Why Can’t We All Just Get ALONG???!

Braden was diagnosed with Esotropia in 07, had *successful* surgery in 08!!  He is evaluated every 3 months by our PO.

Braden

Many moons ago, (or so it seems!) in September of 2007, I had an appointment for my son Braden to get his eyes checked. Although my pediatrician insisted that Braden’s eyes were NOT turning, my gut told me differently. I made an appointment with an eye doctor on my own. Sure enough, Braden’s eyes did intermittently turn in. Upon first hearing Braden’s diagnosis of Esotropia I was told that I could do surgery, however, it was only cosmetic, and would not correct his vision. We would begin with glasses, continue with eye exercises when he was older, and VIOLA- Problem Solved. Completely ignorant of the now all too familiar terms- strabismus, alternating Eso, High AC/A, convergence insufficiency, DVD, etc- and only a mom to a darn cute little boy with an eye turn- I was thrilled. Of course I’d want to avoid surgery at all costs.

I was on cloud 9 walking out of the door to the Optometrists, I could definitely deal with glasses and eye excercises. I was so happy that I had taken the initiative to go to the Doctor’s against my Pediatricians opinion.

Fast-Forward 2 months, and upon a visit to my pediatrician’s office, the Dr. who was seeing my son (not my pediatrician) stared intently at my son and asked what I was planning on doing about his eyes. I proudly told him that I had taken him, myself, to an Optometrist and what the Optometrist had told me, and watched his face scrunch in horror.

“I think you need to get a 2nd Opinion” he said “from an Ophthalmologist, if it was my grandson, he would have already had surgery”

I walked out of the pediatrician office jaded with doubt.

I spent the next week researching Strabismus. I read testimonials of parents who completed Vision Therapy, such as

Since eye therapy started I have noticed many different improvements. A few are:

  • Better peripheral vision
  • My eye stays aligned better [initial diagnosis: strabismus]
  • I notice more things
  • When writing on unlined paper I can keep my writing more aligned
  • When someone points out something in the air, or elsewhere, I can find what they are showing me

Those are just a few changes. Vision Therapy has really helped. The word about vision therapy needs to get out more so more people can know about it. Teaching vision skills in school would cut down on a lot of frustration for children, parents and teachers. Schools should have eye exercises in their curriculum.

-Jean R. Fisher and son, 9/28/99

and articles like:

Your brain directs and controls your eyes and eye muscle surgery is not brain surgery. Cutting and moving the eye muscles will not automatically change the brain or the signals it sends to the eye muscles. This is why patients’ eyes often “go back” or deviate again after surgery. Frequently, then, the surgeon recommends a repeat surgery. It is important to understand that while eye muscle surgery can improve cosmetic appearance, it does not necessarily improve eyesight or vision.

Numerous peer-reviewed scientific studies report success rates for eye muscle surgeries ranging from 30% to 80%. In those studies, the success is sometimes defined as cosmetic improvement only. “Cosmetic improvement only” means that, following the eye muscle surgery, the patient’s eyes maintained a straight and aligned appearance, but improved vision was not achieved.

-(http://www.strabismus.org/surgery_crossed_eyes.html)

I spent the next week crying.

Reluctantly, I made an appointment with a Pediatric Ophthalmologist, my husband, my sister, and I drove 40 minutes to meet the most pompous woman I had ever met in my life. She promptly told me that Braden’s condition was only fixable by surgery, the glasses he was wearing were “useless” and the occuladars that were put on by my Optometrist was nothing but a bunch of “Hocus Pocus”. When I asked her about the opinion of my Optometrist of Braden not needing surgery, and that his condition could be treated with glasses and Vision Therapy was when I learned the Golden Rule of Strabismus- Ophthalmologists and Optometrists are arch enemies. I’m talking Batman and The Joker, without the suits and makeup. This woman was so annoyed with me that I think her head may have spun around a few times.

