As Co-Chair for COVD’s Social Media Committee, I was recently drawn to a response on Twitter from one of our followers. A 26 year old woman living with strabismus, reached out and was eager to tell her story in order to help others in their search for answers. Michelle Lovely has had 5 unsuccessful surgeries for her condition and is now finding that vision therapy is helping her in a way that previous treatments had failed.
Can you explain what first brought you to seek vision therapy?
Originally, my mother asked my Pediatric Ophthalmologist in the mid-90s if we could try vision therapy, and they told my mother not to waste her money because it does not work in someone over the age of 6. So we decided to go a different route and continued to try surgery.
Fast forward to 2013: I had been talking about getting contacts for a while (since I am now dependent on my eyeglasses). Since my Pediatric Ophthalmologist did not prescribe contacts, I had to find an optometrist that prescribed contacts.
The Optometrist I went to, Dr. Joseph Rouw, happens to be involved in vision therapy, as is his wife, Dr. Nadira Shadeed (Dr. Shadeed is Board certified in vision therapy by COVD). They have a private practice that focuses on vision therapy. Dr. Rouw asked me if I had ever considered trying vision therapy, and gave me some information to look at before I picked up my contacts the following week. After doing some research myself, (after five failed surgeries in the past) I thought I would give it a try because I had nothing to lose. I am so glad I took the chance and tried vision therapy.
You mentioned you had a number of surgeries for strabismus. Did your surgeon ever suggest that there may be another alternative to treat your condition?
No. As far as I can remember, my mother had to initiate the discussion on alternative treatment options for my strabismus. That being said, I was patched (first at 18 months, and then again as a toddler) after my first failed surgery at the age of two. I had to wear eyeglasses in third grade, which I never wore until I hit driving age. Do I think the alternatives we tried worked? Maybe for a while. I do believe patching my stronger eye saved my weaker eye from completely shutting down. My family moved out of state after my first surgery, and my parents talked to other Pediatric Ophthalmologist about other alternatives. Each one felt like my Atlanta doctor was the best and if they said surgery was the only way to fix the issue, they did not want to contradict them.
How soon after your surgeries did you, or your parents, realize that the surgeries did not work?
With each surgery, there was a gradual drifting of the eye that was worked on. However, I can distinctly remember after the fourth surgery that it took a week for me to figure out that the surgery failed. I was older, (14-years old) and was more conscious of what was going on with me medically. There was a distinct “pop” I felt, and knew my eyes went back to the original position. I will never forget that sensation.
Even after the history of failed surgeries, I am now considering trying one more time. Through vision therapy, I have trained my eyes to work together and work straight. Before, I did not have the control I have now. Dr. Shadeed once told me that the eyes have a better chance in staying together if the person does vision therapy (before and after surgery) to reinforce the now surgically straight eyes. Before vision therapy, (if you asked me if I would consider another surgery) it would be a fast NO. Now with a recommendation from Dr. Shadeed and Dr. Rouw, I would chance surgery one more time.
How long after beginning vision therapy did you start to see changes?
The first time I noticed something new was during the very first appointment. We were working on teaching my eyes to go straight. By the end of the lesson I was more conscious about what my eyes were doing. The first time I saw depth was about 7 months into therapy. It was an amazing day! The exercise was called Aperture Rule.We had worked on it before, but could never get past level 1 or 2. I never noticed the depth until we started again in 7 months. Something just clicked that day. I got all the way to level 12 AND noticed the depth! I am currently working on Eccentric Circles, which is a step up in difficulty.
What do you think is the greatest difference in philosophy between corrective surgery and vision therapy?
First off, I want to say there is nothing wrong with going the corrective surgery route; you just have to do your homework. Make sure it is the right option for you and at the time. It seemed like the best option I had to “fixing” my eyes.
That being said, I think the greatest difference in philosophy is whether you want a quick “fix” or not. With corrective surgery, each surgery was tailored to the specific muscle you manipulate. However, there was no follow-up therapy or special instruction, just “hope for the best” and wait to see if this surgery worked.
With vision therapy, it depends on the complexity of the case, how long you will be in therapy, and if it will work at all. You again have to do your homework to decide if it is worth the money to try months of therapy that may or may not work, and insurance may or may not pay for. With vision therapy, you are training your eyes to do something they likely have never done before (which is WORK TOGETHER), which takes time, patience and dedication.
What surprises you most about vision therapy?
The eye is a muscle, and like any muscle it atrophies and strains depending on the level of use it gets. I would have to say the thing that surprises me the most about vision therapy is how a few simple exercises can manage to accomplish what corrective surgery could not. I had five corrective surgeries between the ages of two and fifteen, and all that accomplished was getting them straight for maybe a week or two. With vision therapy, I can keep my eyes straight for periods of time and now I am starting to see depth perception, which I never have been able to accomplish in the past. I am beginning to get all the pieces of stereovision and working on having them all at once.
What “aha” moments have you had in therapy?
I had read Dr. Susan Berry’s book Fixing My Gaze after my optometrist suggested it. As I was reading about her journey to stereovision, she was able to put our world in words I have never been able to do. I was fascinated and frightened at the same time. Here I am 26-years old and I have lived in a flat world all my life, and it was all about to change. I almost quit therapy right there, but knew I had to try.
I think after each milestone there was an “aha” moment of where the exercise “clicked”, and I mastered the lesson for the day. The first “aha”moment was September 29th, 2013, one month after I started vision therapy. I had been working on the Brock String for 2 weeks and finally saw the cross at the bead, and thought “So, this is what it feels like to see ‘normal’”. I got so excited about seeing the Brock String that I had to e-mail my therapist at that moment to share the news (even though it was Sunday evening). Dr. Susan Berry mentions a moment where the steering wheel of her car popped for the first time, and I had a similar moment with the television screen. I was concentrating on keeping my eyes straight. All of a sudden, the television popped away from the wall (which was amazing yet frightening at the same time). This was on January 28th. Also, at my most recent session, March 28th, I finally figured out the Aperture Rule. It was a big accomplishment for me. That was the first time I REALLY saw depth perception
What would you like to tell us about your therapist and doctor?
I am so thankful to the optometrist who recommended I give vision therapy a try. The decision was difficult for sure because I knew it would be a lengthy process and insurance most likely would not cover it. So I had to decide whether it was worth the money for something that may not work. My therapist is great, and for the first time I feel like someone is actually listening to and working with me. I have a complex medical history that goes beyond strabismus, and my therapist is the first doctor that I know of that took the time to try and piece the puzzle together to see how everything connects. After my first session, my therapist told me what I will be able to accomplish by the time I “graduate” therapy and I said, “When pigs fly!”. Well, I have already accomplished many things on her list. For instance, I can now catch a ball and balance on a BOSU balance ball. Never Say Never!
Thank you for reaching out to us with your story. What do you think we can do to get the word out about vision therapy so less people go through what you have been through?
Education. Find out what ALL the options are for your particular case. For some, corrective surgery may be the right option. For others, vision therapy would be worth the time and energy. Be your own advocate on if you want to try vision therapy instead of doing invasive surgery. Talk to your doctor. Chances are they will support you on it even if they do not agree with the philosophy behind vision therapy.
Thanks to Michelle Lovely for sharing her story. Dr. Joseph Rouw and Dr. Nadira Shadeed practice in Dacula Georgia (http://www.visiontherapy4kids.com).