed to do. Not all glaucoma patients do that. Some don't even take their eye drops except right before their doctor appointments. (This is sometimes due to the side effects -- and this is where a community like FitEyes can be helpful. We can educate patients that you do not have to suffer with drops that cause severe side effects.)
Lack of daily IOP monitoring in real life is another huge problem. When home blood glucose monitoring became widely available for diabetes patients, it revolutionized their quality of life. The horrible side effects of diabetes were dramatically reduced by home blood glucose monitoring. We need self-tonometry to become as universal in glaucoma management.
There are some patients that are very compliant and have received many forms of treatment (drops, laser, surgery) and still progress to blindness. I am basing this on posts on other Glaucoma Forums on Facebook. I was only recently diagnosed 4 months ago, and it’s not clear if my glaucoma is stable or not.
But is it possible some patients are just non-responders? So whatever treatment is thrown at them, they still progress to blindness? Is there any data/evidence to suggest that?
I'll share a personal note. Before he retired last year, I was treated by glaucoma special Dr. Robert Ritch. He always told his patients that he did not allow anyone to go blind. I spoke with many of his patients and I know that Dr. Ritch always came up with a solution for them.
He also trained many other glaucoma specialists. One of his former students is my doctor now.
The difference between a fellowship-trained glaucoma specialist and a general ophthalmologist is night and day. My point is, find a fellowship-trained glaucoma specialist as I said in my original answer. If you are extremely worried, find the right fellowship-trained glaucoma specialist who has an attitude like Dr. Ritch -- find a specialist who simply will not let you go blind.
I am not aware of blindness statistics that break down the compliance, the level of care received by individual glaucoma patients and the expertise of their physician (e.g., generalist vs specialist). However, my own experience after 16 years of managing the FitEyes community is that patients who are treated by fellowship-trained glaucoma specialists, who do self-tonometry and who work out a treatment plan with their doctor and follow it, do not end up blind.
My answer is simply, "No." If you are not responding well and your doctor doesn't have a better plan, you need a new doctor.
Nope.
None that I am personally aware of. However, I do not seek out that kind of evidence. Even if there are such rare cases, I could not possibly know all the facts that contributed to such an outcome, and I certainly would not conclude that I'm going to end up with the same outcome.
In fact, I know a person who was diagnosed as blind from birth due to glaucoma and cataracts and that person can now see. His name is Myer Schneider. I look for examples like that.
I know several FitEyes members who likely would have ended up blind, but self-tonometry gave them sufficient early warnings and saved their sight. One person came home from work on a Friday, and was expecting a normal weekend. However, he checked his IOP, just like he did every day. On this day, his IOP was near 50 mmHg. That's an emergency. He had emergency surgery that weekend. Without his tonometer at home, he almost certainly would have been blind. But thanks to home monitoring his eyesight is fine today. That's why I suggested in a previous comment:
Each of us can either focus on every possibly negative outcome and let it slowly destroy us, or we can choose to be empowered and help create better outcomes for ourselves. There are lots and lots and lots of things you can do to improve your own health, including the health of your eyes. Self-tonometry is one. Using a fellowship-trained glaucoma specialist is another. It appears dietary supplements (such as vitamin B3) are yet another. Stress management is important too. We have viable options for increasing positive health outcomes. That's what FitEyes is all about.
Check out some of the FitEyes blog posts here:
Community | FitEyes.com
I agree that the chance of not having useful vision in at least one eye throughout life is highly unlikely with regular conscientious treatment. The vast majority of types of glaucoma are highly responsive to treatment. There are miniscule exceptions and progression, however, is possible for some despite drops, laser surgery, trabeculectomy, gel stent, and complete compliance with pressure lowering drops. If there is going to be progression, it will be much slower by following recommendations. I was diagnosed 20 years ago with normotensive glaucoma in my 40`s and have had it over 20 years. My well-versed glaucoma specialist says he is perplexed as to why I continued to progress. This is despite the various surgeries, stents, and of course, 20 years of compliance with the appropriate drops.
I have 33% of my fields left now but happily, it has truly plateaued the last 2 years. I suspect that a big reason for this though is that I'm a poster child for Flammer syndrome with vascular dysregulation. Something that seems to be getting a little more attention in the literature lately. So..I think it is plateaued now because evening salt intake is up to minimize nighttime low blood pressure and plenty of fluids even if that means getting up in the middle of the night. (If one suspects Flammers and is underweight, it helps a lot to try and put on a few pounds too). I now take a lot of oral supplements like others here. If the limit was 4 supplements, I'd continue the niacinamide (NOT niacin), taurine, magnesium, and pyruvate. I honestly believe I've recovered a few more 'pixels' (.. not supposed to happen..) and colors are more vivid since being on these particular 4 supplements the last 6 months. Totally anecdotal I know but the scientific literature is encouraging about these. Sorry, so verbose, but bottom line, it is extremely unlikely to become blind if following treatment.
Thank you for your comment. Who put you on to those supplements? Was that your own research or your ophthalmologist's recommendation?
That's good to hear. Thank you for sharing. I would be interested in hearing more of your story if you want to share it in the chatter section (such as which surgeries, what your peak IOP is at night, etc.). Best wishes to you and thanks for being part of the FitEyes community.
Greev,. What brand and strength of Pyruvate do you use?
Boo, I have been taking Calcium Pyruvate 750 mg capsules three times a day. It's been the Best Naturals brand so far. I started slowly to avoid any intolerance. Addition of pyruvate was on my own, but my doctor knows and approves. The impetus was articles like this one.. The link is odd but it enables you to see the whole article if desired instead of just the abstract. https://www.researchgate.net/publication/356366542_Nicotinamide_and_Pyruvate_for_Neuroenhancement_in_Open-Angle_Glaucoma_A_Phase_2_Randomized_Clinical_Trial