Falling Down the Macular Hole -

One Person’s Experience
By Marcie Brown, May 14, 2009

Having enjoyed excellent eyesight for fifty-six years, I had never spent much time in the company of optometrists or ophthalmologists.  In fact, no time at all was spent in their offices getting the eye exams I would later regret skipping. 
The only glasses I ever needed held beverages, and then after I turned forty, cheap drugstore readers did the trick for items that no longer came into focus at the end of a fully-extended arm.

All of that changed when, on April 7, 2007, I had a sudden, alarming onset of floaters that looked like a very heavy netting of India ink passing over my left eye.  I asked a trusted friend about it.  She said, “Those are just floaters; I’ve had those before and they will disappear.”  It was just what I wanted to hear, so I waited a few days and sure enough, the odd netting disappeared from view.  I didn’t consult an ophthalmologist about it.

About one year later, while cruising down the highway home after work, I noticed some distortion in my vision as I tried to read the signs up ahead.  Did I need real glasses at long last?  How had I not noticed this before, or had it just begun to be a problem?  I immediately decided to see an optometrist to get measured for proper eyeglasses, sure that they were all I needed.  My general practitioner gave me the name of a practice nearby and I secured an appointment for the following week.

The optometrist was a very professional, well-dressed man who managed to hide his dismay when I could not give him the approximate date of my last eye exam.  Of course I couldn’t; I had been but a child at the time.  He finally abandoned the question in favor of conducting some definitive tests, after asking me for a recent history.  Almost at once, he knew what it was.  Little did I realize how far I was from knowing anything at all about it.  He said it seemed I had a macular hole in my left eye, causing the distortion and central blind spot that I exhibited during the examinations.  He led me to an optical coherence tomography (OCT) machine in another room and had me stare at a laser beam for a while, until his assistant printed out the result of what looked like New Mexico, or the Andes Mountains in winter.  Armed with evidence to support his diagnosis, he very patiently began to explain to me what had happened, using the topographical map of the back of my eyeball as a prop.  The poor man—I had no idea whatsoever what he was talking about, and I really did try hard to make sense of it.  It was that same level of comprehension one experiences after hearing, “It’s cancer…”  Just moving mouths, no sounds to inspire wise or cogent thoughts.  He said I would need to see his partner, an ophthalmologist, the following week.  I agreed and drove home, still struggling to see things up ahead.  There was a mailbox on a post that looked like a man waiting to cross the street, so I stopped.  The mailbox waved me on, not wanting to cross.  This was not a good sign.

The meeting with the ophthalmologist, hereinafter referred to as The Surgeon, went as well as one could expect when sitting in front of someone who speaks a language you have never studied or used on your own.  I nodded often and asked almost no questions as he explained the same things his partner had outlined the previous week.  If not for their generous incomes, one could almost feel sorry for these men, spending all that time and effort on a stone, for that’s all I was.  This time I took copious notes, which in retrospect is amusing, as they didn’t shed much light on the whole situation, even when I re-read them.  What I did know was that I would have the operation he described to me, because it meant I might get my old eyesight back and stop reacting to mailboxes and dumpsters as though they were living beings.  I asked when the next opening was and he said it was about three months away.  I said I’ll take it and left.

This was when the learning curve took a sharp turn upward, thanks to the Internet and my own inner terror.  I’d never had a real operation before, never mind on my eye, and this one promised to be memorable, if you paid attention to what The Surgeon said about the recovery requirements.  He referenced “face down time,” and although I heard that part, it didn’t really sink in until around the tenth time I read about it online.  How strange, to be required to keep one’s face toward the floor for a period of anywhere from one to four weeks!  Could this be true?  Apparently it was the only way to ensure success of the very delicate operation required to close the macular hole.  No one knew why I had it, or whether it would close on its own, but I wasn’t going to wait around for answers to those questions.  I studied day and night until I had an impressive folder of articles and advice of all kinds.  This website is the best I’ve found--a sanely-written experience by someone who understands the entire situation, the impact of very little information available to those who need it now, and how important it is to write clearly.

Additional visits to The Surgeon’s office helped me to fill in the blanks left by the initial shock of my diagnosis, and as the date neared I was given the opportunity to have the surgery about four weeks early, due to someone’s cancellation.  Hah! Someone got away in time, that’s how I viewed it, but perhaps that’s not what happened to create the available slot.  Either way, I said yes, take me in early and I will be ready.  The truth was that I had been ready for weeks by the time I got the early surgical date.

My brother kindly agreed to take me to the medical center where the surgery, known as a vitrectomy, was to be performed.  The facility was run like a finely-tuned machine, with a full team at the ready to take vital signs, administer all kinds of drops and medications, explain the local anesthetic required during the surgery, and the like.  Before too long they wheeled me into the operating room, known as a theater, probably because of the movie that plays in your head when you start to feel the effects of the anesthetic.  It was the most wonderful, warm and welcoming feeling as the IV dripped its magic into my system.  I was awake for the entire operation and could actually see The Surgeon move the tiniest of instruments across my eye, which was bathed in a bright golden yellow light with red and blue swirls moving about.  This was similar to an experience brought on by some very different substances in Big Sur, California around 1970, but that’s a story of a different color.  About an hour later they wheeled me out to the recovery area, face down on the gurney, where I groggily lay until my brother came to retrieve me.

