Important Issues Raised by Macular Hole Patients
These issues related to macular hole surgery and recovery were most frequently cited by the readers who contacted me following the publication of my five-part series Surviving Recovery from Macular Hole Surgery.
Lack of Information
Lack of patient information continues to be a problem. Almost every person who has written to me stated that their doctors did not provide any information about how to prepare for macular hole surgery and recovery. I have also heard this from nurses and a medical school professor who had never heard of a macular hole before developing one themselves.
In most doctors’ offices, there are brochures for patients on various conditions. I am unaware of any patient information in doctors’ offices about macular holes and have not heard of any retinal surgeons who have provided written information to patients. On rare occasions, a doctor has provided information about where to rent face-down equipment.
One reader’s email provided a real-life example of this lack of information: “The doctor provided me with nothing about how to prepare for this surgery and recovery, other than a brochure on where to rent equipment. I’m still aghast by information not provided by such a prestigious hospital, considering that most elderly people who undergo this surgery don’t have access to computers to research their condition and only follow their doctors’ orders, or lack thereof.”
[Editor’s note: The American Academy of Ophthalmology now publishes a Macular Hole Brochure, which addresses macular hole causes, diagnosis, treatment, and surgery risks.]
Timely Appointment with a Retinal Surgeon
According to my reader correspondence, this seems a serious problem in some areas of the country and several international locations. It is important to be assertive but polite and respectful while trying to negotiate the system. Here are some suggestions to help you advocate for a timely surgical appointment:
- Ask if there is a waiting list for cancellations.
- Call every day for an appointment, if necessary. Ask about being seen in place of cancellation or “no-show.” (In rare instances, people have waited daily in the doctor’s waiting room, hoping for a cancellation.)
- Write a letter addressed to the retinal surgeon’s personal attention (polite, worried, and intelligent) requesting a quick appointment. Explain how important this is to you. Explain that you will be fully cooperative with whatever you have to do in order to maximize the results.
- An urgent request from another doctor may carry more weight than a patient’s. Ask the ophthalmologist who first diagnosed you to intervene with the retinal specialist, stating that it is urgent for you to get an appointment.
- If you have special needs for good visual acuity, such as occupational or professional needs, add that to the letter, explaining that your vision is needed for your work.
- If you are not a senior and have a macular hole, be sure to specify that you have many productive work years ahead of you.
Help at Home and Living Alone
Many readers tell me they have been questioned about whether help at home was truly needed during their face-down positioning period. My response is that it is absolutely needed. I am convinced that I would not have achieved my visual recovery results without having (a) the means to pay for the rental and purchase of face-down equipment and related items and (b) the support of my husband, family, and friends.
Most of the readers who contacted me have been well-educated, resourceful, and have a human and financial support system. It has troubled me that this is not necessarily a profile of the general population.
Many older adults live alone and have limited financial resources, which can have an impact on macular hole surgery and recovery in the following ways:
- Limited support from friends or family members
- Inability to afford the purchase or rental of face-down equipment
- Being unaware that face-down equipment exists
- Limited ability to perform Internet searches for information
- Minimal information provided by doctors
- In most cases, Medicare does not cover equipment or related support services, such as physical therapy or massage therapy.
As a result, many people have delayed macular hole surgery because they have not been able to figure out how to do this alone. How many of these people may have lost their vision because of this delay?
Plan in Advance
Advance planning is always required. This is especially true if you live alone. You need a strategy and you need to break it down step-by-step and prepare your home:
- Organize your home ahead of time and know where everything is located.
- Learn to do some tasks non-visually. For example, I set the desired temperature of my thermostat and then memorized the left-to-right sequence of pushing the controls: off, heat, air-conditioning, off. Prior to surgery, practice with all of your settings and buttons without using your vision.
- If you are alone, try to make arrangements for someone to be with you at home as frequently as possible. Start with your family members, friends, and neighbors. Check with the social worker at the hospital or with your medical plan. Ask your doctor to initiate approval for a home healthcare aide in the hospital discharge instructions.
- Many hospitals, medical centers, and health insurance companies have social workers on staff that can help you find an affordable rehabilitation facility or home health aide. You can also check with your local Visiting Nurse Association. Although costly, it may be less than a rehabilitation facility. Check to see what might be covered in your insurance plan.
- For people who do not have a support network, look into local churches, civic groups, or universities. In one case, I suggested to a reader that he could offer to “trade skills” by trading his expertise in computer programming with a college student or retiree who could provide the daily visits he needed.
- Make sure you have a face-down sleeping arrangement and place items you use frequently, such as your TV remote or iPad, on the floor within easy reach.
- You can cook (or buy) food in advance and freeze meal-size portions, arranged with tactile labels to help you distinguish the contents. Can you depend on someone to bring in groceries? Consider contacting Meals on Wheels or other home meal delivery organizations.
- Think about how you will occupy your mind during the recovery period. Listening to audiobooks, using a two-way mirror to watch television, and using an iPad, tablet, or Kindle can help pass the time.
- You can learn more about face-down preparation, equipment, and comfort aids at Suggestions for Maintaining Face-Down Positioning After Macular Hole Surgery.
Using Eye Drops
Following vitrectomy, cataract, or other eye surgery, a regimen of eye drops is essential to promote healing, avoid inflammation and infection, and achieve as much visual recovery as possible. Taking all your eye drops, as per your doctor’s instructions, is critically important. There are different types, dosages, and schedules for each type of eye drop. It is essential to make a chart to keep track of your eye drops and schedules.
