Suggested list of questions for your strabismus surgeon

Blue question mark
Blue question mark, public domain.
George Alexanian recently provided our Eyes Apart Strabismus Support Group with a list of questions he recommends for you to ask your strabismus surgeon. He did a great job with the list in the group, and has since refined it further. George graciously allowed me to post the list here so it can be easily found by group members as well as those visiting our Eyes Apart blog. George writes:

I am not a doctor and have no medical training, so I can only make these recommendations from my experience as a strabismus surgery patient. On the first consultation, I would ask the questions which will give you confidence in this surgeon, but only ask if he has not already answered them. Tell him that if he does not mind, you have some questions to put your mind at ease:

  1. How long have you done adult strabismus procedures, and how many have you done and with what success?
  2. What is my eye deviation in diopters?
  3. What is the largest diopter deviation you have done successfully? (Mine was 50.)
  4. How old was your oldest patient? (Only if you are older than 50-I was 63.)
  5. Do you see any potential complications in my case? (previous scarring, astigmatism, etc.)
  6. What percentages of your patients have eyes that have not drifted for at least five years?
  7. Will you get insurance approval for me? If the insurance will not cover it, what is my total out of pocket cost? (He may refer you to the person who handles scheduling, insurance approval, and payments.)
  8. Could I get a couple of recent patient references?

Once you have decided on this surgeon, then during the second visit or pre-op, I would ask:

  1. Do you recommend cutting muscles in both eyes or just one eye if the other is straight? (My surgeon held my straight eye in position while cutting two muscles in my deviated eye, but most will recommend doing both eyes for best results and reducing chance of double vision.)
  2. Do you recommend adjustable sutures or fixed sutures? (I had fixed, but most will recommend adjustable also for improved appearance and reduced chance of double vision.)
  3. How much greater are my chances of a successful procedure with adjustable sutures and doing both eyes at one time?
  4. How many muscles will you reposition in each eye?
  5. How long will the actual procedure take? (about one hour for me for one eye).
  6. What is the recovery time with adjustable and fixed sutures? (Adjustable will take longer with some discomfort,) and how long will I be out work or school? (In my case, I went to work two days later, but I am the boss and have a desk job.)
  7. Do you use the same anesthesiologist for all your strabismus procedures?
  8. What do you consider a successful procedure (How many diopters deviation and no double vision?)

You may have other questions, but the above are the most important in my mind.

In my case, in 2005, the surgeon scared me out of it with her recommendation of having to do both eyes, possible infection, over-under correction, and double vision, along with the possible complication due to scaring from a similar 1956 procedure. So I procrastinated until 2008. When all this possible negative stuff comes out, remember that this procedure has been around since the 1950’s (I had my first one in 1956 in France), so it is very common by now.

George Alexanian’s “Suggested list of questions for your strabismus surgeon” is Copyright by George Alexanian and Eyes Apart, and may not be used without written permission.

George has been helping people at Eyes Apart for a bunch of years now. We appreciate him so much. George “adopted” the My Strabismus Surgery area of Eyes Apart and provides excellent support for those considering or recovering from surgery. George also helps people via our email support group.

You can click the “older comments” link at the bottom of the My Strabismus Surgery page to see more comments, including George’s very helpful and encouraging responses through the years. Thank you, George, for all you do!

Foundation promotes strabismus education, brain tumor awareness

Tiffany Johnson
Tiffany Johnson, Founder and CEO of "Your Eyes Are Your Heart, Inc."
What do you get when you cross a brain tumor fighter with strabismus? You get Your Eyes Are Your Heart founder and CEO, Tiffany Johnson. Tiffany grew up an only child in Brooklyn, New York. Even as a child Tiffany dealt with vision problems. She visited the ophthalmologist as scheduled and was always told to wear reading glasses. As Tiffany entered her teens, her doctor began to notice she had a droopy right eye lid.