How was I supposed to know? As a parent, don’t we trust what the “professionals” have to tell us. And now, here I was, with 2 completely different opinions, from 2 people who certainly knew more about eye conditions than I did.

I left the office crushed.

I immediately made an appointment with my Optometrist, he took an hour of his time to explain to me “his side”. Why he felt the surgery wasn’t necessary, and it was very clear that he did NOT think highly of this Ophthalmologist.

He looked me in the eye, patted my leg and told me “I can tell you with 100% certainty, you should NOT do surgery. Especially not right now, IF you have to have surgery- you can always do it later. There is no “magic age” that you need to have the surgery done before.”

I knew it! I walked out of the Doctors office happy again.

At our follow up appointment with the pompous Ophthalmologist, I came prepared. I had spent hours researching and writing down all of my questions. It wasn’t that I was necessarily against surgery, I just had many questions that needed to be answered before I was about to let anyone “slice” my child’s eye muscles (as I had read on many Pro VT web pages). I needed to find out exactly why 2 people would tell me such clearly different opinions. I was trying to find out questions such as: Will he ever gain depth perception, Is Depth Perception the same as Binocular Vision, What exactly is fusion, and where does it play a role in all of this. Is it possible that his eye would be overcorrected and turn out. Complete with pomposity and eye rolls (yes EYE ROLLS from a DOCTOR!!!) she told me basically that I had NO right researching information on this topic. That was the problem with the Internet, this should be left to the Medical Profession because not just anyone can learn these things. She also told me that she took great offense to even comparing her opinion to an Optometrists, after all, SHE had gone through MUCH more schooling than “they” do. I kindly (or maybe not so kindly) told her that I myself WAS a professional, I was perfectly capable of researching, and that we would be getting a second opinion. Thank you very much.

I went home and spent another week researching Strabismus. I spent another week crying.

As I dove deeper into research and began meeting people with Strabismus, I began to learn more and more about the condition and how it affects the adults afflicted with it. The relentless teasing by peers, and even adults. I read story after story of people who had multiple surgeries and were still battling with this condition. I met people who were angry with their parents because they never had the surgery. I met people who just plain and simple hated life because of this card they had been dealt.

I made another appointment with another Ophthalmologist.

This time, we traveled an hour away. The Doctor took Braden’s measurements and told us that the glasses were definitely working, however, he needed a stronger prescription. He couldn’t indicate at this time whether we should do surgery. He was great, he answered all of my questions, without even batting an eyelash, let alone rolling an eye!

Off I went, new prescription in hand. Sure of myself that I was heading down the correct road in my sons treatment. I liked this man. I took the script into my Optometrists office (which is where I had been getting Braden’s glasses) and you guessed it- The optometrist was in COMPLETE disagreement with this new sript. I could see the horrified look on his face, he told me straight up he didn’t agree, but for me to do what I thought was best.

I filled the script.

3 weeks later at our follow up appointment with our new Ophthalmologist, I was told even more interesting news. I was told that Braden’s Esotropia fell into the category of High Accomodative Accomodation Ratio- High AC/A ratio. Meaning that he turns more at near than he does far. However, surgery was almost a definite at this point. It would just be a matter of how they could find a happy medium between to the 2 turns. He patted me on the leg, looked me in the eye and told me “With 100% certainty, you SHOULD do surgery” He wanted to schedule the surgery, because by this time we were getting real close to the 2 year “magic number” time frame-(you know the one that didn’t exist according to my Opt.)

When I asked him his opinion of Vision Therapy, he told me he felt it would do nothing for Braden’s eyes. It is beneficial for SOME types of problems, but not Braden’s specific type of Strabismus. Of course, my Optometrist disagreed. By this time, I really wanted to lock all of these doctors into the same room, with me as a mediator and just let them go at it. I just couldn’t (and still can’t) understand WHY if they both claim to know so much about this condition, they can’t get together- FOR THE GOOD OF THEIR PATIENTS- swallow some pride, and listen to each other. Would it be too much to ask for these people to *gasp* work together. Isn’t that what the medical profession is supposed to be about- aren’t they supposed to be in the business of HELPING their patients, no matter what?

