So yesterday I went back to UCSF to see my surgeon, Stephen D. McLeod, MD. I told Dr. McLeod that the headaches are becoming unmanageable, and that I am starting to wake up at 2 or 3am due to headaches. I suspect it's because I'm taking the steroid drops every 4 hours to control the internal inflammation, and when I'm sleeping it's a longer stretch of time without the medication.
Dr. McLeod said the inflammation is still considerable, and he wants my inflammation to reduce before letting me wear contacts (the risk of infection is too high because the contact can breed infection on the surface of my eye), and has to taper me off the drops first. This presents a challenge because I have to manage the headaches from being legally blind in the eye. You may recall that vision of 20/200 is considered legally blind if uncorrected, and mine is 20/400 in my new eye without a corrective lens. According to both Dr. McLeod and Dr. Casey, I cannot wear glasses as my retinal plane doesn't accommodate being able to see with glasses, only contacts.
Since my eye is still inflamed considerably, I will be legally blind in the eye for the next 3 weeks or so. This means I will be on 4x/day this week (10/14-10/21), 3x/day next week (10/21-10/28), 2x/day the following week (10/28-11/04), 1x/day the following week (11/4-11/11). I cannot wear my contact lens in my new eye until I am doing the drops only 2x/day. Even when I do start wearing the contact again, I have to wait a couple of hours both before and after the drops before putting the contact in to assure I don't get an infection. Dr. McLeod also mentioned that when I start tapering from 4-3 drops I will have to pay close attention to see if the tapering works; my eye may need the drops even longer. Let's hope I can taper off sooner rather than later.
Dr. McLeod doesn’t prescribe pain killers, so he recommended I see a neurologist to manage the pain from not wearing a contact in my new eye. It is possible my normal physician may help with meds, however he will likely want to refer me to a neurologist, too. Hopefully I can find some solution to this pain; I'm taking at least 3 ibuprofen several times a day, and it's not always touching the pain. Fortunately I only have to manage the pain for the next month or so (assuming the tapering off the steroids goes as planned), however it's really bad and seems to be getting worse.
Onward & upward!