R Venkataramanan

R Venkataramanan

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R Venkat's Blog
"To be an Inspiring Teacher,one should be a Disciplined Student throughout Life" - Venkataramanan Ramasethu

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Tuesday, May 25, 2010

“SURVIVING” RECOVERY FROM MACULAR HOLE SURGERY

“SURVIVING” RECOVERY FROM MACULAR HOLE SURGERY:


HELPFUL HINTS FROM ONE WOMAN’S EXPERIENCE

© Joy R. Efron, Ed.D.



ABSTRACT: The author was diagnosed with a full-thickness macular hole (January 2009) and had a vitrectomy (March 2009). One year post-surgery, her visual acuity had recovered to 20/25 and distortion was practically non-existent. This article provides information, resources and motivation for macular hole patients to assist in complying with post-surgery face-down positioning in order to help maximize visual outcomes.

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INTRODUCTION

What is a Macular Hole?

Symptoms

What Takes Place during Surgery for a Macular Hole?

Why Is Face-Down Positioning Required Following Surgery?

How Long Must a Patient Remain Face-Down?

Why Is A Subsequent Cataract Surgery Usually Required?

What Outcomes Can Be Anticipated?



FACTORS CONTRIBUTING TO SUCCESSFUL OUTCOME

A highly skilled surgeon

Information, resources and support

Maintaining face-down positioning and use of equipment

The presence of a helper you trust

Visitors

IMPORTANCE OF FACE-DOWN POSITIONING

GENERAL PRECAUTIONS

SPECIFIC SUGGESTIONS TO MAINTAIN FACE-DOWN POSITIONING

Vitrectomy (Face-Down) Equipment

Advance Preparation

Sleep Aids

Eye Drops

Eating/Drinking

Comfort Techniques and Aids

"Silly" Suggestions



AFTER FACE-DOWN POSITIONING IS NO LONGER REQUIRED

CATARACT SURGERY

OTHER CONCERNS

AUTHOR’S CONTACT INFORMATION

ACKNOWLEDGEMENTS



INTRODUCTION



The purpose of this article is to assist patients facing surgery for a macular hole. The required face-down positioning following surgery is extremely uncomfortable and challenging. However, maintaining that position is essential to maximize functional vision recovery. I have had an extremely successful recovery and the purpose of this article is to offer hints and tips to others to assist in “surviving” this difficult post-operative period. Suggestions discussed were very beneficial to me. With adaptation for individual needs, it is hoped that many of these ideas may be of value to others. Throughout the article, various resources are mentioned. Since I live in Southern California, several of the specific resources refer to this geographic area.



What is a Macular Hole? The macula is the area of central vision in the retina. A macular hole should not be confused with macular degeneration or a retinal detachment. The eye is filled with a gel-like substance called vitreous, which helps maintain the shape of the eye. As people age, the vitreous starts to shrink away from the retina. This is normal and usually causes no problems. In isolated cases (about three per 1,000 people over the age of 60), some resilient fibers refuse to let go of the retina. Essentially, a “tug-of-war” takes place with the body of the vitreous shrinking while the “stubborn” fibers hold tight to the retina. This “tug-of-war” can cause a hole in the macula. Once a hole is formed, the body’s defenses create scar tissue on the retina. The hole and the scar tissue cause blurriness and visual distortion.



Symptoms: A macular hole is characterized by blurry vision (both near and far) as well as visual distortion. My story: Following 42 years as an educator of blind and visually impaired children, it was a great surprise to me to suddenly experience a visual impairment on a first-hand basis. While driving in January 2009, I became aware that the painted highway lane markers appeared to be extremely wavy when viewed through my left eye. Everything (whether near or far) was blurry. A visit to the ophthalmologist determined that I had a full thickness macular hole (through all layers of the retina). During the two months between diagnosis and surgery (March 2009), my vision continued to deteriorate. Every horizontal and vertical line appeared to have at least five “S” curves. The City looked devastated, with buildings at eccentric angles. At times, while I was looking at a person, it would suddenly appear as if his/her head would shrink to a miniscule globe sitting on the neck. Items appeared smaller with my left eye than with my right eye. Scanning became extremely difficult, i.e. while walking in a grocery store, items on shelves appeared to be jumbled together. While trying to read, letters were skewed and wavy. Letters become smaller while reading across a line of print. My corrected visual acuity had deteriorated from normal to less than 20/200. All visual tasks had become fatiguing and additional lighting had become critically important.



