My Vitrectomy Log or Too Much About Stu’s Eyeball
These are my thoughts and impressions about my macular hole and subsequent vitrectomy surgery. They are not designed to replace or even augment any professional advice. I note that I didn’t begin this log until January 19, 2015, two weeks after my surgery. I simply didn’t have the oomph to start earlier. The recovery from a vitrectomy is a long process. I’m slowly but surely getting better. I wrote these thoughts down because: 1) I hadn’t written much of anything for over two weeks and was itching to write; 2) I couldn’t find much information online about what recovery from this surgery was like from a patient’s point of view and thought it would be useful to others with upcoming surgery if I wrote a bit (Probably too much!) about my experience.
On November 21, 2015, I flew up to Seattle, Washington to give a few talks in the Pacific Northwest. When I got off the plane I immediately understood that my vision had changed. I couldn’t read any of the signs in the airport. I tried to look out of my right eye only. My vision was a complete blur. I tried to look out of my left eye only. My vision was also blurred. I tried to use my fingers to make a pinhole and focus my vision (I am nearsighted and wear glasses and this is a trick I’d discovered when I was a kid), but that didn’t help. I was supposed to take a rental car from the airport to travel to a friend’s house. I immediately thought, well that isn’t going to work. But somehow as I walked toward baggage claim my vision came back. I then examined the vision from each eye separately, yet again. My left eye was working fine. My right eye was not. The peripheral vision in my right eye was fine. But its central vision was a complete blur and distorted. It was like looking at the world through a bad funhouse mirror. Somehow my brain had figured out in an amazingly short period of time that my right eye wasn’t very useful and was relying almost completely on my left eye for vision.
For about a week before this, I had noticed that my vision wasn’t quite right, especially when I worked on spreadsheets. I had even told my wife that I was going to go see an eye doctor when I came back from Seattle. Then there had been times when I had been reading over the past few months when my right eye I would go in and out of focus for minutes at a time. But this airport experience was different. My distance vision was being affected and it didn’t seem to be coming back. Still I could see fairly well using my left eye for central vision and both eyes for peripheral vision. I didn’t want to bother my friend about picking me up at the airport. Plus I had to use a car to get to my talks. I decided to rent my car and try to drive to my friend’s house. I was able to drive with only modest impairment to my overall vision. It was late at night when I got to my friend’s house. I was pleasantly distracted by conversation and I knew I had two talks to give the next day, one in Seattle and one in Vancouver. I put my vision issues out of my mind.
It was a bit of a struggle to read from my novel during my talks the next day, but I got through it by closing my right eye as I read. It wasn’t until I got to my hotel room in Vancouver that I had spent any time alone examining my lack of vision. I looked at my face in the mirror with my right eye and noticed that I could see all but my eye. There was just a blur where my right eye was. This image – like something from a nightmare – did not make me feel good. I was in more than a bit of a panic. I spent about an hour on the phone talking to two nurses, both of whom recommended that I go to an emergency room in Vancouver. I thought about doing this, but then I thought about the expense of visiting a Canadian hospital without Canadian health insurance. Plus I had my doubts whether an emergency room had an ophthalmologist who could diagnose my problem. I decided that instead of going to an emergency room I’d go see an ophthalmologist in Seattle after my afternoon talk the next day. I made an appointment with an ophthalmologist using an online site.
The ophthalmologist in Seattle was excellent. He did some imaging and quickly told me that I had a macular hole caused by vitromacular traction and that I needed to see a retina specialist when I got home. I flew back home that afternoon and made an appointment with a local retina specialist for the Wednesday before Thanksgiving. He, too, imaged my eye. He said that we should wait a week or two. He thought that there was a decent probability that my retina gel would separate from my macula on its own. Then I wouldn’t need surgery. But if it didn’t separate we’d have surgery on December 16th. He’d detach the gel sticking to my macula and inject a gas bubble to aid healing of my macular hole. He didn’t explain how involved the recovery from the surgery might be. And his advice seemed a bit off. I started to read research papers about vitromacular traction and macular holes over Thanksgiving break. The more I read, the more I became worried and the more I started to feel hesitant about both surgery and using my local retinologist. I contacted a retinologist from UCSF and he agreed to squeeze me in for an appointment. Somehow I felt much better about this doctor. He said anyone could do my surgery and the earliest he could get me in was January 5. He didn’t seem to want to do my surgery, I could sense. It was too mundane and ordinary. But my feeling was that this was the guy for me.
