Following an accident in 2004, I lost sight in my left eye and have undergone 38 surgical procedures since then.
Glaucoma developed after that incident. Over the years, I don’t think my eye pressure (IOP) has ever dropped below 28, and it once peaked at 58. (Yes, 58—it was the most intense pain I have ever experienced.)
I have likely tried every glaucoma medication available and experienced every type of surgery. This past February, I was diagnosed with absolute glaucoma, the most severe stage that no longer responds to medicine, which explains that 58 IOP.
I underwent a CPC procedure that failed after about ten weeks. Because of the total vision loss from 2004 and the unbearable, persistent pain, I am now scheduled for a more aggressive surgery: evisceration.
If you are struggling with glaucoma, need some support, or have questions from a patient’s perspective, please feel free to ask.
Take care of yourselves and try to keep your screen brightness low.
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I’m fairly certain that high screen brightness isn’t actually a major contributor to the development of glaucoma.
I personally really value you reaching out. I’ve been living with my diagnosis for over 10 years now.
How frequently do your doctors require you to do a visual field test during your check-ups?
Thank you for sharing your story; I’m so sorry you’ve had such a nightmare experience with all of this. That level of pain is the worst I’ve ever felt too; my highest pressure was 45+, so I can only imagine how 58 felt for you. I noticed in the comments you’ve had treatment in many places; I’m in the UK and I’m a patient at Moorfields in London.
I was only diagnosed in November '23 with refractive glaucoma following a keratoplasty and years of using topical steroids, among other factors. I had chemical burns as an infant and have been having surgeries my whole life as well. However, those were all related to the cornea, stem cells, or lenses, so glaucoma is quite new to me. I’ve been researching it aggressively for the last few months.
My pressure was controlled for a while but then spiked, and I lost a significant amount of peripheral vision. Everything is quite blurry and light-sensitive now. Artificial and natural light are the hardest for me. I ended up taking Cosopt, Latanoprost, Iopidine, and the maximum dose of Diamox—that barely kept my IOP in the high 20s. I had a cyclodiode ablation a week ago and have stopped the Iopidine and Diamox. My pressure has been okay, and the side effects from those two drugs were debilitating. It was a gentle treatment to avoid damaging the new cornea. I’m really hoping it stays stable because more invasive surgery would be very risky for my eye structure and cornea right now.
I still experience dark patches, vision fluctuations, and flashes even when my IOP is low, and I’m not sure if that’s normal or if the optic nerve is still being damaged. My imaging isn’t very clear because the inside of my eye is so cloudy.
I don’t think I have any specific questions, but I really appreciate hearing about others’ experiences and advice. It’s comforting to know I’m not alone in this, even though I obviously wish no one had to deal with it.
What was the accident that led to your vision loss? I was shot in the eye with a BB gun about 20 years ago and had to have cataract surgery to see again. Last year, they diagnosed my left eye with glaucoma, and I’ve lost most of the vision in that eye, which has been terrifying. My pressure hit 50 in that eye, and I had Ahmed valve surgery two months ago. The corner of my eye is still a bit red. Now I’m paranoid that the vision in my right eye will eventually go, and I’m only 35. The doctors say the right eye is healthy, but seeing floaters in it now really freaks me out. Also, the asymmetrical vision—blurry on the left and clear on the right—really messes with my head sometimes. I’m just very anxious about the future of my eyesight. I have a 5-month-old daughter I want to see grow up and many years ahead of me. I have another follow-up in a few weeks, and I’m hoping they can help ease my anxiety regarding these concerns.