The eye update

It’s been a while since I’ve written about my right eye. I just saw the local ophthalmologist yesterday for a work up, so now seems like a good time to do it. After seeing the doc I felt like I needed a big warm hug, which is a clue to me that my brain is trying to process through the possibilities we discussed. Writing usually helps me with the process, so here goes.

Way back when I was first diagnosed with I.C.E. Syndrome in October 2015, I thought I would need to have eye surgery within just a few months. In my usual, efficient mind-set, I was thinking I could just slot it in while I was recovering from my hysterectomy in December 2015 and not have to take any additional time off than the 6 weeks I was already scheduled to be out on short-term disability.

That didn’t happen, and in hind sight it was a good thing for several reasons. While it took me many months to adjust to the challenges caused by the corneal swelling and to find a medical regime that worked to keep my intraocular pressure (IOP) in the target range, I probably couldn’t have dealt with another health issue at the time. As it turned out, it was better for me to focus on getting my hormone replacement right, and to deal with the gut issues that kept taking me out of commission.

In the intervening time, I’ve been (mostly) quietly dealing with the progression of this eye disease. There are two doctors involved in my treatment: a local ophthalmologist, and another one in San Francisco who is a glaucoma specialist. The local eye doc is wonderful and can medically manage my condition; the specialist is primarily a surgeon and gets final say on when I’m at a point where surgical intervention is necessary, and which surgical procedure would be best for me.

Once I got the all-clear from the local eye doc, I had an optometry exam and got a new prescription and progressive eyeglasses. That’s helped a bit. One of my challenges, however, can’t be helped by eye gear very much.

My pupil is distorted in my right eye and can’t adjust as much as needed to changing light conditions. This means that moving from darker to lighter environments (or vice versa) is uncomfortable for me. Anytime I’m in brighter light conditions, I feel like my eye is being bombarded with light. (Because it is.) If you’ve ever walked into bright sunlight after being in a dark movie theater and had that “white blindness” feeling, that’s close to what I experience when I move from a dim indoors to outdoors, even on gloomy days. I got the types of lenses that darken in the sun in my eyeglasses, but that can’t take the place of a pupil that can properly dilate. Moving in the opposite direction (light to dark) has its own set of complications.

Cosmetically, the pupil distortion is visible, too, so I sometimes refer to my right eye somewhat jokingly as my “goat eye.” Not all people with I.C.E. Syndrome have visible changes in their iris, but the type of disease I have (Cogan-Reese) does have that result. The iris in my right eye looks darker and more blotchy. I have one dark brown spot in it, which my local eye doc says is actually not eye pigment, but is the actual muscle in my eye; the iris pigment has been completely worn away in that area.

I’m currently on three different eye drops (actually, it’s four meds since one drop is two medications combined in one) and my local eye doc tells me that I’m nearly at the end of the medical management options currently available. I’m going to try using one of the drops three times a day instead of twice a day to see if it reduces the IOP a bit, but that’s the absolute last option open to me medically. None of these meds are cheap, and it’s my bad luck the one he’s suggesting I increase to three times a day is the one that is the most expensive. It was $92 to refill it last time, and that’s with my insurance coverage. Yikes! (Yes, I did ask about a generic option and there is one, so I may start experimenting with it when my next refill is due.)

I had a thorough work up yesterday, including a visual field test and imaging of the optic nerve in both eyes. I’ve had the same tests done in October 2015 and October 2016, so we now have a chart showing how well my vision has been over time. It’s not terrible, but it’s trending downwards. My glaucoma is progressing, and since I’m still “fairly young” (just a few months away from 50) the doctor’s goal is to slow the progression as much as possible. He defers to the glaucoma specialist on making the decision about when to have surgery, but when he sends his notes and the summary of my tests, my local eye doc is clearly going to be suggesting surgical intervention at this point.

The eye doc and I talked over a few other issues and ideas yesterday, too. I asked about other treatments that would get straight to the root of the issue: the abnormal endothelial cells on my cornea which are causing the drainage issues in my eye (and, therefore, the glaucoma). He allowed that while there are surgeries to replace the endothelium, that’s not something that he sees as an option for me, but he’d ask the glaucoma specialist to weigh in.