I cancelled my December 16 appointment with my local retinologist. On January 2 I started getting flashes in my right eye’s upper peripheral vision. I also developed a huge floater in my right eye. I knew I had surgery coming up in a few days so I decided not to contact anyone about these changes. That was undoubtedly a bad idea. On January 5, when I talked to my doctor before surgery, he said I should’ve called him within a day of seeing flashes. I now had a retinal tear in addition to my macular hole. The floater, as was discovered during surgery, turned out to be a piece of my retina.
I had my surgery on January 5. For someone like me, a scientist, it was fascinating. I was only under light anesthesia so I could hear and watch the entire surgery. The crew at UCSF was highly professional. It was like listening to a NASCAR pit crew quickly put on tires in a race. I could see the gel being sucked out of my guy and the gas being pumped in after. The fluid sloshed into my eye like a rising tide.
The surgery took about an hour. The doctor thanked me for telling me about the flashes. He said that without that information he probably would’ve missed the retinal tear, which he lasered shut during surgery. I sat in the recovery room for about an hour and then my wife drove me home. We got back around 6 o’clock and I was exhausted. I felt no pain, just a raw burning in my eye. It felt like someone had lightly sanded my eyeball. My sinuses were draining with gobs of clear fluid. I used up a few tissues and then collapsed face down for the night.
My doctor told me during my first visit that I would need to stay face down morning, noon and night for six days following surgery. On the day of surgery, he upped this period to eight days. The gas bubble in my eye, which he had injected during surgery, needed to press against my macula for at least a week to make sure the hole closed and stayed closed. He told me that I wasn’t allowed to read during this time. For someone like me, who reads at least eight hours a day, this was a tough restriction.
I prepared in advance for the recovery period from my surgery. I’d bought a massage chair used off Craigslist for $100 for face down time during the day. This turned out to be an essential purchase. I’d gone to the library and brought back over a dozen books on CD. These turned out to not be particularly useful. I got a bunch of free audiobooks for streaming on my iPad and iPhone. It turns out that I don’t like audiobooks much, but the streaming versions were useful as a sleep aid as I’ll explain a paragraph or two down. I got a Netflix streaming subscription for a month and free Hulu streaming for a week. I find all TV shows completely boring, but I was hoping they’d have some decent movies for streaming. This hope turned out to be mostly false.
The big hurdle I knew about in advance was sleeping face down at night. I put a futon cushion on the floor and placed the massage chair head rest above it for my head to burrow into at night. My wife had made a cover for the head rest out of soft cotton quilting material, which increased its comfort level considerably. By the way, I don’t know how I’d have recovered from this surgery without my wife. You can’t do this alone, that’s for certain. She has been fabulous.
I slept pretty well the first night because the surgery had taken so much out of me. I woke up after four hours because I felt that the head rest was like a straight jacket for my face. I managed to go back to sleep for two more hours. This would be the only night of decent sleep I’d get for eight days.
I went back to see my doc the next morning. He took off my bandage and said everything looked good. He told me to check for black areas appearing in my vision during the recovery period. Because my right eye was filled with a gas bubble everything distant was blurry through that eye, but I could read text if I placed it a centimeter from my eye. I hadn’t been able to read anything in my right eye before surgery, so I was elated. My doc said that my macular hole had probably closed overnight. I asked him to explain the science behind this. He said no one understood how the hole sealed, it just did what it did. My first thought was, “Medicine. What a wanker science. They do shit and without finding out why and how it works.” But then I thought, “Don’t be an obnoxious jerk. Idiot, your hole probably has closed.” I went back home feeling optimistic. The burning sensation in my eye was gone after less than two days.
