My Suspect Glaucoma Diagnosis

By | September 5, 2015

Glaucoma EyeBeing A Glaucoma Suspect

I have unusual eyes. I’d like to tell you it’s because they’re so beautiful, or because you can see my soul in my eyes, but I have special eyes because I have an unusual glaucoma diagnosis. I am losing my sight very slowly to something that looks, swims and quacks like glaucoma, but it seems to walk a bit more like a heart problem, so my diagnosis remains “glaucoma suspect”.

Since my optometrist first noticed something a bit strange ten years ago I’ve met dozens of doctors, optometrists, ophthalmologists and their consulting pals. By and large they are a friendly bunch, and I’m moving closer to a firm diagnosis of glaucoma, but they always qualify their glaucoma diagnosis with words like “idiopathic” which is doctor-speak for “I don’t know”.

I’ve spoken to a couple of cardiologists and a handful of neurologists along the way. It seems my heart is fine, and so is my brain, but sometimes they don’t talk to each other in the way they should and that may or may not cause me to lose tiny amounts of sight. It does cause me to faint in interesting ways, which can cause people to think maybe I’m epileptic, or in a couple of worrying incidents, dead, but I’m not, and I recover, Lazarus style, with no obvious damage, but with tiny amounts of irreparable damage to my optic nerve.

Being A Good Glaucoma Patient

Like anyone with unusual symptoms and a difficult diagnosis, I’ve worked through a few doctors who have referred me onward and upwards. The usual explanation is “This is a complicated area, it’s a 50:50 call, I’d like to refer you to colleague with more experience”.

My current glaucoma doctor is a specialist, and a professor, he’s told me I’m a great patient. I have unusual symptoms, which are intellectually challenging, which I guess is nice for him, and he gets to present my case at conference in sunny places.

I’m a patient with patience, which is good at a teaching hospital, as I’m happy to let students and other doctors look at my eye and carry out tests, it may not help me, but it could help other patients in the future.

I’m a compliant patient. I take my eye drops every day, and I attend all my appointments, undergoing all the required tests. The most common reason for people who have been diagnosed with glaucoma to lose their sight is that they don’t comply, and they stop taking medication. This is often because you can’t see any difference, and meds are expensive, but I really don’t want to lose more sight than I have to.

Glaucoma: What Every Patient Should Know: A  Guide from Dr. Harry Quigley

Learning About My Glaucoma

I was surprised when he told me that I was a great patient because I asked so many questions. I’d assumed that my constant questioning, and double checking, was annoying, but no. Asking questions and being informed about my condition makes it easier for my doctor to work with me to make the best decisions for my health.

We’re currently deciding whether (or when) I should have trabeculectomy surgery. It’s a major undertaking, even though it’s a tiny operation, with lots of risks, unusually the risk level is higher with younger people. Being well informed means I can partake in the discussion and make a sensible choice.

This book is a good way to get yourself informed about your glaucoma diagnosis, and to be a better patient.

When Was Your Last Eye Test?

You can’t tell if you have glaucoma. Like a frog dropped in cold water that is gradually brought to the boil (don’t try this at home kids) the vision loss is so slow that by the time you notice something is wrong, you will have already lost significant vision.

Regular eye tests are the only way to tell, and once you have a glaucoma diagnosis, or even a glaucoma suspect diagnosis, you can start to protect your vision and prevent further eye loss.

Glaucoma Suspect
Glaucoma Suspect

My Glaucoma Medication

I take a drop on Latanoprost in my right eye every day. Pfizer make a version called Xalatan, but it is available as a generic, which may be cheaper. Until recently it has to be kept refrigerated before use, but the latest version doesn’t which is much more convenient.

It works by reducing the pressure in my eye, and therefore the pressure on my optic nerve. For me it’s working pretty well. There are other meds you can move onto if Latanoprost doesn’t reduce your eye pressure.

The most visible side effect is that over time it makes your eyes turn brown, and it makes your eyelashes grow. I could take the drug in my good eye too, to balance the effect, but I don’t want to take unnecessary meds.

At some point I may need to consider surgery, but with one perfectly good eye, and slow loss in my bad eye, the risks of surgery outweigh the benefits for me right now, but if loss increases, I may reconsider.

Steps I’m Taking to Minimize Glaucoma Damage

Glaucoma can’t be cured and lost vision can’t be restored at the moment. There are some fascinating stem cell research projects underway, but even if they work, they’ll likely be too late for me by the time all the required clinical testing has taken place.

Alongside the eye drops I’m prescribed, my doctor recommends staying a healthy weight, not smoking, getting regular exercise, eating healthily and drinking moderately (seriously, who has a doctor who doesn’t recommend those things?). I’m happy to commend all of those to you too, and I am not a doctor. Before taking any vitamins or supplements talk to your doctor.

He also recommended a good multivitamin with ACE. There’s a lot of research going into vitamin therapy for eye health. Certainly for people with different eye conditions there’s evidence to show it can help, so if you have Macular Degeneration, or if someone in you family does, then talk to your doctor about what vitamins are right for you. The link is less clear for glaucoma, but again, my doctor suggested a multivitamin with ACE would be good for me, and as I live in England, ensuring I had one with 100% RDA vitamin D was important too

My doctor recommended Ginseng and Ginkgo. Whilst he was careful to point out that they can’t reverse any damage, and there are not yet enough studies to demonstrate that they will help to fend off future damage, there’s enough to indicate that they will probably do more good than harm in helping to maintain good blood flow to my optic nerve, which is right at the end of the circulatory system, so any slowdowns or blockages affect it first as it’s the end of the line.

 

Glaucoma Surgery

The next step for me will likely be a trabeculectomy. Right now I’m postponing that. Because the success of the operation depends in part on the eye not healing properly, the risk of it going wrong is higher in younger people with strong immune systems and ability to repair. I’m just too healthy to risk the surgery.

I cannot explain the soundtrack, there’s something oddly “Clockwork Orange” about the whole thing.

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