Photo Source: Retina Gallery
Editor’s note: Several years ago, Joy Efron, Ed.D., wrote a series of articles on macular and pseudo macular holes based on personal experience. In this post, she discusses highlights of the recently updated articles.
As I write this, in 2023, I am reflecting on my macular hole diagnosis, surgery, and recovery in my left eye 14 years ago. I am also remembering my pseudo macular hole diagnosis, surgery, and recovery in my right eye 11 years ago. I am deeply grateful for the visual outcomes. Both my distance and near vision are excellent.
In this post, I share my great concerns and worries during the “macular hole period of my life.” Side effects from eye drops were a major problem.
Before my macular hole surgery, I was not happy with my vision. What if I had very little visual recovery? What if this happened to my other eye? Despite all my experience as an educator, I had to deal with potentially new issues.
- Braille: I was a good braille reader, but I read braille with my eyes. If I lost my vision, I would have to work at it, but I could transition to reading braille with my fingers.
- Daily Living Skills: Knowing something academically and learning how to complete a task differently is very different. I knew there would be challenges, but I could learn these skills.
- Orientation and Mobility: This is another area that would present challenges. My greater concern was losing my driver’s license. Yes, there are solutions, but they would necessitate life changes. Uber, Lyft, and paratransit existed, but the potential lack of independence — waiting for someone to pick me up would certainly affect spontaneity.
- Access to Information: I served on an audio description committee — setting some guidelines for the description of TV and movies, but was very concerned about needing to access the computer and the internet. I worried about understanding visual messages, context clues, and getting important clues from people’s facial expressions.
My Biggest Fear and Concern
Immediately following my retirement party in 2004, as my husband and I walked to the car, our son and daughter-in-law announced, “You think you just retired. But you did not. You are about to start a new job.” They explained we would be grandparents in seven months! This started a wonderful chapter in our lives! During the entire macular hole experience, my greatest concern was the potential of not being able to see the faces of our two grandsons as they were developing and growing up (ages two and four at the time of diagnosis). At the risk of sounding like a “typical grandmother,” as I write this in 2023, they are both tall, handsome, highly academic, athletic, and wonderful young men!
Reasons for Great Success/Visual Outcomes
My remarkable visual recovery would not have been possible without the skill, professionalism, and compassion of the following people:
A highly skilled retinal surgeon (who I convinced to operate soon after diagnosis); a cataract surgeon with experience operating on patients with a history of macular holes; the devoted support from my husband, family, and friends; patients who openly shared their experiences and gave me valuable guidance and advice from a personal friend who is a retired retinal specialist. See the Acknowledgements Section in the article “Suggested Resources for More Information on Macular Hole Surgery” for more details.
Additional contributing factors were my intense research, connecting with people who generously shared their experiences with macular hole surgery, and my motivation to do everything necessary to maintain face-down positioning post-surgery. Since gas rises, face-down positioning enables the pressure of the gas to close the hole post-surgery. Prior to surgery, I did a great deal of planning and organization and tried to analyze and solve potential problems associated with the face-down positioning that would occur following the surgery.
Technical Information and My Continuing Concerns
Readers who want technical information about macular holes may want to read the current surgical recommendations/procedures/practices from the American Association of Ophthalmology. The following article is written by and for retinal surgeons:
Idiopathic Macular Hole Preferred Practice Pattern® – Ophthalmology (aaojournal.org).
As I always caution, I am not an ophthalmologist or medical doctor. My visual recovery is much better than those mentioned in the article. Personal experience (not medical knowledge) suggests face-down positioning permits the gas (which rises) to apply pressure to the hole, helping it close. I compare this to a wound, applying pressure evenly versus repeatedly applying pressure and stopping. The continuous pressure achieved better outcomes for me and others.
Medication Side Effects
I have often joked I can take one pill or drop and almost immediately write the medication insert discussing “Possible Side Effects.” My reactions can be extreme. Many people, especially older people, have side effects from medication, and it is important to discuss these immediately with your doctor. My reactions to eye drops are summarized in the following article: Complications I Experienced Following Vitrectomy Surgery. See the section that starts with Reactions to Eye Drops. A small but significant percentage of people may have similar reactions. I often have extreme sensitivity to medication.
