Part Three: Suggestions for Maintaining Face-Down Positioning After Macular Hole Surgery
Joy R. Efron, Ed.D.
Below is the third of a five-part series, "Surviving Recovery From Macular Hole Surgery." This section provides in-depth suggestions for making the difficult face-down positioning period of recovery more comfortable.
The following was helpful for me, and I hope that some of this information will be helpful for you in pre-op planning. However, everyone is different and you will probably discover other techniques/hints that work for you. Be sure to check with your doctor concerning any products mentioned in this document. You will find some suggestions at vitrectomy.com, under the heading "Tips and Hints."
As stated previously, the pressure of the gas bubble is essential for the hole to close. Here is my layman's reasoning/interpretation: If you have a bad cut and put on a band-aid, that band-aid needs to stay on for good healing. If you keep taking that band-aid off and then putting it back on, the cut does not heal well. The pressure of the gas bubble facilitates macular hole closure (like a band-aid on a cut). The macula is located at the back of the eye. As a result, every time you lift up your head, it's similar to taking that band-aid off a cut. I walked, including up and down stairs, with my head down. I picked up my head only to rinse my hair after washing it and for inserting eye drops. It was brutal, but I was determined.
Keep your head down as much as you can possibly tolerate. Look at your toes, even when walking. Keep your face down. Do not cheat. Do not lift your head to greet or visit with visitors. If you can, rent a two-way mirror to enable you to see and be seen by visitors and to watch TV.
It's my belief that without strict compliance to post-operative face-down positioning, macular hole surgery will most likely be unsuccessful or of limited success. It would have been impossible for me to remain face-down consistently for the six-week recovery period without vitrectomy (face-down) equipment.
Ironically, Medicare (and therefore many health plans) considers face-down positioning equipment to be "comfort" and "convenience" equipment, and therefore does not provide reimbursement for rental as durable medical equipment.
Some health plans cover equipment rental for recovery from macular hole surgery.
Ask your doctor or your health plan administrator if you are covered for equipment rental. I strongly advise that you get a letter from your doctor stating that the post-vitrectomy face-down equipment is "medically necessary" for your post-operative period. If either Medicare or your health plan subsequently denies you coverage, be sure to appeal their decision. Based on your doctor's statement of medical necessity, there is an excellent chance that your health plan will ultimately approve funding the equipment rental. I failed to get the "medically necessary" letter from my doctor and therefore had to pay for the rental/purchase of equipment.
If (despite the doctor's letter about medical necessity) vitrectomy equipment is not covered by your health plan and you are financially unable to rent equipment, insist on being given suggestions to relieve the discomfort of face-down positioning. Ask your doctor or health plan for a referral to a physical therapist or other health-related professional who can suggest ways to improvise with the use of pillows, blankets, towels and other household items. Pillows placed at strategic body points can facilitate face-down sleeping. A large towel fashioned in a horseshoe shape can help support the head for sleep. Being able to lie comfortably on one's abdomen is extremely important. Ask for information about locating an inexpensive mat for this purpose.
I did a lot of Internet research into equipment, and I called various companies to compare products and prices. See the Resources section for some suggestions. Look at the equipment online. Some of this equipment may be found at major massage supply stores. I recommend finding a retail location where you can sit in/on various pieces of equipment produced by a variety of manufacturers to help determine what will best work for you.
I rented the following equipment. Most of these items can be seen online.
- Kneeling massage-type chair for day use
- Head support/cradle for foot of bed and seated support
- Adjustable tray placed below the face cradle
- Arm rest shelf
- Sternum pad
- Two-way mirror to watch TV and see/interact with people
I purchased the following equipment. Most of these items can be seen online.
- Basic mat to relieve lower back strain while sleeping on one's stomach
- Fleece cover for the head rest. The cover of the face cradle can become uncomfortable on the face; the fleece is much softer. See Face Pillow.
- Biofreeze gel to relieve neck and shoulder pain. See Sleep Aids.
I purchased an Ergo Spa Lounger, which is essentially a patio lounge chair with a large opening for the face. The Ergo Spa Lounger worked well for me during the day. Since the sides were hard, I draped a pillow over each side of the chair, under my armpits.