In 2002, at the age of twenty, Tiffany moved to Richmond, Virginia, where she pursued an undergraduate degree at Strayer University. On her first visit to the Virginia Eye Institute in Richmond, doctors noticed her right pupil did not dilate and they saw a tumor on her optic nerve. Everything she had started was about to come to a halt when they told her she had a brain tumor and needed treatment as soon as possible. After weeks of testing, the tumor was found to be a benign pituitary brain tumor, and Tiffany was advised to begin Gamma Knife treatment that consists of brain surgery and radiation. The Gamma Knife procedure was successful at shrinking the tumor but it would be there for the rest of her life. A year after the procedure her right eye started to turn inward, and she was told she had a condition called strabismus.

Having now lived with strabismus for many years, Tiffany knows firsthand the misconception of the condition. She has dealt with self-esteem issues. “Having strabismus, people tend to give a lot of probing stares that make you feel uncomfortable,” Tiffany writes. She began to wonder how anyone could love a person who looks like her. She stopped looking people in the eye because she was afraid of people judging her.

Today Tiffany continues to do research about brain tumors and strabismus so she can help herself and others. Thanks to her doctors, teachers, family members, and friends, she was eventually able to see what they see–how beautiful she is beyond her eyes.

Your Eyes Are Your heart, Inc.Tiffany Johnson established the non-profit Your Eyes Are Your Heart Foundation to assist families who face the same challenges she has with the brain tumor and strabismus. She believes through research and fundraising, “we can make a big difference in people’s lives. We focus on treatment, vision therapy and self-esteem programs for youth and adults dealing with the probing stares and questions about strabismus,” Tiffany writes, “and we bring awareness to brain tumors. We believe our programs we will give back to our community through health, education and nutrition.”

To learn more about Tiffany Johnson and Your Eyes Are Your Heart programs, visit Your Eyes Are Your Heart, Inc.. You can also visit Your Eyes Are Your Heart, Inc. on Facebook. Tiffany also has a Facebook group: I’m living with strabismus-How to love your eyes for life.

Adjust rear-view and power side mirrors to eliminate blind spots

Driver's side mirror
Driver's side mirror|courtesy Flicker:NguyenDai
Laura shared in our Eyes Apart Strabismus Support Group recently how adjusting rear-view and power side mirrors helps eliminate blind spots when driving. Laura gave me permission to share her item here. “I originally heard it on the radio once,” Laura writes, “so I didn’t exactly come up with it but fortunately I remembered. It’s my ‘version’ of the explanation.” Here is Laura’s tip:

If you have power side mirrors (the type with the stick thing you turn wouldn’t work so well), you can adjust your mirrors to an angle that eliminates (or at least shrinks) your blind spot. Of course this is only the normal driving blind spot, not the crossed eye blind spot, but it can still help. Here’s what to do:

Sitting in the drivers seat, lean your head against the window and adjust the drivers side mirror until you can see down the side of the car, with the car just barely on the inside edge of the mirror. Then lean over into the space between the two front seats and look at the passenger side mirror, and adjust until you see down the side of the car like you just did on the drivers side. Then when you’re sitting straight in the drivers seat you won’t see your own car in the mirrors but you will see other cars going out of your rear-view and into what used to be your blind spot.

Now you have much less blind spot; don’t completely trust that you have no blind spot at all especially with an eye that doesn’t look in every direction it’s supposed to, but this should help a lot otherwise.

Here are some links about this:
How to adjust your mirrors to avoid blind spots This reference from Car and Driver uses helpful graphics to illustrate the mirror adjustments.

Adjusting your mirrors correctly This link from Smart Motorist provides an animated graphic that shows both correct and incorrect mirror adjustments.

Eliminate blind spots If you want more visual explanation and don’t mind the somewhat shaky camera here’s a video.

My Travelin’ Eye: book review

My Travelin' EyeMy Travelin’ Eye by Jenny Sue Kostecki-Shaw

“When I was born, I came out looking both ways.” That’s how Jenny Sue begins her beautifully illustrated children’s book, My Travelin’ Eye. She writes, draws, and colors her “own experience as a seven-year-old with a lazy, wandering eye, glasses, and a patch” into a charming memoir story for children.