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What Takes Place during Surgery for a Macular Hole? Surgery consists of a vitrectomy (removal of the vitreous), peeling of the scar tissue that formed over a portion of the retina, and insertion of a gas bubble in place of the vitreous.



Why Is Face-Down Positioning Required Following Surgery? The pressure of the gas bubble, over several weeks, causes the hole to close. However, since gas rises and the macula is located at the back of the eye, the patient must be face-down following surgery for the gas bubble to be properly positioned to exert the necessary pressure on the macula.



How Long Must a Patient Remain Face-Down? There is no definitive research relative to either the number of hours per day or the total number of days a patient must be face-down. Some doctors suggest two to three days; others suggest six weeks or until the gas dissipates. Due to the lack of research, I tried to contact other people who had been through a similar experience. Through networking with friends and professionals, I spoke with individuals, from Massachusetts to Hawaii, who had gone through macular hole surgery. Based on their informal reports, there appeared to be a dramatic correlation between visual outcome and compliance to the face-down regimen with respect to number of hours per day and the total number of days.



Based on my doctor’s recommendations and my own research, I was face-down for six weeks following surgery. For the first 29 days, this meant face-down positioning 24 hours per day, with the only exceptions being four brief periods per day, when I rolled onto my back for eye drops. For the next 14 days, I was face-down at night and during most of the day. Face-up periods were brief.



It was extremely unpleasant, but I was goal-directed and determined to do everything in my power to contribute to the best possible visual results following surgery. Patience, perseverance and determination paid off.



Why Is A Subsequent Cataract Surgery Usually Required? The gas bubble causes a cataract (in patients who have not previously had cataract surgery). Thus, a follow-up cataract operation is required, usually within six months to a year following the macular hole surgery.



What Outcomes Can Be Anticipated? According to the literature, most patients get some visual improvement following surgery, but outcomes vary greatly among patients. It can take a year before maximum visual improvement occurs. One year post-surgery, my visual functioning has far surpassed expectations. Visual acuity in my operated eye is 20/25, with very minimal (insignificant) distortion, and image size is essentially the same with both eyes.







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For more information, Google “Macular Pucker” and “Macular Hole”. Three suggested sites are:

http://www.nei.nih.gov/health/pucker/pucker.asp

http://www.nei.nih.gov/health/macularhole/macularhole.asp

http://vitrectomysolutions.com/whyfacedown.asp





FACTORS CONTRIBUTING TO SUCCESSFUL OUTCOME



I am extremely fortunate. I feel that my successful outcome is due to a highly skilled surgeon and my strict adherence to the six-week regimen of face-down positioning. Remaining face-down for six weeks would not have been possible for me without the assistance of others, face-down positioning equipment, mentoring and encouragement by others who have gone through macular hole surgery, and support of family and friends. Essential factors to consider include:



1. A highly skilled surgeon: Make sure you have a highly skilled, experienced retinal surgeon. Ask a lot of questions, including how many vitrectomies and macular hole surgeries the doctor has performed as well as the frequency of performing those operations. Ask about the surgeon’s anatomical success rate, i.e. percent of holes that close following surgery and the incidence of holes that later reopen. (According to the literature, about 90% of holes close following recovery from surgery; about 15% of those reopen.) Ask about the surgeon’s functional success rate, i.e., improvement you might anticipate in visual acuity. (The literature provides nebulous information, such as “…most patients improve two lines on the Snellen chart…” or….”….regain half their vision…”) The subsequent cataract surgery on post-macular hole patients presents special challenges for the surgeon. Make sure you have a highly skilled cataract surgeon who has successful experience with post-vitrectomy patients. If you were measured for a cataract replacement lens prior to macular hole surgery, ask if you should be measured again, prior to cataract surgery. (See Cataract Surgery, p. 15, for more information.)



