Updates

I’m updating the eye stuff first.

At my check up with the ophthalmologist last week I found that the pressure had dropped. (Good news!) I also was told that he had arranged an appointment for me the following Monday with a glaucoma specialist in San Francisco. (More good news!) This was very welcome to hear as I had just that morning had a discouraging call with the office of the glaucoma specialist in the North Bay area; they had offered me an appointment around Christmas. (!!) I said “No thanks,” and figured that I could find someone else well before then.

Yesterday I had my appointment with the glaucoma specialist and he confirmed that I have iridocorneal endothelial (I.C.E) syndrome of the Cogan-Reese variety. It’s apparently pretty rare; he said in his 17 years of practice he’s only seen six cases.

The cause of I.C.E. syndrome is unknown and there is no cure. Apparently the goal is to just manage the symptoms: corneal changes that can affect visual acuity, and increased pressure that can damage the optic nerve. Apparently I’ve caught this early enough that there is minimal damage to the optic nerve now (yay!) and I haven’t lost any visual acuity. I do have some distortion in my right eye vision and haloing of lights in the dark that is caused by the corneal edema, though.

I have to continue on my variety of eye drops for the time being. He wanted me to give the one that I thought caused extreme light sensitivity another try as he thought that was happening because the pressure was high at that time. So, I put a drop in my eye yesterday afternoon to test it. So far I’ve had some light sensitivity, but it hasn’t been excruciating like it was the last time I tried the stuff. My eye didn’t look really red last night or this morning, but at nearly 24 hours after I put in the drops it’s looking pretty red right now.

Medical management (such as drops) usually don’t work to keep eye pressure down, so we’ve talked about surgery to put in an artificial drain happening in January, most likely. I see this doc again in December for follow-up. I’ll be curious to see if the pressure stays down enough that I can wait that long. When I saw the specialist yesterday the pressure had gone back up from 18 on Friday to 25. (20 or under is our target; I had started out with a pressure of 38.)

The good news is that this disease seems to affect only one eye, and my left eye seems pretty healthy with normal drainage angles. I’m glad to finally have a confirmed diagnosis and know my next steps. Lots of people have worse things to deal with, and I have good medical coverage.

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I drove over the Golden Gate Bridge today with no problems. This is a huge accomplishment for me!!

As I’ve previously written, I had a phobia about high bridges and twisty mountain roads before I moved here. I knew that I’d have to learn ways to deal with this phobia now that I’m living in an area with plenty of both, and so I started exposing myself to them in small doses.

Today I had the opportunity to drive over this iconic bridge because I was bringing my neighbor and friend to a hospital in San Francisco where she’s having surgery. I get to drive back late this afternoon/evening by myself, but I’m sure I’ll do fine.

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I’m settling in to my new location, but still grappling with loneliness at times. I can find things to do after work on weekdays — hiking, trivia, mediation, knitting, etc. — but there aren’t very many social gatherings on weekend evenings. It would be nice to see a movie with someone and then talk about it afterwards. Napa is clearly a “family town” and I don’t have a family to hang out with.

I guess this is where dating and/or having a steady partner would come in to fill the gap. I threw myself into those waters recently, but I’m thinking that experiment is going awry. It’s been a fun run, but last weekend was a let down where I kept getting promises that he’d meet up with me, and then last-minute cancellations. Honestly, from what I’ve seen of his personality, I think he just doesn’t like to say No to people or to invite confrontations. It’s too bad he didn’t realize what an easy-going person I can be; just give me a straight answer and tell me if you need a weekend to do other things with other people. But he didn’t do that, and I don’t like being left on the hook.

When he sent his last text to me Sunday night I never responded and that’s were things rest now. If he did reach out to me I’m not sure I should give him another chance or just cut my losses now. I’ll cross that bridge when I come to it.

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The fun just never stops

The iridotomy I had last week apparently isn’t working for my eye condition. The day of surgery and the next day everything seemed fine. I could see that the pupil was getting smaller again, and my iris looked more normal than it had in a while. But the following day my vision was distorted in my right eye. It seemed like I was trying to look through a blob of goo on the eye, and it was easily fatigued while working on the computer.

I called the ophthalmologist’s office on Wednesday and was told to come in that day to see the doctor. After a thorough examination, he said that the pressure was back up again, and the distorted vision was caused by my cornea thickening. My eye was showing signs of inflammation, which would be considered normal after the surgery, and could be contributing to the increased intra-ocular pressure (IOP) and cornea thickening. Nonetheless, he wanted me to stop the eye drops I had been taking to reduce the IOP and start using a different drop that was a combination of the previous medication, plus another one. I had a follow up appointment scheduled for the following Monday (yesterday), and was to continue with the post-op routine of prednisone drops(to decrease inflammation), plus the new drops until then.

Over the remainder of last week, I struggled to work as normal. The vision in my right eye was basically uncorrected. My glasses were no help, and in fact I was more comfortable with them off than on if I was looking at something across the room. However, I’m now at an age where reading glasses are necessary, so not wearing them at all makes it difficult to read any text. My eyes were easily fatigued, and the bright computer screen was uncomfortable after just a few hours. I messaged my boss that I needed to work reduced hours and he responded with a supportive message.

Yesterday (Monday), I went back for my check up with the ophthalmologist. I told the assistant that my vision was still quite bad in the right eye, and that computer work was very challenging for me. The brightness of the screen hurt my right eye, although switching to High Contrast seemed to help. She had me do the standard eye chart test wearing my eyeglasses and everything — and I do mean everything — was blurry, and looked like it had shadows behind it. Sadly, the IOP in my eye was barely changed, too. When the doctor came into the room I was crying. I told him that I felt my vision was worse now than it had been before the surgery. Honestly, I hadn’t even noticed that there was any visual loss before the surgery, but now my vision was terrible and the sensitivity to screens was making it very difficult to work.