I fell into an easy routine during the days. My doc told me that I could spend five minutes of every hour with my face up. I could shower, eat, go to the bathroom, etc. just like a normal person as long as I spaced things out. That’s what I did. The rest of my time I chose to spend in my massage chair. The chair has an arm rest, which is where I put my iPad. I’d watch streaming videos and listen to streaming books with my head down. I’d nod in and of sleep as I watched. I missed reading, but I kept telling myself that this is what I needed to do to get better.
Daytimes were OK, if incredibly boring. I needed some intellectual stimulation so I listened to some Hebrew conversation CDs. But I was also pretty out of it. I was tired both physically and mentally. My wife gave me my four sets of eye drops a day.
I’d check my reading vision a few times a day. I would fall in and out of being able to read with my right eye. A little purple dot appeared in my central vision early on, which would fill in the circles in o’s, g’s etc. It was something I could live with easily, I thought. No black areas appeared in my vision. There were no complications.
The gas bubble meant that distance vision was completely fogged and worse than that the bubble would shake around as I walked. This made walking difficult and I’d hold onto things along my path to make sure I didn’t fall. The sloshing would get worse as the days wore on because the gas in my eye was gradually leaking away (as it should have done). It made my right eye seem like it was going through a washing cycle in a laundromat. The difference was that I wasn’t viewing the washing from the outside. My eye was the washing machine and I was looking from inside the machine to the laundromat outside through my lens. It would take me a few days before I felt sort of steady on my feet.
It was the nights that were the big bother. Every hour I’d wake up with a straight jacket on my face feeling. I’d want to sleep on my side, but I keep telling myself, “Idiot, do you want to see out of this eye or do you want to be as blind as you were before surgery?” I knew my left eye would be susceptible to the same problem in the next few months to years. As I heard my surgeon say to his nurses during surgery, “Wow, some people have really sticky gel!” The gel was sticky in my left eye, too, and had yet to separate from my left macula. If my left eye gel blew a hole in my macula or worse, I wanted my right eye to be in decent shape. Taunting myself worked wonders. I’d force myself back into my head rest or alternatively push away the head rest and place my fists between my forehead and the carpeted floor. I’d sleep for an hour and wake up again. This was my nightly routine. Often, I’d listen to a streaming audiobook through my earphones between sleeping. The books usually would put me right back to sleep. My body ached from my neck to my waist.
On the fourth night, I borrowed a full body massage cushion with a built in head rest from a neighbor who is a professional massage therapist. I moved from the futon on the floor to my bed. It was nice to sleep next to my wife again. For two nights, I slept this way. It wasn’t much of an improvement, though. After two hours, I’d wake up with the straightjacket feeling yet again. I’d throw away the full body cushion and rearrange a bunch of pillows so I could sleep face down. I was also trying to keep still so my wife could sleep well. This added consideration of making sure my wife wasn’t disturbed was not good for my sleep, so for the rest of my face down nights I went back to the futon on the floor. I found it far more comfortable to turn around 180 degrees from the earlier way I’d been trying to sleep. My knees and feet were now on the carpeted floor. I put a pillow under my knees. I put another pillow under my chest. The massage headrest was on the futon cushion. Again, I’d start with the headrest and sleep for an hour before I’d wake up feeling that I was being tied down. Then I’d go to using my fists between my forehead and the futon cushion and wake up every hour. I’d listen to streaming audiobooks as I’d doze on and off. I wasn’t sleeping any better than before, but I was far less achy when I woke up.
I went back to my doc after 8 days. A resident manhandled my eye before my doc saw me. He was really rough, made me clench the arm rests of the examining chair frequently as he blasted a light in my eye. My wife said I was jerking my legs up and down as he was doing this. It was painful. He also scratched the outside of my eyelid and had zero in the way of a bedside manner. I hoped to never see him again.
But my doc was excellent. He’s very calm and efficient. He has a light touch and has a comforting bedside chatting style. I still couldn’t see a damn from a distance with my right eye because of the gas bubble (which was still filling up about 90% of my vision) but could still read text close up quite well. He told me that I was done with my face done time. I was ecstatic about this news, especially because the resident had told me that I’d probably have to spend another week or two face down during the night.