We had an adjustable-height computer table in the house. A shelf mounted on an adjustable tripod would work just as well. Setting the shelf surface at chest level was very helpful in order to rest my head (on my folded arms or on a pillow), eat, drink, and even use the computer for short periods of time while standing and maintaining face-down positioning.
Anticipate what might be needed and make it accessible. The following tips may sound compulsive, but for me, it was helpful to easily access what I needed. Obviously, everyone has different needs and different living styles.
Make Needed and Desirable Items Accessible
Prior to surgery, try to anticipate what will be needed in each room and make those items easily accessible.
- Set up trays/baskets on the floor in each room with items needed, e.g., toothbrush and cosmetics in the bathroom; phone, paper, and pen by the bed, etc.
- Organize all important papers so they are easily accessible.
- Place frequently-used food on the lower shelf of the refrigerator door.
- Place bowls/cups/straws/cereal on a low (slide-out, if possible) shelf.
- Set up a power strip by the bed (and in other places you think you will be spending most of your time) and have a stool/chair within reach. Place a box atop the stool/chair with everything needed: TV control, DVD player, portable phone with charger, cell phone and cell phone charger, medications, eye patch and tape (first week), eye drops, tissues, comfort and sleep aids (especially decongestant aids to avoid congestion caused by face-down positioning), audio books, pad and pen, etc.
- Set up telephones with speaker modes by the bed and other places where you will be spending time during the day. It was almost impossible for me to hold a phone to my ear while my head was in a face cradle. Phones with speaker mode enabled me to enjoy telephone conversations with friends.
- Place frequently worn articles of clothing in/on a low stool or box in the bedroom to avoid having to look up for clothing items in the closet and dresser. I wore a limited number of outfits during the six weeks; they repeatedly went from the washing machine back to the stool and box in the bedroom.
- While standing in face-down position, practice finding the locations of, and operating/using, light switches and thermostat controls on walls.
- Make a "Vitrectomy folder" with tabbed sections and keep it handy.
- Maintain a journal and keep a daily record.
Buy or borrow a personal CD/DVD player before surgery. Some people are able to watch a DVD while face-down, either from the Ergo Lounger chair or on their tray below the face cradle on their bed. Personally, I was unable to read or watch a DVD. However, I did use the player a great deal to listen to audio books, many of which are available from the public library. Make sure the CD/DVD player is plugged in and accessible (on the floor) and practice using it prior to surgery.
Audio books are available from most public libraries and can usually be renewed online or by telephone. Check with friends; they may have audio books that you can borrow. In addition to those checked out from the library pre-surgery, I made a list of other audio books of interest that someone else could check out for me during my recovery process. I also enjoyed listening to CDs of old-time radio shows, including mysteries, comedies, and westerns.
You can qualify temporarily to use Talking Books and a Talking Book machine for free (including free return postage) from the Library of Congress's National Library Service for the Blind and Physically Handicapped. With the new digital player that has recently become available, you may be able to download books using your home computer. (My doctor signed the application form, indicating that I had a temporary problem. The equipment was returned when my vision improved.)
"Catching Up" with Tasks
Think about tasks you would normally want to do in the six weeks following your surgery. I attended to the activities listed below prior to surgery. This advance preparation allowed me to feel relaxed and to fully concentrate on recovery during the face-down period.
Prepared small meals, baked breads, and made soup for the freezer; ground enough coffee for a month.
Paid all bills (in advance, when possible) and addressed seasonal needs (preparing for income and property tax, etc.).
Prepared visitors for what to expect when they visited. I sent an e-mail with a photo of face-down equipment so visitors would not be surprised at my appearance. You can find photos at vitrectomy.com and Kelly Comfort Solutions.
Planning a Special Project
Think about a special project or new skill you would like to learn during the recovery period. Keeping your mind occupied is very helpful. Try to identify a non-visual skill, e.g., learning a foreign language. Be sure you have the CDs or DVDs you might need handy. I decided to study Italian, something that had always been of interest. Though I found it difficult to concentrate, this activity was interesting and kept my mind productively occupied.
Wash your hair the day before surgery as you won't be able to wash it for at least a week. If you color your hair, be sure to do so before surgery since visitors will be seeing the back of your head during the recovery. Make sure a mirror and cosmetics are accessible.