2. Information, resources and support: In addition to asking questions of your doctor,

you might research (i.e. Google, etc.) information about macular holes, macular hole surgery, vitrectomy, vitrectomy equipment, face-down equipment. If you can, talk with other patients who have been through successful macular hole surgery and recovery. You might ask your surgeon for patient contacts. I was fortunate to obtain valuable information, resources and support from both professionals and other patients.













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3. Maintaining face-down positioning and use of equipment: This is critical in order to achieve a successful outcome. As brutally uncomfortable as this is, a successful visual outcome is well worth considerable efforts. (Though not necessarily a "compliant" person, I was compulsively compliant during my recovery.) I don’t believe that strict compliance would have been possible for me without the use of appropriate equipment. (See “Vitrectomy (Face-Down) Equipment” section on pp. 6-8 of this article for specific recommendations as well as recommendations if your health plan does not cover rental of vitrectomy equipment.)



4. The presence of a helper you trust: I am incredibly grateful to my husband and highly recommend that a person who lives alone tries to arrange for household and related help in order to maintain the positioning. If you live alone and finances are a problem, check with your health plan or your county/state/Medicare health services department to see if you qualify for short-term in-home supportive services during your recovery period.



5. Visitors: Many people are “private” and wish to be alone when not feeling up to par. However, visitors can be a huge help in keeping your mind occupied. I am very grateful to friends and family who called, visited, sent food and provided a variety of diversions. Playing simple board games with my grandson as well as Scrabble with friends was possible while face-down.





IMPORTANCE OF FACE-DOWN POSITIONING



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. So, every time you lift up your head, it is 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. (See “Vitrectomy Face-Down Equipment,” Sec. a (6) on p. 7.)













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GENERAL PRECAUTIONS



1. Eye shield: Wear an eye shield while sleeping during the first week post-surgery.



2. Plane travel; Do not fly for several months or go above the altitude where the surgery is performed. (The gas bubble expands with altitude, due to the drop in atmospheric pressure; expansion can cause dangerous pressure within the eye.)



3. Washing: Do not get your face wet for several days.



4. Hair: Use dry shampoo for the first week or 10 days. (Walgreen’s Pharmacy carries a dry shampoo product.)



5. Swelling: Your face may be swollen for quite awhile on the operated side; this is normal.





SPECIFIC SUGGESTIONS TO MAINTAIN FACE-DOWN POSITIONING



The following was helpful for me, and I hope that some of this information will be helpful for you. 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 www.vitrectomy.com, under the heading “Tips and Hints”.



1. Vitrectomy (Face-Down) Equipment



Without strict compliance to the face-down positioning, surgery is most likely 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. It will literally take an act of Congress to change Medicare’s position.



Some health plans cover equipment rental for recovery from macular hole surgery. (Note: As of April, 2010, I have spoken with patients who were covered for rental of vitrectomy equipment by Aetna, United Health Care, Cigna, and Blue Cross PPO.)



Therefore, ask your doctor or your health plan administration if you have this coverage. You must get a letter from your doctor stating that the post-vitrectomy face-down equipment is “medically necessary” for patients who have undergone



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vitrectomy surgery and who are required to maintain a face-down position in the 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 adaptations, i.e. improvising with the use of pillows, blankets and towels. 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.



You can use the internet to research, i.e. Google, "Vitrectomy Equipment" or "Face-down Equipment". I did so and called various companies to compare products and prices.

My choice was www.vitrectomy.com.