Jenny Sue helps kids relate by sharing how she was sometimes made fun of, but she quickly turns the disadvantages of a travelin’ eye into a positive experience. Most of us with strabismus bemoan how our eyes won’t work together. But Jenny Sue discovered that, “It’s sort of like having a twin.” Read the book to see how she took advantage of each eye’s own unique functions, apart from the other.

Children will relate as she shares how scary it was when her good eye was patched and she was given big, thick, red glasses. Vision suffered, teachers chided, and kids pointed. She cried herself to sleep, but next morning she told her mother how she felt, and her mother helped her design her first fashion-patch. The patch and glasses did their magic, her vision improved, and soon she was making a new fashion-patch each day. She was the envy of her class as “all the kids at school wanted to wear a ‘fashion-patch,’ but they couldn’t, not without a note from their ophthalmologist.” Jenny Sue illustrates 2 full pages of this 11.2 x 9.3 inch book with 24 different life-size eye patch designs that will get you started helping your child design eye their own creative eye patches.

Finally the day came — her travelin’ eye had “woken up,” and her eyes were learning to work together. The patch was gone, but the glasses were here to stay. So Jenny Sue and her mom decorated them into fashion-glasses, and…you guessed it! Once again, all the kids at school wanted their own fashion-glasses, “but they couldn’t, not without a special note from their ophthalmologist.”

Jenny concludes her book with an inspirational note for all of us who see the world in different directions: “My travelin’ eye still wonders sometimes,” Jenny writes, “but that’s the true nature of an artist — to see the world in her own unique way.”

This book is almost as much fun for adults as it is for children, and it will quickly become a favorite. Purchase the My Travelin’ Eye today. You’ll be glad you did! You can also visit the My Travelin’ Eye page at Jenny Sue’s Dancing Elephant Studio for more information.

Disclosure: I received a complimentary copy from the author for review, but my review is my honest opinion of the book.

New northern California strabismus support group

Susanna wearing prism glasses for Vision TherapyYesterday I shared Susanna’s story. Her photo here shows her wearing prism glasses as part of her home vision therapy. Susanna is currently organizing a northern California strabismus support group. You can read more about this in Susanna’s words below. Just before this went to post, she sent me a note that the support group is not limited to those doing vision therapy, but for all strabismics. The first meeting is tentatively planned to be held in Berkley near the end of July. Email Susanna at the address she provides for further information. Susanna writes:

Do you see two moons and stare at broccoli?

Or perhaps you find the little circles on orange peels and the space between orange pulp to be incredibly captivating while your friends and family don’t understand why you just won’t stop staring and eat.

Are you an adult doing vision therapy in the San Francisco Bay Area and want to meet other adult VT patients on the road to 3D?

I’d like to meet other adults who are doing vision therapy in the San Francisco Bay Area so we can meet in person and swap stories, find ways to provide emotional support and take walks together to point out the new things we see. I live in Cupertino in Silicon Valley. Depending on where people are, we can find a central spot and talk, walk and eat together and comment on the wonderful texture and depth of our food.

So far, I have only had cyber contact with other strabismic or amblyope adults who are undergoing this life-altering therapy and I’d like to meet people in person.

I’ve been in vision therapy for 16 months and I’ve found it to be the most alienating journey I’ve ever been on. When I describe to people who do see in 3D how I find myself staring at carpets, refrigerator doors, citrus peels, trees, rain drops on rose petals, etc, few understand what I am going through. Here I am, a globetrotter quoted in the press for travel advice, and I am spending my time in awe with my jaw dropped staring at the gym carpet — a far cry from the Forbidden City or The Great Wall of China. One person told me that he only fixated his gaze on fruit when he was on drugs. Absent any mind altering illegal substances, the transition to binocular vision can definitely resemble an altered state of consciousness. Being in it alone makes it all the more difficult and frustrating.

By the way, if you’re not keen on broccoli either as an object of admiration or as a food to eat, we can look at other things that have space between branches or have other qualities that require depth perception. With the good weather here, a walk in the park with other monocular to binocular Bay Area people would be excellent.

Susanna, nisamsuzi AT yahoo.com