Julie sent in this update to her daughter’s journey. Many thanks again, for sharing! You can read more of Julie’s writing at Balancing Mama. – Ann Z
I have learned a lot about personalities this year, especially how different personalities can affect our medical journey through strabismus and surgeries. Physicians, believe it or not, are people. They each have their own personality, their own way of doing things, and a uniqueness in communicating with others. When it comes to strabismus and other pediatric eye issues, personality can be as critical to a good outcome as ability.
I shared our confusing and frustrating journey a few months ago in this post: Measure Twice, Cut Once. We first visited a Pediatric Ophthalmologist based on our regular pediatrician’s recommendation and his close location to our home (we’ll call him Doc #1).
Doc #1 is very skilled and well known. But as we quickly found out, he is also extremely confident in his abilities and not much of a talker. He knows what he wants to do, and he just wants to do it. When we thought that we were going to have one surgery and be done with it all, this was fine. We liked his go-get-‘em attitude and overflowing confidence. But as surgery number one failed and number two was scheduled, we began to be uncomfortable with his technique. Medically, he is brilliant. But we could not freely ask questions without receiving very short answers. I have some background in research and analytics and my husband is an engineer – we are the type of people who ask a LOT of questions. We want to understand every step of the process. This doctor seemed to think we just did not “need” the details.
So along came doctor #2. I found him via online searches. He has the same qualifications and associations as Doc #1, plus he had a few glowing reviews on a website or two. His office is less convenient to our home, especially in city rush hour. But oh my, what a difference he made! Doc #2 is never in a rush. He spends a long time with us in his office and patiently answers all of our questions. He is generous with details. His compassion is obvious and puts us at ease. He is the physician who suggested glasses before diving into a third surgery. He takes his time. He measures over and over and over again.
We know now that a pediatric ophthalmologist will be part of Amelia’s life for a while, so it is crucial to have one whom we really like and trust. We are in a relationship with him. We need to be able to trust him, he needs to be able to listen. He needs to see things through our eyes, and we need to be able to hand our sweet girl over to him.
My husband and I handed her over to him last Thursday for surgery number three. It was still a difficult thing to do, but we were more confident this time than ever before. Because he explained. And because he cares. He even called me twelve hours after surgery to check on his patient. I could barely talk, I was so surprised. Doc #2 had reassuring words for me and many cheers for our brave girl. I will happily drive to future check-ups, knowing I have the right person to care for this little lady who holds on to my heart.
— Julie is a part-time working mom, mother to 4-year-old Amelia, and the blogger behind BalancingMama.com.
Beautiful writing 🙂 ,Prayers for your daughters success in her surgery, I understand how frustrating the process of finding a doctor is, but exploring all options at least as a parent will let us know we are doing all we can. At what age did you realize something was going on with her eyes? Also have you ever heard of Osteopathic medicine? This is something new to me but have heard success stories with straitening out the eyes.
Thank you Julie, and Little Four Eyes, for sharing this very important information. Medical professionals all have their own piece of the “expertise” market. And sometimes it is more important to do just what you did, shop around, than to accept the first (and closest) advice that we get. I wish you, your daughter and your family nothing but bright skies!
Thank you! Britney, we always noticed her eye turning out when she was very tired, but otherwise she could hold it straight. Last November, we took her to get it checked – boy were we surprised when we found out she needed surgery! Apparently some of her inability to sit still and watch tv was due to her eyes moving when she tried to relax – how annoying! Hers is muscle only, her vision is fine. So we’re actually quite lucky, just need to get that placement right!
What an important story to share, if you don’t mind me asking what city do you live near or what state, I am having somewhat of the same issue. Just wondering if it could be the same doctor.
My son has esotropia at 24 mths old and I have decided to forego surgery and try vision therapy instead. From my research I found the “functional” success rate of surgeries to be in the low 30% and like you many patients required repeat surgeries as they aged. I also found that even when performing surgeries, therapy is key for developing stereopsis. Fwitw, I would encourage you to talk to your doctors about incorporating or exclusively using vision therapy instead of further surgeries. Just my 2 cents and I wish you all the best.
I haven’t really been told anything about vision therapy. How do you go about finding someone that does this?
I just googled for hours and hours to try to get more info before agreeing to let me son go under the knife. My family and I are currently in Korea and it is really tough to find experienced vision therapists as the standard treatment here is surgery with no other options provided. Here is a link to the search results.
Even post surgery, many sources claim that therapy makes a difference. I don’t think it can hurt to try and we are just now starting our sessions with a therapist. Truthfully, I am sure about giving VT a try but not so sure about the therapist I found and in Korea there just aren’t many therapists. In any case we are going with 27 diopter prism glasses to start off which are actually quite pricey here compared to the US, but what parent is not willing to open her wallet and spend hours and hours researching and visiting doctors if there is a chance something will help, right? My son has 30-35 diopter esotropia so hopefully we will notice some improvement with time.
It’s tough to stay positive but I am trying my best to keep my chin up for my son…..all of you can relate. Information is power and never shy away from asking your doctor nagging questions or getting second or third opinions.
Link to a locator, however read up on VT first and decide if this is for you and your child. Good luck
My daughter has gone through this exact thing, and it is so incredibly helpful to hear your story. My husband and I share all of these complicated emotions. Surgery 1 left one eye severely and constantly crossed. Surgery 2 did little to fix this and created a new vertical misalignment. We switched to Dr #2 and also pursued consultation out of town. The case was presented at a regional conference. Muscle restriction caused my scarring was deemed the most likely cause. Surgery 3 conservatively explored for restriction and repaired it where found. Surgery 4 has seemed to correct horizontal but vertical issues persist. As you say, what began as a problem obvious most only to family has become a very obvious difference. We also have an incredibly compassionate Dr #2 who communicates frequently and extensively. That said, I long for the pre-surgery stage of glasses, which over-minused her vision, and worked as long as she wore them. The underlying issue remained and we decided to go down this road. Fortunately she attends a small school where a culture of kindness prevails. We can only give her muscles time to continue healing. There is some hope that glasses may help for her near vision, where the current problem is most visible. Dr #2 thinks the fact that her distance gaze is now solid is promising. We can only hope that time brings better results. It is hard to keep a positive attitude however.