"Upset and confused"

I have been a patient of the Sydney Eye Hospital (SEH) since 2005. For all this time I have spent over 5 hours in travelling, plus at least 2-3 hours of waiting at each appointment, without complaint because I believed that as a tertiary level teaching hospital it would offer the latest, state of the art treatment, so long travel times, crowded waiting rooms and long waiting times were an acceptable trade-off.  

SEH is a tertiary-level hospital supposedly providing training for world-class eye care, yet my treatment seems to consist of standing idly by, watching & observing the inexorable decline into blindness, taking IOP (eye pressure) & documenting the decline with retinal scans every 6 months, but doing nothing more. I believe this is not world-class state-of-the-art treatment. I could actually get that from my local optometrist, without the 5 hour round trip to Sydney and 2.5-3 hours spent in the waiting room. To be fair, I was offered surgical treatment at the end of 2017, and scheduled for surgery in early 2018. However, when I expressed my concerns at the risks involved in this surgery, and asked for a minimally invasive surgery which research shows is almost as effective. With only a fraction of the risks of a trabeculectomy, I was told it was not available for public patients at SEH. I became aware that MIGS (minimally invasive glaucoma surgery) has been available at SEH for public patients, for approx 2 years, so when I went for my appointment in late  2018, I expected to be put on the waiting list for this surgery – at last. To my astonishment and deep disappointment, I was told that - we’ll wait until your next appointment to think about it. I was deeply disappointed & frustrated. At my next, appointment early this year, I was again refused MIGS surgery. This denial of sight-saving surgery in the hospital that has treated me for over 10 years is devastatingly disappointing and depressing, and anxiety-provoking. 

This treatment plan (or I believe, lack thereof) is incomprehensible to me. In 2008, my ophthalmologist who was the head of the Ophthalmology Department at a US medical school, told me that due to the severity of the damage to my vision, and my life expectancy, it was critical to achieve an IOP of 9, to minimize the progression of vision loss. He said it was imperative to do everything possible to avoid a catastrophic loss of vision (his words), given my age & life expectancy. He planned to do SLT (selective laser trabeculoplasty) and if that did not achieve the desired IOP, he would implant a stent or shunt. He said the added benefit of that surgery was that the IOP might be reduced to a level that would enable one of the toxic eye drops to be eliminated. At the time, I thought it was a rather odd thing that he referred to toxic eye drops. However, the meaning became clear to me last year when I was scheduled for a trabeculectomy, and began to read about the numerous risk factors for complications, which included dose-dependent occular surface damage caused by the preservative in glaucoma eye drops. The longer one was using these drops, the more likely the damage & the more severe, and the more it was associated with complications in a trabeculectomy. As I sit typing this, I have my left eye shut, as I do at numerous times throughout the day due to the pain.

I had received maximum SLT several years ago. In late 2017, my IOP was unacceptably high, yet I was still not scheduled for surgical intervention of any kind. I was put on a new combination eye drop, one of the components being a medication that I had previously been unable to tolerate – this episode was the subject of a previous Patient Opinion as I was subject to a long period without a prescription for eye drops. As a result of being unable to tolerate the combination drops – despite having been advised for years that daily use of eye drops was vital – it seemed a contradiction that it was OK to let me go months without an appointment for a treatment to replace the one that could not be tolerated.

At my next appointment in early 2018, it was only then that the SEH decided to take action in the form of surgery. The specialist spent time advising me of the risks of a trabeculectomy, and then gave me the paperwork to have it scheduled. When I went home and began researching this surgery, I considered that the risks were unacceptable. Now, it seems that I am being punished and denied the state-of-the-art iStent or the XEN stent, which has results that are close to those of the trabeculectomy, but with a fraction of the risks - and no explanation as to why others are considered worthy of this surgery, but I am not. .

I informed the specialist that I was planning to travel overseas this year and would be gone for a considerable time. She asked if I had made the booking, and I responded that I had not. I deliberately did not make a booking because I was sure that SEH would schedule me for MIGS, and this was more important than my booking. My daughter is expecting her first child later this year and I had hoped to be there and remain after, and would not be able to readily obtain ophthalmology care. The treating specialist advised that since I had a narrow angle it could be a little difficult, and it would make the MIGS surgery easier if I were to have cataract surgery at the same time. However, she decided that my cataracts (I feel possibly caused by over 13 years of toxic preservative in my eye drops) were not severe enough at this time to justify putting me on the waiting list. So, the next time I can even be considered for this sight-saving surgery will be at my appointment in December 2019 - at which time, I would join a waiting list for cataract surgery that is approximately 1 year long, before being able to have the sight-saving MIGS iStent or XEN stent. This indifference to the loss of sight by waiting for years - at least 12-13 years from when the US specialist thought this should be done, and at least 3 years from the time that the SEH specialist thought things were so serious that I needed the very drastic trabeculectomy.

If the trabeculectomy was justified (which in my opinion, of course it was), in early 2018, then how can postponing MIGS surgery another 3 years be justified on clinical grounds? Because there’s a narrow angle? That could be helped by cataract surgery? I am quite depressed and distraught at the delay in my treatment and it seems as if it could be a punitive response to refusing the trabeculectomy. They are happy for me to go privately to get this done, even though that would present a severe financial hardship. Although this could be a valuable teaching experience for registrars, given the narrow angle, there is seemingly an indifference to the progressive loss of my vision – a progression that is to be expected, but which is also expected to be slowed by MIGS (as my US specialist recommended in 2008, prior to my return home to Australia).

I would like to know why other people who appear to me to have less pressing need for the MIGS surgery have already received this, and yet I feel I am being shunted off for yet another year, before even going on the waiting list.