Phone number is 877/848-7328. (They were very knowledgeable and helpful.)



a. The following equipment was rented, most of which can be seen at www.vitrectomy.com.

(1) Kneeling massage-type chair for day use

(2) Head support/cradle for foot of bed and seated support

(3) Adjustable tray placed below the face cradle

(4) Arm rest shelf

(5) Sternum pad

(6) Two-way mirror to watch TV and see/interact with people

Note: Rental cost (March 2009) was $165 for the first week and $105 for each subsequent week; no shipping charge.



b. The following equipment was purchased, most of which can be seen at www.vitrectomy.com.

(1) Basic mat (to relieve lower back strain while sleeping on one’s stomach

(2) Fleece cover for the head rest (the cover of the face cradle can rub and become uncomfortable on the face; the fleece is much softer; see further discussion under Face Pillow on p. 13).

(3) BioFreeze gel (to relieve neck and shoulder pain). See 3b under Sleep Aids, p. 11. For additional information, see http://www.biofreeze.com.



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c. Look at the equipment on-line. Some of this equipment may be found at major massage supply stores. Try to locate one where you can sit in/on various pieces of equipment produced by a variety of manufacturers. In Southern California, a massage supply store that carries both massage and vitrectomy equipment, is:

Massage Central

12235 Santa Monica Blvd.

Los Angeles, CA 90025

(310) 826-2209

www.mcla.com.



d. I purchased an Ergo Spa Lounger, which is essentially a patio lounge chair with a large opening for the face. (It was probably designed for use at the beach for someone who wants to suntan their back and/or read with the book placed on the sand.) The Ergo Lounger worked well during the day. Coffee and other beverages (used with a flexible straw) and snacks can be placed on the floor below the face opening. Since the sides were hard, I draped a pillow over each side of the chair, under my armpits. A personal DVD player, for listening to Audio Books, was also placed on the floor.



The Ergo Lounger is available on-line from The Comfort Store.

The store site is www.sitincomfort.com.

The Ergo Lounger can be viewed at the following page: http://sitincomfort.com/erulbech.html.

The Comfort Store

459 Orange Point Drive Suite H

Lewis Center, Ohio 43035

888/867-2225



e. High table: 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.





2. Advance Preparation



Anticipate what might be needed and make it accessible. The following may sound very compulsive, but for me, it was helpful to easily access what was needed. Obviously, everyone has different needs and different living styles.









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a. Make needed/desirable items accessible; Prior to surgery, try to anticipate what will be needed in each room and make those items easily accessible.



(1) Set up trays/baskets on the floor in each room with items needed, e.g. toothbrush & cosmetics in the bathroom; phone, paper and pad by the bed, etc.



(2) Organize all important papers so they are easily accessible



(3) Place frequently-used food on the lower shelf of the refrigerator door.



(4) Place bowls/cups/straws/cereal on a low (slide-out, if possible) shelf.



(5) Set up a power strip by the bed 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, Eucasol oil for congestion (see Sec. 3 (c) on page 11), eye patch and tape (first week), eye drops, tissues, hankie, audio books, pad and pen, etc.. A similar arrangement can be placed in a box on the floor near the Ergo Lounger.



(6) 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.)



(7) Practice tactually finding the locations and operating/using light switches and thermostat controls on walls, while standing in face-down position.



(8) Make a "Vitrectomy folder" with tabbed sections and keep it handy.



(9) Maintain a journal and keep a daily record.



b. CD/DVD player: Buy or borrow a personal CD/DVD player. 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. 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. Note: Make sure CD/DVD player is plugged in and accessible (on the floor) before surgery and practice using it.



c. Audio Books: Audio books are available from most public libraries and can usually be renewed on-line or by telephone. (In Southern California, the Sherman Oaks Branch, Los Angeles Public Library, has an excellent selection.) 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



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out for me during my recovery process. (I also enjoyed listening to CD’s of old-time radio shows, including mysteries, humor and westerns.)



d. Talking Books: You can qualify temporarily to use Talking Books and a Talking Book machine for free (including free return postage) from the National Library Service for the Blind and Physically Handicapped, Library of Congress. For information, eligibility, and application, see: http://www.loc.gov/nls/. Call (1-888-657-7323) and ask to be connected with the library serving your area. With the new digital player that has recently become available, you may be able to download books using your home computer.