All medication can have side effects and eye drops are no exception. Take all drops exactly as prescribed and have your eyes checked regularly. I had two sets of negative reactions to eye drops: a rise in high intraocular pressure (IOP) as a reaction to steroid drops and a systemic reaction to drops classified as beta blockers. Several readers wrote to me about negative reactions that were similar to mine.
Dry eyes occur in many people as we age. This condition can also be caused or worsened by eye drops that are necessary following eye surgery. I use over-the-counter eye drops suggested by my doctor. It is essential that the eye drops are preservative-free, because the preservatives in some eye drops can worsen dry eye.
Although I no longer have an issue with dry eyes (see My Journey and Vision Recovery from Macular Hole Surgery – ConnectCenter (aphconnectcenter.org), I discovered at the time that a vaporizer, humidifier, or large rectangular pan filled with water, on the floor beside the bed, is of great assistance. In a hotel, I sometimes filled the wastebasket with water. If you have dry eyes, ask your doctor about the cause and ask about recommended remedies.
See Tips for Taking Eye Drops for helpful application hints and adaptations.
Face-Down Time Period
Face-Down and Closure of the Macular Hole
Surgeons are now using different techniques, as well as a different kind of gas than in 2009, resulting in faster closure of the hole. Therefore, most surgeons believe that a long face-down time period is no longer necessary for most macular holes to close. A minority of retinal surgeons believe that face-down positioning is not necessary in order for the macular hole to close. Most recommend face-down positioning ranging from 24 hours to 1-2 weeks. There is no consensus at this time.
Face-Down and Visual Recovery
There has been no systematic study of the relationship between the length of face-down time and visual recovery. Many readers, however, have shared what they experienced during the face-down period:
- Most are now face-down for a week or less.
- Some patients have been told that they could go face-up when the “bar effect” of the gas bubble was down to the lower third of their visual field.
- Some patients have been told that the time period when the gas is reabsorbing (but not yet gone) is critical. If the head position is wrong, this creates suction which can tug on the newly sealed hole.
- After completing the face-down regimen, some readers were told to be very careful about not looking up, lifting anything, sleeping on the wrong side, or sleeping on their backs.
- Some patients, whose hole did not close the first time, have been advised to have a stricter and longer face-down regimen following their second surgery.
- Some patients returned for testing after a short face-down period and were told to return to the face-down position because the hole was still open.
My perception, from communicating with dozens of readers, is that there is a strong and direct correlation between the amount of vision recovery and the amount/percent of time spent face-down, despite the discomfort. I believe the percentage of time face-down during the period when the gas is in your eye is critical. Many people told me they could not stay face-down and their vision recovery was quite limited or they ended up with distorted vision or even with the hole reopening.
Was my strict adherence to the face-down regimen partially responsible (in addition to having an excellent surgeon) for my excellent visual recovery? There is no way to know. You must discuss this with your own doctor. I am not an authority. Follow your doctor’s instructions and remain face-down as long as your doctor tells you to do so, but ask informed questions about the reason your surgeon is choosing that particular regimen for your particular eye situation.
Difficulty Maintaining Face-Down Position
Several readers expressed great concern about being able to do face-down positioning, due to degenerative neck and back problems, other spinal issues, bone spurs, breathing problems, claustrophobia, and fear of being face-down.
Be sure to discuss these issues with your surgeon, your primary care physician, and your specialist for your degenerative condition or breathing issues, and make an appointment with a qualified physical therapist. They can offer suggestions, such as using towels rolled up in certain ways to ease face-down discomfort. Regular massage and pain/desensitizing lotions applied to sensitive areas have been helpful to most people.
Several readers shared concerns about the ability of persons in their 90s to remain face-down. It is important to consult with the individual’s doctors, evaluate quality-of-life issues, and determine how important optimal vision recovery might be, as compared with face-down discomfort. The use of silicone oil, which does not require face-down positioning but requires two separate surgeries, is another option to discuss with the surgeon.
Face-down equipment and products are critically important. For people with spinal conditions, a mat for sleeping on the stomach can be helpful. Some people reported that their primary care physician had given them a prescription for a mild muscle relaxer or other analgesic, which seemed to help. See Suggestions for Maintaining Face-Down Positioning After Macular Hole Surgery for more information about comfort options.
Problems with Depth Perception
Problems with depth perception are usually caused when both eyes are not seeing the same-sized image. If the difference in image size between the two eyes is too great, the brain is not able to “fuse” the different-sized images together. The result is problems with depth perception.
This was of great concern to readers whose professions or hobbies require great precision, such as a museum curator who was concerned about dropping valuable art objects. Adjusting to these changes (pre-macular hole surgery, during recovery, during the development of a cataract, and post-cataract surgery) can cause problems with everyday functioning.
Poor depth perception can cause problems with reaching for a tool or eating utensil, as well as judging the height of a step or curb, or the depth of a bathtub. Shadows and shadow patterns can be interpreted incorrectly as drop-offs, level changes, steps, or obstructions. Reading, especially small print, can be difficult and tiring.
If you are bothered by depth perception problems during the recovery process, a comprehensive low vision examination, with an ophthalmologist or optometrist who specializes in low vision, may provide some helpful adaptations and solutions for everyday problems.
Also see Suggested Resources for more information about helpful products and organizations, as well as the author’s contact information.
I was an educator of blind and visually impaired children for 42 years. Although I have read and researched a great deal and have had extensive discussions with retinal specialists, I am not an ophthalmologist or a medical doctor.
Reviewed by Mrinali Patel Gupta, M.D., VisionAware Medical Consultant. Updated by the author August 2023.