I left the office with a script for bifocals, and a surgery packet, and a nauseated stomach. The surgery was scheduled.

The Optometrist wouldn’t even fill the script he was in such disagreement, he also told me that it had now come to a time where I needed to make a decision. I needed to either follow his advice or the Ophthalmologists advice. He told me that if I decided to go the surgery route, he didn’t want to lose Braden as a patient, and he could “fix” him afterwards.

Braden HATED his bifocals. I HATED any professional that began with an O.

In a last ditch attempt I made an appointment with yet another Ophthalmologist.

1 week before Braden was scheduled to have surgery with Ophth #2, we saw Ophth #3. He told me from the get go that he didn’t want to know what anyone else had to say. He wanted to start fresh, do a complete exam, give me his opinion, and THEN we would talk.

He did just that, and what he said were things that I had heard from all 3 of the previous doctors combined. He didn’t agree completely with any 1 doctor, however, at least there were some agreements. He told me 1- The glasses were helping, 2- He definitely was in TOO strong of glasses, 3- The bifocals were not helping, 4- He DID not have High AC/A ratio esotropia, 5- He needed surgery.

He also told me (which I already knew) that he was one of the first Ped Ophth’s in our state and that he’s done over 16,000 surgeries for this. Promptly put, He was the best. He was confident, not pompous.

At this point, for whatever reason, I came to terms with it. All of a sudden I understood. Braden needed surgery, and this man was going to do it. I drove home in peace.

I’m not sure what caused this epiphany- was it just that I was worn down, I couldn’t take any more hour long trips, to and from Ophthalmologists only to be told something completely different each trip, was it because I am an impatient person and couldn’t imagine waiting for years to begin treating my sons eyes with Vision Therapy, or was it because God had led me to this person and was now telling me- this is right, you have found the right person. I don’t know, I just know that I sighed a HUGE sigh of relief and scheduled the surgery.

I dismissed all of the other opinions, I told myself there is NO looking back. Once I did the surgery, whatever the result, there would be NO what if’s. Thankfully, the surgery has been successful up to this point and I haven’t had the chance to second guess myself. Braden’s eyes are beautifully straight, and he seems to be using them together.

Will Vision Therapy be a part of our future? I don’t know, if I feel it will help my son- Absolutely.

My point of this VERY long blog- (sorry!) is this: With this condition, you have to trust your gut, you have to be aggressive and find out every bit of information you can, and arm yourself with that information when you go to appointments. You HAVE to be an advocate for your child. Because unfortunately, I truly believe that there are MANY professionals out there for one reason, and that is the six figured life-style it brings them. It sickens me to know that there are people on both sides of this condition who both TRULY believe what they are telling us, and it sickens me to think that they both REFUSE to believe there is another way.

Why Can’t We All Just Get Along?

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17 responses to “Why Can’t We All Just Get ALONG???!

  1. Thanks for writing all this up, Linda. I find it fascinating (in a not so good way in this case) to read about such strong professional disagreements. It sounds like you found a good doctor at the end. It really makes me value our ophthalmologist all that much more, since she has never made us feel stupid for asking questions, and has

    I have to say, it makes me want to visit that first arrogant ophthalmologist and ask her if she’s read any studies about whether rolling her eyes will cause permanent eye strain (well not really, I hate confrontation, and I never come up with snappy things to say to people).

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  2. HA- I know- You should have heard all the responses I came up with in the car on the way HOME from her office!!!
    Oh well- That which doesn’t kill us makes us stronger right??!

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  3. Linda,

    Thank you for posting this. This is a reality that parents with children with visual conditions often face. Ophthalmologist are very well trained in surgery but not vision. Optometrists are very trained in vision but not surgery. They have hard time communicating.