Residents of Southern California can contact the local library at the Braille Institute, 741 N. Vermont, in Los Angeles. See: http://www.brailleinstitute.org. Then click on Become a Patron to download the application. Phone numbers are (323) 660-3880 or (323) 663-1111.



(My doctor signed the application form, indicating that I had a temporary problem. The equipment was returned when my vision improved.)



e. Preparing Ahead--”Catching Up” with Tasks: Think about tasks you would normally want to do in the next six weeks. The activities listed below, attended to prior to surgery, allowed me to feel relaxed and fully concentrate on recovery during the face-down period.



(1) Prepared small meals, baked breads and made soup for the freezer; ground enough coffee for a month.



(2) Paid all bills (in advance, when possible) and addressed seasonal needs i.e. in my situation, prepared for income and property tax.



(3) 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 the following sites:



http://www.vitrectomy.com/?gclid=COjjn5HAzaACFQtrgwodQi7Wzg

http://www.kellycomfort.com/



f. 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 CD’s or DVD’s handy. (I decided to study Italian, something that had always been of interest. Limited progress was made. It was difficult to concentrate, but this activity was interesting and kept my mind productively occupied.)



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3. Sleep Aids



a. Wine is relaxing for many people. (Although I’m not normally a drinker, wine helped me to both relax and fall asleep.)



b. BioFreeze gel is a balm that helps deaden sensation. After having it rubbed on my sore neck and shoulders, I would start shivering (within about 90 seconds) and would feel incredibly cold in the application area. I would often have to wear a turtle neck as well as cover myself with several blankets. This 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.)



For more information about BioFreeze, see http://www.biofreeze.com. Be sure to click on FAQs, located at the right side on this web page. BioFreeze gel is available on-line. I purchased mine from Vitrectomy.com.

(Disclaimer: This helped me and I had no adverse side effects. You may wish to check with your doctor.)



c. Nasal congestion: Lying face-down for extended periods tends to cause nasal congestion. Eucasol, an oil used to cut down on congestion, caused by face-down positioning, was extremely helpful. Eucasol is a natural product containing eucalyptus, peppermint, rosemary, pinetree and cinnamon oils. It is made in Switzerland and approved for use in the U.S. A few drops sprayed on a hankie that was placed on the tray below the face cradle eliminated all congestion problems. Though advertised to kill viruses and bacteria and relieve breathing, I can only vouch for the fact that it helped me tremendously to avoid face-down congestion.

(Disclaimer: This product helped me and I had no adverse side effects. You may wish to check with your doctor.)



For more information, you can Google "Eucasol Spray" or view the following website:

http://www.swissjustusa.com/htm/productos_sku.php?p_id_idioma=2&p_id_pais=10&p_codigo=69

The Southern California distributor is Kathy Yriarte, 661/478-4852.

Her e-mail address is: Kathy_yriarte@swissjust.net.



d. Tylenol PM was suggested by several people. (I didn't use it.)



4. Eye Drops



Many eye drops are required following surgery. In the beginning, I had three different prescriptions, each to be given four times per day. (Later, I developed high intra-ocular pressure and had to add additional drops.) It's important to keep track of the time and



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dosage. Cell phones can be set to automatically ring multiple times daily with one setting. Setting the cell phone alarm to ring every six hours kept me on schedule.



5. Eating/Drinking



Although told that I could be briefly face up to eat and drink, patients who had gone through the surgery advised me to try to do so while face down.



a. Eating; 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.



b. Flexible straws: 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.



6. Comfort Techniques and Aids



a. Massage: 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.