I assumed wrongly that now that my face down time was over, I could go back to living a normal work life. I was eager to get to back to work. I’d just spent over a week with little intellectual stimulation and was desperate to start thinking and doing some problem solving again. Plus I had put on four pounds while being a face down slug for a week (dinners tasted so good during that week; everything seemed to tantalize my taste buds) and wanted to drop some weight in a hurry.
But the fact was that I still didn’t feel well and still had washing machine eye. When I left the doctor’s office, I still felt unsteady on my feet. Plus my eyelid stung from the scratch I got from the resident. Plus my eyeball suddenly felt raw, dry and scratchy.
I went back home and slept like the dead for nine hours. I still didn’t feel well, though, when I woke up. My eyeball still felt dry and scratchy. The gas bubble bouncing around my eye was distracting. I pushed myself to walk for a couple of miles during the day. I read some, but it was tiring to do so because my bad eye was interfering with my reading vision. My doc said it was important to keep using both eyes and not put a patch over my right eye. I kept unconsciously closing my right eye as I read and then would force myself to open it again.
I slept eight hours straight through the next night and still felt lousy when I woke up. I still had a scratchy eyeball sensation. I called the ophthalmology office and talked to the resident I disliked. He recommended artificial tear cream at night and noted I had spots on my right cornea. That was news to me. I drove a little bit to get bagels and mail some letters. I walked about five miles. I still wasn’t feeling at all energetic, but was pushing myself to keep going. I tried to read, but it was still difficult. I used the cream at night as per the resident’s suggestion.
I again slept well and the scratchy eyeball feeling was gone when I woke up, but I had new problems. My sinuses were aching from my right temple to my cheek. They were throbbing so much that I couldn’t sit upright. Plus my eyeball felt like it was a tight fist. Whenever I tried to focus on a moving object as it got close to me, I’d feel a jolt in that eye. I’d get a jolt if I tried to put toothpaste on my toothbrush. I’d get jolts even if I closed my bad eye and let my left eye do all the work. I took two acetaminophen tablets and took to my massage chair. This proved to be very comforting. I sat face down for a couple of hours. The rest of the day, I made sure to avoid any close up vision. I only looked at distant objects. This kept the jolts down, but my eye still felt like it was tight and cramping. My sinuses still ached but they weren’t as bad as they had been in the morning. My wife and I went to a friend’s house for dinner. I came home, sat in my massage chair for an hour and then contacted UCSF’s on-call opthamologist, another resident. I talked to him and he said my symptoms were unusual and he didn’t have a good explanation for them. He wanted to meet me the next day, Sunday, to rule out anything dangerous.
The next morning, my sinuses were painful again and my eyeball was still tight. I’d felt it twitch and cramp once or twice the night before. I took two acetaminophen tablets again and went back to my massage chair until it was time to meet my doctor.
He gave me a thorough exam and found nothing terribly wrong. My interocular pressure was fine, something that was on the high side during my last visit. He, like my regular doc, was excellent with a light touch. He theorized that when I went off my atropine drops the previous Wednesday my eye started to over-flex its lens. He recommended I go back on atropine drops until my next scheduled appointment.
I decided to tough it out for a day or two to see if my symptoms would dissipate on their own. I discontinued the tear cream at night as well. The next morning, my eye still felt tight – I’d again woken up in the middle of the night because my eye was cramping – and my sinuses ached, but the intensity of the pain was down. I immediately took two acetaminophen tabs and went to my massage chair. By the afternoon, I felt much better, as good as I had felt in two weeks. I had decided that perhaps my tight eye was due to the mismatch in vision between the two eyes. If I stopped wearing glasses, maybe the mismatch wouldn’t be as great and the eye strain might abate. I stopped wearing glasses. Maybe this helped. All I knew was my eye wasn’t feeling so tight and cramped
Today I woke up with even milder symptoms. Again, I went straight to my massage chair. I have energy again, enough energy to type these few thousand words at any rate. I still can’t see a damn through my right eye. I’m guessing it will be another two to three weeks before the gas bubble shrinks enough that it no longer obscures my vision. Recovery from this surgery has been a full time job. It’ll be at least a month total before I’m done with my recovery. I’m optimistic I’ll have most of my vision back when I’m done,