An early and extreme example of my sensitivity to medication occurred in 1979 when our younger son Neal contracted lice. We used a special shampoo on him and were instructed to avoid getting the shampoo in our eyes. Despite being extremely careful, soon after my shower, my eyes started burning and I had blurry vision. I went to the ophthalmologist for an emergency appointment, but it took a couple of weeks for my vision to return to normal and the pain disappear. In googling to find out information about adverse reactions to over-the-counter lice shampoo, I found that corneal abrasions have been documented in some people.
Another dramatic example of my extreme reaction relates to pain medication. In 1970, we were in Maui, driving the beautiful “Road to Hana” (52 miles with 617 narrow, winding curves and 59 narrow, one-way bridges). At that time, there were no facilities along the way, and I developed a horrific headache that kept increasing in pain. Our baby Danny (now 53 years old!) was in the back seat, and I was afraid he would have to grow up without a mother. When we arrived in Hana, there was a tiny grocery store. My husband pounded on the locked door and a lady called across the island to get a doctor’s authorization to give me two pills. These were Percodan tablets, a rather common prescription (combination of aspirin and oxycodone for relief of pain). Within ten minutes I was hallucinating: running through spectacular fields of flowers with vibrant colors and wonderful odors. I had gone from awful pain to laughing hilariously for a couple of hours. Since that time, I have heard countless stories of people, especially seniors, having hallucinations due to pain medication. Your doctor needs to be informed if this happens to you.
Prednisolone Steroid Eye Drops: These are typically prescribed following eye surgery to control inflammation, but a small percentage of people react negatively to high intraocular pressure, which can damage the optic nerve and cause glaucoma. My IOP went up to 42. It took several weeks and different medications for the pressure to come down. (Anything above 20 IOP is potentially dangerous.) Fortunately, I had no damage.
- History Repeats Itself: Following my pseudo macular hole surgery, prednisolone was prescribed again, and I reacted the same way. Once again, it required three different medications for the pressure to return to normal. Once again, my optic nerve was not damaged. Ensure your pressure is measured after surgery — ensuring your optic nerve is not affected by the steroid medication.
- Glaucoma Medication: My doctor believes people who react to prednisolone the way I did are statistically susceptible to developing glaucoma in the future. He decided to put me on glaucoma drops. Levobunolol, a beta blocker, was one of the medications he prescribed. Within a few days, I started experiencing increasing visual blurriness, fatigue, exhaustion, headaches, dizziness, and trouble sleeping. Each day was a little worse. I did not think this was due to eye drops, but did some research and immediately called my doctor. He changed my medication at once. By the next day, the symptoms were gone, and my energy began returning.
- Punctal Plugs: In Complications I Experienced Following Vitrectomy Surgery, discover how punctal plugs helped my dry eyes until I suddenly had a severe allergic reaction. It cleared up in a couple of hours.
Why I Share
I share my unusual and extreme reactions in hopes readers will carefully monitor and inform their doctors of abnormal happenings that might be related to medication. It is very important to be aware of unusual symptoms, contact your doctor immediately, and do your own research.
I am NOT a medical doctor. I was an educator of blind and deaf-blind individuals for 42 years (teacher, principal, coordinator, professor). I had never heard of a macular hole. Following my own research, I sent an email to family, friends, and colleagues inquiring if they knew anyone who had a macular hole. Jean Worfolk and Christiane Emonin had successful visual recovery results and both gave me excellent suggestions.
Since I wrote my articles for APH VisionAware, I have been contacted by people worldwide. I am happy to advise in any way I can. Feel free to contact me at [email protected].
Best wishes, everyone! Research! Ask questions! Follow your doctor’s advice!
Again, feel free to contact me.
Macular Hole – ConnectCenter (aphconnectcenter.org)—and related articles
Macular Hole Updates: Treatments, Recovery Suggestions, and Patient Issues – ConnectCenter (aphconnectcenter.org)—and related articles
A Conversation with Antonio Capone, Jr., MD on the Topic of Face-Down Positioning after Macular Hole Surgery – ConnectCenter (aphconnectcenter.org)