Kaiser patients can get information about discount massage through the Kaiser website: www.kp.org. When on the Kaiser site, click on the following links, in the following order:

Health Plans and Services Member Discount Programs Complementary Health and Fitness Programs Find a Provider Service Type Massage.



This only covers in-office massages. After calling several people on the list, I found some who would come to my home. In addition, friends were asked for referrals of massage therapists who would come to my home.

HINT: 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.

(The massage therapist I preferred and who helped me greatly was Colette Widrin, 310/492-5014.)



b. Change positions/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 (all with face down) to lying on a sofa with the 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.





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c. Face pillow: Even though I bought a fleece cover, 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. These are available at some chain drugstores and over the internet. You can Google "Sqush pillow".



d. “Opening up the shoulders": David Kurihara, Kaiser Physical Therapist, explained to me that much of the discomfort due to face-down positioning is the result of the shoulders being in a forward and depressed position, which pulls on the scapular and neck muscles.



Two techniques help alleviate this problem:

(1) "Open up" the shoulders by standing in a doorway, holding on to a door jamb and stretching your chest and shoulders several times a day (but maintain face down positioning).

(2) Pile towels (or a pillow, doubled) under each shoulder while lying down.





7. “Silly” Suggestions



a. Suggest that your guests wear interesting socks/shoes since that's what you will be looking at!



b. Get a pedicure before surgery (I'm sorry that I did not do so) and paint each toe nail a different color or design!



c. 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”!





AFTER FACE-DOWN POSITIONING IS NO LONGER REQUIRED



1. “Jiggling” feeling: The gas bubble is slowly absorbed. When (finally!) face-down positioning is over, the remaining gas bubble jiggles and it may feel as if part of your face is underwater. People who can't close one eye (the operated eye) can wear a patch to keep from feeling woozy.



2. Avoid sleeping on your back: When (finally!) face-up, do not sleep on your back until the gas bubble is completely gone. Rationale: While on back, the gas bubble comes

in contact with the lens and accelerates the development of a cataract. (Of course, if



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you've had cataract surgery prior to macular hole surgery, this won't be of concern.) The ophthalmologist ideally wants to delay cataract surgery as long as possible following macular hole surgery.



What to expect: My personal experience is that macular hole recovery consists of

four phases over a period of a year.



a. Phase One is the face-down positioning discussed in this article.

b. Phase Two is a slow, gradual improvement in vision.

c. Phase Three is a deterioration of vision due to the development of a cataract.

d. Phase Four is a dramatic improvement in vision following cataract surgery.



Milestones differ for individuals. Information below represents a summary of material from a journal I kept, monitoring my visual progress. If anyone wishes additional details, I will be happy to share those with you.



During face-down positioning (Phase One), vision improves from light perception to color recognition to shape recognition to finger counting to central vision a few inches from the operated eye. With good lighting, I was able to read newspaper headlines and a few sentences of an article for a short period of time. Both eyes tired easily.



After face-down positioning is completed and the gas bubble has been absorbed, there is a slow, gradual improvement (Phase Two). Three months after surgery, my visual acuity had slowly improved to almost 20/200 and the distortion had become less significant. However, very good lighting was essential. With new glasses, my visual acuity in the operated eye measured 20/60, but that was not a functional measurement. I was unable to coordinate the very different images in the two eyes and could only use the glasses during seated activities, such as watching TV. Although I “read” the newspaper, it was very different than my previous meticulous reading. It took several sessions, due to tiring, and consisted only of the beginning of articles of interest. Reading outside in the sunlight was helpful. Large print books, available from most public libraries, were much easier to read and could be read for a longer period of time.



Phase Three is a deterioration of visual acuity due to the rapid development of a cataract (resulting from the gas bubble). Five months after surgery, my visual acuity had deteriorated to only being able to count fingers a few inches in front of my eyes. Excellent lighting became even more critically important than previously. In dim lighting conditions, especially at night, vision in the operated eye was reduced to shape recognition with no details. I was still unable to wear the glasses for more than a few minutes due to problems trying to reconcile the very different images. Glasses were becoming less and less helpful. My functional vision was dependent upon the unoperated eye, which tired easily. Reading had become more of a struggle, regardless of print size.