    Since there is frequently disagreement between professionals, I suggest the following to parents: 1) If a mom is certain she saw something, she is almost always right. 2)Relentlessly question your doctor about your child and if they refuse to answer questions, be suspicious. 3) A 2nd or 3rd opinion is never a bad idea and you should never feel bad about requesting one.

    Fortunately, there are Ophthalmologist and Optometrists that do get along. Unfortunately, you didn’t encounter them.

    If it is OK with you, I’d like to link to this post from my blog with some comments for parents.

    -Dr. B

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  4. Of course that is fine to link this. I truly feel that now that I have been through this, I must be a voice for parents who are also going through it. I have heard of Optometrists and Ophthalmologists working together- just not in my “neck of the woods”- Those who find such doctors are VERY blessed!!

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  5. Hi Linda. I’m in the Eyes Apart yahoo group and saw your recommendation to Jenn about this web site. I’m glad I found it!

    I was brought to tears reading your story because I can’t imagine how stressful it must have been to get so many different opinions and not know who to believe. I was fortunately to connect with our PO and he has been incredible. Even with that encouraging PO/patient relationship, it was very stressful to make decisions on treatment.

    My heart really goes out to you and your son.

    I totally agree with following your gut!

    Lori Clendenen
    (my daughter Zella was diagnosed with infantile esotropia at 7 months. She is now 20 mo. old)

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  6. Hi Linda, very interesting blog. My daughter McKenna just had her first PO appointment and through confusion we were told she has Left eye Esotropia-possibly accommodative. She needs +4 lenses for both eyes-which tells me she is farsighted. I say that because the PO never said it. He ofcourse told me to look at his site to read about eye muscle surgery. Well, I spent many of late nights reading many many sites and came across the same information you did regarding the “cosmetic” perspective of the surgery. If the eyes are working together perfectly, then multiple surgeries would be needed. And how the brain may still tell the eye to turn regardless of cutting the eye muscle. This scared me more than enything. Should I risk multiple surgeries? Or should I just focus on treatment with glasses and as long as she can see (with both eyes) let her go through life with a possible target on her back for teasing? But, I cannot jump ahead of myself- we haven’t even gotten the frames in the mail yet!!! I am just trying to focus on working with her to keep her glasses on so that effective results can be measured. I am sure that the Rx may need to be changed several times, though I am hoping that with glasses she will be able to see better. Our biggest concern is that she is almost 16 months and she doesn’t walk yet. I was told it may be due to her not being able to see things clearly and is afraid to let go of things. With glasses we are hoping that she will get more confident.
    Doctors rarely like to be questions, though some take pride in having informed patients. The handful that despise it, make it very clear. THEY ARE THE DOCTOR!! The Internet can be a really good or really bad resource for information. It is important to get information from reputable sites- by either hospitals or medical journals. You should never feel though that you cannot question a doctor about a diagnosis or steps in treatment. This is your child’s life!! If a doctor ever makes you feel that you don’t have that right to be an informed parent then turn around and walk out. And, if they don’t want you to do your own research then they better be willing to answer all of your questions completely and patiently.
    I am glad to hear that though you clawed your way through the process, everything is turning out well.

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  7. Welcome!
    I know exactly how you feel, the differing opinions of treatment are enough to make anyone go crazy. I was completely in your shoes about doing surgery= I REALLY did NOT want to, in fact, I was still unsure until the first visit with our 3rd PO. It was only then that I finally felt at ease.
    The stories that I read of adults with strabismus are heart breaking, this is one of the biggest reasons I went for it, I had also read somewhere (who knows where at this point) that VT for Braden’s specific type of eso was not particularly effective.
    I spent a lot of time actually reading medical studies (luckily I am getting my Master’s so I have access to many journals through that).
    The worst for me was when they kept telling me it has so much of a better chance before 2 to gain depth. (Of course VT specialists disagree) but I kept thinking WHAT IF? Many research articles I read confirmed this, and it really made me nervous to just ignore it. I could not find very many articles on VT through medical journals. I am not in any way discounting it- I just feel that it is just starting to be researched. There are a few out there though.
    Best of luck, I will be thinking of you as you begin your journey. TRUST YOUR GUT!! : )