Plan for Company
Think about events that would normally occur during your recovery period. My family usually celebrates birthdays with a dinner. Since my daughter-in-law's birthday was 10 days after my surgery, I prepared dinner for 20 people in advance and froze it. For the party, everyone was given an assignment, e.g., prepare a salad, buy a cake, open and set tables, wash dishes, etc. This worked out well, helped continue a routine, and was a positive experience for all while I remained face-down.
These aids helped me through my recovery period. Though I did not experience any side effects from any of the suggestions below, you should get your doctor's advice and guidance before trying any of them.
Although I'm not normally a drinker, wine helped me to both relax and fall asleep.
Biofreeze gel is a balm that helps deaden sensation. Rubbing it on my neck and shoulders usually enabled me to sleep 3-4 hours. An alternative cost-free suggestion is to try ice placed in a plastic bag and covered with a towel, or to try warm heat to relax. Heat or cold is an individual preference; I found cold to be more effective.
Lying face-down for extended periods tends to cause nasal congestion. Eucasol, an oil used to decrease the congestion caused by face-down positioning, was extremely helpful for me. Over-the-counter nasal decongestants may also be helpful, though prolonged use of these products can sometimes cause worsening of congestion.
- Tylenol PM was suggested by several people, but I did not use it.
Many eye drops are required following surgery. In the beginning, I had three different prescriptions, each to be given four times per day. After I developed high intra-ocular pressure, I was given additional drops. It's important to keep track of the time and dosage of all of your medications. I set my cell phone alarm to ring every six hours to keep me on schedule with my eyedrops.
Although my doctor said that I could be face-up for brief periods to eat and drink, patients who had gone through the surgery advised me to try to do so while face down. To eat, I found it helpful to sit in a regular chair with my head down and push the chair away from the table, with the plate on my lap. It was even more helpful to put a tray, atop a bean bag or small pillow for additional height, on my lap. Flexible straws can be used for all drinks, including coffee and wine. Be careful not to burn yourself while drinking hot liquids through a straw.
Again, these are things that I found extremely helpful during my recovery. Discuss these options with your doctor before trying them.
Neck and shoulders become very sore while in face-down position. I found massages to be extremely helpful. Check with your health plan to see if massage is covered or discounted. If anyone (or a group of friends) wants to get you a great gift, suggest massage. Many people contributed and I had massages every few days. These were extremely helpful.
Change Positions and Equipment
Keep changing positions! Move frequently between the sitting position and lying position to give your neck and shoulders a rest. I frequently changed positions from the Ergo Lounger, to the kneeling massage chair, to the bed (with face cradle and mat), to kneeling on the floor (while face-down), to lying on a sofa with my head hanging off the arm at the end. My home has a split-level room. That allowed me to sometimes lie on the floor of the upper portion with my head hanging over the stairs leading to the lower portion.
Even though I bought a fleece cover for it, the face cradle still rubbed my skin uncomfortably. I found that a U-shaped "Sqush" neck pillow, placed atop the fleece cover of the face cradle (with the closed end of the U supporting my forehead) was softer on my face. The "Sqush" pillow is primarily a travel or therapy neck pillow with a soft silk-like cover that is filled with tiny polyethylene beads.
Shoulder and Neck Discomfort
The face-down position can cause a lot of discomfort in the shoulders and neck. My physical therapist suggested piling towels or a folded pillow under each shoulder while lying down to help alleviate some of the strain. There are also stretches you can do to help relieve the discomfort. Talk to your doctor or physical therapist for recommendations.
Riding in A Car
When riding in a car (doctor's appointments and any other necessary trips), be sure to bring a pillow to provide the height and support necessary for maintaining face-down positioning.
- Suggest that your guests wear interesting socks/shoes since that's what you will be looking at!
- Get a pedicure before surgery (I'm sorry that I did not do so) and paint each toenail a different color or design.
- Maintain a sense of humor and encourage your guests to do so. Children enjoyed seeing my "Torture Chamber," the name we gave to the sleeping face-cradle arrangement at the foot of the bed! A friend laughingly commented that it was disconcerting talking with me "while your head is in your crotch"!
Copyright © 2010, Joy R. Efron, Ed.D.