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Phase Four is cataract surgery, which is almost always required within a year of macular hole surgery. (Mine was performed seven months after the macular hole surgery.) Cataract surgery usually results in a dramatic improvement in visual acuity. The day after my surgery, visual acuity was measured at 20/40. This continued to improve for a few months. At eleven months post-macular hole surgery, my visual acuity had improved to 20/25 and distortion was nearly non-existent. With good lighting, I could read regular sized print. Glasses enable me to read small print comfortably.





CATARACT SURGERY



Cataract surgery is almost always required within a year following surgery for a macular hole. Ask your surgeon if your vitrectomy poses any particular risks or challenges and what kind of visual improvement you are likely to achieve.



Important advice: Most retinal surgeons measure the length of the eye prior to macular hole surgery in case they cannot see well enough through the lens to operate, thereby necessitating simultaneous macular hole and cataract surgery. (Surgeons typically only perform these two operations at the same time if absolutely necessary.) After the macular hole closes, the length of the eye may be shorter by the depth of the macular hole.



Therefore, the depth of the macular hole should be subtracted from the previous measurement. Ask your doctor about this calculation and/or if you should be measured

again (prior to cataract surgery) as the depth of the macular hole (though very small) may affect the choice of lens implanted during cataract surgery.





OTHER CONCERNS



1. Glaucoma: Surgery is traumatic. White cells start to proliferate; they can cause inflammation and can attack the eye. These white cells are held in check with steroidal drops. However, in about 15% of cases, patients react to steroids with high intra-ocular pressure (glaucoma), which can potentially cause serious eye damage. Usually the high pressure is temporary. In my case, the pressure was very high and it took two different types of glaucoma medication to control (lower) the pressure to a normal range. I was insistent on monitoring the pressure on a regular basis to make sure it didn't damage the eye.



2. Monitor the Good (Unoperated) Eye: According to the literature, 20-30% of the people who have a macular hole will end up getting one in the second eye. Therefore, it

is important to have frequent, periodic checks of the second eye. Monitor that eye for distortion and other vision problems. You can download an Amsler grid from the internet. It looks like graph paper with a bold dot in the center.

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An Amsler grid can be downloaded from http://www.allaboutvision.com/conditions/amsler-grid.htm.

For additional information, you can Google "Amsler Grid”.

Look at the grid weekly to make sure that all vertical and horizontal lines appear to be free from distortion, i.e. straight and parallel. At the first sign of distortion, make an appointment with the retinal specialist.





CONCLUSION



Face-down positioning, required for successful recovery from macular hole surgery is challenging and uncomfortable. With determination and innovation, it CAN be done and the results are worth all the effort.





AUTHOR’S CONTACT INFORMATION



Don't hesitate to contact me if I can be of any help or support. This recovery process is not easy, but it's worth the great effort required.



Best wishes!

Joy R. Efron, Ed.D.

joyrefron@yahoo.com

323/464-1877 (h)

323/854-1772 (c)

April 2010





ACKNOWLEDGEMENTS



Grateful appreciation is expressed to the following:

Dr. Fawaz Wagih Kaba, retinal surgeon, Department of Ophthalmology, Kaiser Los

Angeles Medical Center;

Dr. Mathew Yen Wang, cataract surgeon, Department of Ophthalmology, Kaiser Los

Angeles Medical Center;

Leonard Efron, my husband, who provided devoted support;

A variety of patients who had gone through macular hole surgery, in particular Christiane

Eminon, Pasadena, CA, and Jean Worfolk, Cottonwood, AZ for generously sharing

their experiences and providing guidance;

A large number of professionals, family members and friends who provided information

and gave generously of their time and support.







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