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  8. Linda, What a good mommy! Thanks for sharing this. I’m so glad you found peace about your decisions. These decisions are SO hard to make especially when you are challenged and contradicted at every turn. You persevered through the confusion and now your baby has straight eyes. How encouraging! Luckily, we had a great experience with our one and only PO, and he answers questions, takes time, and has surgery as an option if needed, but we’re trying to get straight eyes with patching and glasses.
    My son is 2 1/2 and right after his second birthday his left eye started turning more and more. I had ALWAYS thought that I saw them cross but it was subtle and nobody else saw it, including the pedicatrician at the wellness checks. It got WAY worse almost overnight and nobody could miss it.
    Moms DO know what they are talking about even if nobody else sees the problem. I wish I hadn’t been right, but at least its fixable.
    Thanks again!

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  9. Fantastic post! I can TOTALLY agree with you and can totally understand where you are coming from. It could have been me writing it. I was sitting shaking my head yes as we too have had different opinions on treatment. I absolutlely agree with you that Optometrists and Opthalmologists are arch enemies! They definitely come at the problem from totally different angles. It is very hard to decide what to do when yes, as you say, they are supposed to be the experts yet in the end you are left to decide what to do and you are dealing with your childs vision and essentially their quality of life for the rest of their lives! It’s a big call. I am always seeking opinions and searching for new information too. I just want someone to tell me this is what you need to do and it is the right thing and she will be ok but I know also that eyes are unpredictable especially at a young age and every child will react differently to different treatment, a lot of the time they dont actually know what way their are going to go. You are also right in saying the doctors generally dont like you coming across like you know too much and hate the word internet. However they need to know that of course parents are going to research all they can and try to find out as much as they possibly can. Luckily I think I have finally found a doctor I am happy with, he is brilliant with children and seems to be The expert on strabmisus where we live and I have to trust someone at this stage. So I am going to do what he says to the letter and cross my fingers and toes he is right and it is the absolute right thing for my little girl. Thank you for taking the time, it is great to read something that I can TOTALLY relate to. Ingrid

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  10. Pingback: update on Braden - before and after surgery pictures « little four eyes·

  11. My daughter, Tess, who is 4 months old has been seen by three pediatric ophthalmologists (PO) in the past 3 weeks and each is diagnosing her with Accomodative Esotropia, but giving us various recommendations on what to do: put glasses on her now OR to “wait and see”. The first P.O. diagnosed her eyes at +8, second at +5.5 and third at +7.25 (both eyes equal). We brought her in because we were noticing that her left eyed crossed occasionally (once a day or once every two days and mainly happening when she looked a horizontal blinds). Needless to say, we are completely confused by the lack of agreement between the 3 PO’s. I agree with Linda’s suggestion to lock all of these doctors in the same room and just let them go at it, for the sake of my child. Their ego’s cannot allow this it seems. What IS consistent between them was thier lack of experience with AE in infants this young. Anyone out there with a similar experience of Accomodative Esotropia in a 4 month old?

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  12. Hi Linda! I have some questions for you if I could. I am going through this exact same thing. We’ve seen 3 doctors (1 ophtomologist and 2 optometrist) I can tell that you really did your homework and I’m wondering how the surgery results are now that it is a while since he had it. I’m not sure if my son is in the same situation but I’m just so confused as to who to listen to. Did you son have esotropia because he was farsighted? How long until you decided glasses were not working? Thank you Linda 🙂

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  13. Hi Linda, I have just experienced the exact thing with my daughter. A am just worrying how surgery went. Thank you so much for your post.

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  14. I meant to say ‘wondering’ how surgery went. I am certainly worrying all the time though! Would really love to be able to contact you.

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