For the next two weeks, I tried to make sense of the expensive rented chair with a donut for my face that was installed in my bedroom, along with a special mirror to reflect the TV screen.  I got tired of pressing my face into the hole of the donut, and finally settled on using my bed instead, lying on my side with my right arm fully extended and my face resting down on it, which served to keep the affected eye pointed toward the mattress, and provided just enough air space to keep me from suffocating.  That seemed important.  During this time, I learned that much of what is shown on television has very little visual value, and was able to enjoy listening to what went on nearly as much as I had enjoyed watching it before all of this began.  That logic did not apply to programs such as Project Runway, with fashion design as the focus, but for the most part, listening to talking heads was every bit as useful as watching them, if not more so.

Sleeping was a challenge for the first three days, as I could not get comfortable in a Surgeon-approved position and would sometimes leap off the bed in angry despair.  Exhaustion finally arrived and transported me to where I needed to go.  Once I crossed that line, I found myself relishing large amounts of sleep at all times of the day and night, without regard to responsibilities or chores.  This was a good thing and I continue to remember it fondly.

Eating lost its luster after the first face down sandwich.  I had heard of “open-faced” sandwiches, but this was another thing altogether.  As a true foodie, I was surprised by how quickly I lost interest in eating much of anything unless it was easily accessible through a straw.  That cut out a lot of the more enticing dishes I had looked forward to, and sent me back to long stretches of sleeping, or pretending to listen to audio books.

Although most of my online research included the promise of ten minutes of face up time each hour, The Surgeon was adamantly against it.  Therefore, the only real face up time I had for two weeks involved the mandatory application of three kinds of eye drops.  Not exactly a day at the beach, but necessary, so I did as I was told.

One of my least favorite things about the experience was the requirement that I visit The Surgeon for regular follow-ups, meaning a ride face down, in someone else’s car.  I developed a very low eye pressure complication right after surgery, resulting in daily visits to The Surgeon’s office for nine days, with a new round of daily eye drops.  They were quite worried about it, but when they finally figured out how to correct the pressure, I was able to space out the visits to one per week.

Now that I thought I knew all about macular hole from many, many nights of reading online, I was able to develop a system for getting information out of The Surgeon.  He wasn’t easy to learn from, but I wasn’t easily put off, so in I went to every visit, armed with my notebook and new list of questions.  He must have shuddered at the sight, but we managed to get through it until my visits became less frequent.  My visual acuity has not changed, and I am convinced that it is because the hole was created during that initial shower of floaters, over a year prior to surgery.  Research suggests (strongly) that long standing holes of a year or more are less likely to result in improved vision, even when successfully closed.  Such is the case for me, but even so, I don’t regret the experience, as it has given me the confidence that my vision will not worsen, and that has a great value.  The Surgeon thought the macular hole was fairly new because it was so tiny when he closed it, and that led him to believe I would enjoy improved vision.  But I know it wasn’t new, and accept the fact that I allowed the situation to continue without taking the necessary steps to correct it.

If I had to go through it all again, the only thing I would change would be not renting the chair, as it was costly (US$300 for one week), not covered by health insurance and not all that useful.  Otherwise, the advance preparation, including extensive study of what a macular hole is, who usually has them, how the surgery is performed and what one can hope for in terms of outcome were very valuable in making a tricky and somewhat frightening experience tenable.  Keeping family and friends from extensive visits during face down time worked best for me, as I was not able to entertain properly.  Not many would find talking to the top of another’s head an entertaining way to spend an afternoon.  Telephone calls were also less welcome, as sitting up with my neck bent to accommodate The Surgeon’s instructions soon became painful and I found it difficult to concentrate on what was being said.

It was a solitary time of healing and contemplation, during which I thought about writing up the experience, with the idea that I would get the predictable cataract not long after surgery.  But it has now been ten months and still there is no sign of a cataract, so this story isn’t over yet. 

Whatever your story, I wish you all the best and hope that your vision improves if and when you undergo this most mysterious and unknown event.  My best advice is to research, read and ask lots of questions until you have a solid level of understanding as to what you have, how it is treated, and what you can expect in terms of outcome.  Eyes to the floor!  I hope that you find the following list of tips and ideas helpful in your own efforts to make the most of your own situation.


Return to top


Vitrectomy Survival Guide
Tips and Tricks for Keeping Your Face Down

 

Don’t make the mistake of putting off anything you need done in advance.  After surgery, despite a high level of resolve, you aren’t likely to be interested in anything more strenuous than acquiring a ready-made snack.

This means you would be wise to:

If all else fails, just remember that you went through major surgery, no one’s experience is the same as another’s, and the best you can do is adhere to your doctor’s instructions so that all of their good work (and yours) won’t be for naught.

Good luck and clear vision,

Marcie Brown


Return to top