The doctor was reassuring about my visual abilities, though. The pindot test (where you view the eye chart through a tiny pinhole) was very good, and the peripheral vision tests they had me take the previous week showed only small areas where my visual acuity wasn’t good. He noted that the reason I was having trouble with the brightness of the computer screen was because my pupil couldn’t dilate properly because of the pressure in my eye. Since the pupil was enlarged by the pressure and it couldn’t adjust smaller as needed, my eye really was being flooded with light which is uncomfortable, to say the least.

I received a new set of eye drops to add to my current regime only at bedtime, notice that he was going to refer me to a glaucoma specialist, and speculation that I have something called I.C.E. syndrome. The only good news about this disease is that it typically only affects one eye.

Last night I used the new medication and this morning I discovered that while it did seem to work since my pupil was smaller, I am having side effects that will likely make me unable to keep using it. Just looking at the digital alarm clock in the dark hurt. When I turned on a light this morning, it felt like I had been stabbed in the eye. This light sensitivity and the accompanying extreme redness in that eye are slowly going away, at least. I’ve left a message with the doctor’s office about my symptoms and am waiting to hear back.

So there’s still no definitive diagnosis, nor is there any course of treatment at this point. I’m simply trying to reduce the pressure in my eye and learn how to deal with wonky vision and light sensitivity until my next pressure check appointment on Friday. The mental load and screen issues make it a challenge to focus on work, but I’m muddling through as best I can. I’m able to work maybe 6 hours a day before I need to knock off the screen time completely.

Using the High Contrast setting seems to be helping, but my issues now aren’t just about screen glare. They are also about processing through how to deal with the changes and challenges in the immediate time and near future. The glaucoma specialist isn’t local, so somehow I’m going to have to get a ride (probably a car service) to and from appointments there if I do have surgery. And the lovely California sunshine that I moved here to enjoy is now something I’m trying to avoid because of the pain it causes my eye.

I really need a hug.

More medical fun

I’ve been pre-occupied lately with more medical stuff. Some of it is the same old stuff with some new developments, and some of it is new.

First, the old stuff. I had to go back to the gynecologist for a check on all the shenanigans earlier this year. The timing was fortuitous, since after I had set the appointment I started bleeding again and could talk to her about that odd occurrence. With my levels of estrogen and progesterone being pretty much non-existent when tested in April this was unexpected, so now I get to have the endometrial biopsy. Hooray (not). At least this doctor believes in good drugs. I took some misoprostol last night to “prep the area,” and was instructed to take a hydrocodone before I arrive at the office. My neighbor and friend is driving me to the doctor’s office, so I won’t be a hazard to anyone on the road.

I don’t expect that there will be any problems found with the biopsy, but it’s recommended to make sure my bleeding isn’t caused by something bad. When I told the doc that I haven’t had any hot flashes in a couple of months, she said it was likely my ovaries produced some extra estrogen for a while, which is why this happened. Sadly, the hormonal pendulum seems to be swinging back the other direction because I’ve started having a few little hot flashes during the night and evenings. (I wonder why they happen so much more often in the evening? I’ll have to ask the doctor.)

The really shocking thing I’ve been working on absorbing is that I was diagnosed with a form of glaucoma called angle closure glaucoma. This all came about when I went in for what I thought would be a routine eye exam not quite two weeks ago. I had been experiencing some redness in my right eye, and had noticed that the eye was looking a little odd, but I didn’t imagine it was anything serious.

The optometrist told me that the intraocular pressure in my right eye was very high, that I needed to use some drops over the weekend to reduce the pressure, and to come back on Monday when another doc could evaluate me for glaucoma. I tried not to worry about it over the weekend and used the drops as prescribed. When I went back on Monday the second doctor repeated all the tests and referred me to an ophthalmologist, where I was seen later that day. Two doctors examined me there and that’s when I was given the diagnosis and told I needed laser surgery to correct it. The drops were working to reduce the intraocular pressure, so I needed to continue those for another week until the surgery could be scheduled.

Yesterday was the big day, and after a laser peripheral iridotomy, I now have an extra hole in my iris. It’s been amazing how quickly the procedure has worked to get my eye looking normal again. Due to the pressure, my pupil was distorted and the iris looked bigger in my right eye than my left. Within a few hours the pupil shape and iris were looking closer to normal again.

Unfortunately, I’ll never regain the vision I lost in the eye. The vision loss seems to be mostly peripheral, and I can’t say I really notice it very much. I’ve apparently had this angle closure issue for “a while” now, so the vision loss has happened slowly enough that it never triggered any alarms for me. After the laser procedure yesterday the doctor told me that the reason I have the angle closure issue is that I have plateau iris syndrome: the shape of my iris makes the drainage angles in my eyes very narrow and easily blocked. If the iridotomy alone doesn’t work, I’ll need another laser procedure to widen the angles. I’ll also need to get the left eye fixed, too, so I can minimize any vision loss in it.

I’ve been getting my eyes examined every year since I have a vision plan as part of my employer benefits. However, this issue of narrow angles is apparently only recognized when there is a special exam called a gonioscopy — which isn’t part of a standard eye exam — performed. I’m making a list of questions to ask the doctor during my follow-up visit, and I’ve also already let my sister know about this since plateau iris and glaucoma seem to run in families.

The lesson here is to get your eyes checked every year. And if you have any history of glaucoma in your family, you may even want to request a gonioscopy to confirm if you have narrow angles. If I had been diagnosed with the plateau iris condition sooner I could have had iridotomy years ago and perhaps saved more of my vision.