Another option that the glaucoma doc will need to advise me on is whether it may be worthwhile to try anti-viral medications. While there hasn’t been a lot of research into this disease due to it being rare, some studies have suggested that EBV or HSV may play a role. Local eye doc says these are viruses that are present in most people, however it may be that sampling the eye fluid for them and then treatment with an anti-viral medication is something I can ask the glaucoma doc about.

One more issue the local doc wants the glaucoma specialist to express an opinion on is whether I should start using some eye drops in my left eye, too. I don’t have I.C.E. syndrome in that eye, nor do I have issues with the drainage angles, but I am showing some peripheral vision loss in it. Earlier this year he explained to me that the”cup to disc ratio” in my left eye suggests I’m more likely to develop glaucoma as I age, and since I’m already slowly going blind in my right eye, preserving the vision in my left eye as much as possible is his goal.

I see the glaucoma specialist in about a month, so I’ll know more about next steps then. In the meantime, I’m doing my best to deal with all this info and that I’m likely facing yet another surgery this year. I medicated myself with pizza and wine last night, but I’m thinking that I may need to find a local therapist soon. I’ve been doing my best to remain positive and resilient through all the health issues I’ve faced in the past three years, but sometimes it’s necessary to find professional help.

 

 

 

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Health updates

I’m three weeks post-op and feeling pretty good! I still get tired more easily and require extra sleep, but being off work means I can take naps whenever I feel the need.

I have three weeks left on my short term disability leave and am trying not to think about work. Mostly my thinking is about how to find more satisfaction with my work and not about actual projects or business relationships. For now I let the thoughts float by, but don’t try to turn them into anything.

At my two-week check in with the surgeon advised that I could start slowly adding higher fiber foods into my diet. So far I’ve been careful not to add anything with small seeds, nuts, and cabbage-y foods. But eating whole apples and whole grain products (a little whole grain pasta and some whole grain bread) is so satisfying!

Due to the pre-op prep and post-op dietary restrictions I was off all alcohol for more than two weeks. Once I started adding alcohol back in — a drink with dinner most nights — I observed issues with my sleep patterns. The nights where I’ve had beer seem to go OK, but white wine, red wine, and hard liquor lead to me waking up and having trouble going back to sleep. Considering I live in wine country, it’s kind of disappointing that my tolerance for that beverage is not that good. I think I need to just stick to drinking herbal tea most evenings and enjoying a beer maybe once or twice a week.

In two weeks I get to visit the dentist and have two small cavities filled. To me this is a *big deal* since I haven’t had a cavity in more than 40 years. Yes, I have had no cavities since my adult teeth emerged! These two little cavities are in my molars, and the dentist said they likely happened due to me clenching and grinding my teeth at night.

At around 30 I had to start using a mouth guard every night due to pain in my jaws caused by clenching/grinding. I stopped using the mouth guard when I had orthodontia a few years ago and was just using my retainers at night. Since I had no jaw pain I thought perhaps my issues were cleared up. Apparently not. I’ve caused small cracks through a molar on each side of my lower jaw, and that’s where these little cavities have formed. Now I’m back to wearing a mouth guard and will have to deal with fillings for the first time in a very, very long time. Ugh.

At least my bad eye seems to be doing OK lately. My pressure has been stable for months, which means I can keep putting surgery off. I’m also getting used to relying more on my left eye for reading and fine work. Adjusting to not using my right eye for those things was really tough and caused a lot of discomfort and fatigue. I think I move my head a lot when reading now, but maybe that’s just me being self-conscious.

I’ll have a field of vision test next week to check whether I’ve had any more loss of peripheral vision in that eye, and I’m not due to see the glaucoma specialist again until April unless there are problems. I saw the local ophthalmologist last week and he confirmed that there are more visible changes to the eye. I’ve noticed this dark spot in my iris and I didn’t recall it being there before. The doc said that it is caused by the coloration from my iris being “rubbed away” and the eye muscle showing underneath it. I’ve noticed that I’m more sensitive to light changes in that eye, too, and he explained to me why. (I love this local ophthalmologist. He is so great at explaining stuff.) At least my pupil isn’t as distorted as it used to be; it was looking pretty creepy back when my pressure was higher.

How is your health?