This happened in April.
I was lying on a table, and there was a woman standing on either side of me. The one on the left side was instructing the one on the right, who held a needle, how to fold a napkin in a particular way in relation to it. The needle-wielding lady was a young nurse in training, and before the coaching started (“fold it this way, not that way!”), we had exchanged a few gentle words about finding the vein, and whether the same needle would be used to both extract blood and deliver intravenous fluids. She said it would be. Now I was a bit concerned, listening to the rather harsh, admonitory directions being given. Was the young nurse up to the task? And more to the point, why was my eye surgery the occasion of this practice session?
When I first entered the room, there seemed to be at least 10 people buzzing around—why did this procedure require so many participants? Two people introduced themselves -- the surgeon who was the MC of the show, and his Fellow, an ophthalmologist who had been at my consultation with the surgeon 2 months earlier. The Fellow poked her head into my line of sight (such as it was) and asked if I remembered her. How difficult it is to recognize anyone with a surgical mask on! And how sad it seems to me now, given what they were about to do to me, that they weren’t addressing me by my first name.
I had not been told about the many things that were now happening. When the anti-clot balloon was attached to my right calf, I said, “My circulation is very good!” but no one paid any attention. Of course, this was a medical school, so the nurse training was a commonplace – but they might have warned me. Now that the needle had gone in, I was unable to think anything else about why so many people were involved, or what each of them was likely to bill me.
Just before entering my sedated “twilight” state, I heard several people asking, “where is the tissue?” After which I was happy to hear it was located. This answered a burning question that had dogged me since I was first diagnosed in January with a full-thickness macular hole. At that time my Albany Retinologist referred me to the hospital in NYC because my hole was special, or more especially hopeless, given the deterioration of the eye in general. It was explained that I should take this expensive trip to NYC because he had studied with a Doctor-Scientist there who specialized in these holes. And most excitingly for me, his former teacher would use an amniotic membrane to close the hole, the latest thing in eyeball technology.
Back then, I went home with my seeing husband-- and I should say right now that I am so fortunate to have one, considering how every dilation leaves me blinded-- and immediately googled the Doctor-Scientist and found a paper in which he reported his findings from working on cadavers. So very reassuring to know the procedure was successful on dead subjects.
At our consultation in February, we learned my new doctor would not commit to the exact procedure he would use to close my macular hole. There are a few techniques, mostly developed in the 2000’s and 2010’s, which my local Retinologist might have used himself. The most popular one involves using a piece of the existing macula. As for the new tissue technique, my surgeon said he had not yet published his report on any of the 13 live people he had operated on. [His notes from this meeting, under “Suggestions”, say: “Myopic macular hole OS. Recommended PPV/membrane peel/possible hAM graft.”] At this single preparatory meeting, he didn’t discuss much of the What or How. I missed seeing the model of the eye, the stretch of the macula, the failure of the vitreous (“FTMH; Myopic maculopathy; Vitreous syneresis; PVD; Pavingstone degeneration; NS”). What was he actually going to do to fix this thing? He didn’t say. The notes also discuss the OD, my right eye. That one didn’t seem to be doing so hot, either. We asked how improved my vision would be after the operation, and he said (with grim satisfaction, it seemed to me): “this is a salvage operation”.
We went home to google “Vitrectomy” and watched some stultifying videos to prepare for the worst—which turned out to be better than what was done to me. In these videos, three holes were drilled into some poor schmoe’s eyeball, so that a camera and a couple of microsurgery tools could be inserted. One was a kind of vacuum, to remove the vitreous. At the end of some kind of “staining” and “flap” articulation, a gas bubble was blown in there. I steeled myself and tried to think objectively about it.
Two months later, I found out in a post-op exam that they drilled five holes in my sclera. I still don’t know what each one was for. But I remember that after the first 2 hours of the procedure my sedative wore off—that is, while the operation was still under way. I saw white gauze out of my better eye, and there was a profound silence. I panicked and labored to speak, working against the oxygen tubes in my mouth and nose. I mumbled foolishly, “Is it over?” to which my surgeon sternly replied, “Don’t talk!”. Now I started to imagine I could feel some kind of scratching in the back of my eye, some tinkering going on back there. This was somewhat distressing.
They finally wheeled me out, back to the private room where my husband was dutifully waiting. He commenced a friendly banter (see: flirting) with the nurse who stayed with me. When after an hour the intravenous was finally removed and I was allowed to get up to use the bathroom (lots of bladder pressure from all that intravenous fluid), I felt a very wet sleeve of my operating gown and saw it was soaked red from my blood. This nurse was clearly distracted from properly bandaging my arm. Throughout my hour-long wait, the poor woman kept looking uselessly into the corridor, where we could all hear my doctor issuing instructions. She clearly hoped my surgeon would come to speak with me. When he didn’t come in, after some more joshing and joking, I was stood up, dressed, and told to keep my head down. We inched back to our hotel.
There is a euphemism for this recovery period—it’s called “positioning”. You may ask, why can’t they just call it “face-downing”? I know why. It’s to keep the mostly female, mostly elderly patients in a cooperative state. When I had my February consultation, I asked how many days I’d have to spend face-down. He said six. That’s 6 days of having to sleep face-down (donut extension to mattress, like a massage table), and keep the head down 90% of the waking hours. Then, after those six days expired, I expected relief, but was told “another seven”, but with a small concession, I could sleep on my right side (only). Then after that week I asked again, and was told, “until the bubble dissolves”.
Again, I recommend having a Seeing Husband for this process. There are just too many things you can’t do if you keep your head down.
There’s a whole industry sideline to surgical supplies, “Vitrectomy equipment”, and I found my supplies on Ebay and Amazon, trying to save money by avoiding purchasing new, or renting at more than $100 a week. I spent most of my money during the week in NYC at a hotel in Washington Heights because I didn’t want to travel away from the doctor after this weird procedure, only to travel back a week later for the post-op exam. As it turned out, when we finally drove away from the frenzied mean streets of the city, I discovered it was completely nauseating to ride in a car with my head down. We stopped a few times at rest stops where I guzzled Coca-Cola and paced the perimeter of the parking lot looking as if I had lost something on the ground.
There are also articles by Ophthalmologists in which they report that it is undetermined whether face-downing is even necessary.
The bubble became tantalizingly small on the 17th day and vanished on the 18th. I lifted my head and was told I couldn’t exercise. It was OK to walk, so I started taking regular 5-mile walks. In four days, it will be a month since the operation, my MH eye is not seeing well (some peripheral vision but no center focus and a general dirty-window view) and I’ve been told not to expect much improvement for months.
Of the general population, 0.3% develop macular holes. Of these, 80% are women. Why is that?
I have a follow-up exam on May 10th.
