Strabismus surgery experiences?

[Monica_in_Switzerland]

So my little guy has the most wonky cross eyes ever.  It's adorable and everything, but he probably won't want to look like a little loony bird forever.  His eye specialist has him in glasses and 3 hours of patching for his weaker eye, but luckily both his eyes work well and he has overall good vision, so we are not in danger of losing sight form a lazy eye.  Both his eyes just seem to wander around.  His follow-up from 3 months patching was cancelled due to CV19, but he's rescheduled for June.  It seems like surgery is probably the next step.  Anyone been through it with their kid or another loved one?  What can we expect?  He's 5.  

 

[prairiewindmomma]

We were offered surgery for Ds but committed to six months of vision therapy first. He made sufficient progress that he was able to avoid surgery altogether. We would not have hesitated to do it had vision therapy failed. His pediatric opthamologist was a bit surprised he had such success. His case was pretty severe.

[sassenach]

We did it for ds but that was so many moons ago, I don’t remember much. I do recall that it was a fairly easy recovery for him. 

[kbutton]

If you have access to a reasonable practitioner for vision therapy, it's worth a consult--my son's strabismus/convergence was not severe, so I don't have surgical advice. VT was life-changing though.

It's great news that your DS's vision is not in danger! 

[gardenmom5]

3 hours ago, Monica_in_Switzerland said:

So my little guy has the most wonky cross eyes ever.  It's adorable and everything, but he probably won't want to look like a little loony bird forever.  His eye specialist has him in glasses and 3 hours of patching for his weaker eye, but luckily both his eyes work well and he has overall good vision, so we are not in danger of losing sight form a lazy eye.  Both his eyes just seem to wander around.  His follow-up from 3 months patching was cancelled due to CV19, but he's rescheduled for June.  It seems like surgery is probably the next step.  Anyone been through it with their kid or another loved one?  What can we expect?  He's 5.  

 

It's not adorable - and when he's growing up with wonky vision because his eyes are fighting with each other (or worse, his brain blocks the input from the weaker eye and he goes blind in that eye) - he will most certainly NOT think "it's adorable".  (especially the headaches and fatigue it causes.)  what he looks like to other people is the least of the issues it causes. - though even people who aren't mean and teasing about it, will wonder if he's actually looking at them when he's speaking to them.

five is getting old for this - but not too old for it to make a difference.  they should give you exercises to do with him after the surgery.  do. them.

[Junie]

If I remember correctly, my mother had surgery for this when I was a child.  She still has a weak eye, but she was in her 20s when the surgery was done.

[medawyn]

My now five yo had surgery for esotropia at 18 months.  Her eyes were profoundly crossed inward.  She was completely unable to rotate her eyes outward.  Unusually her vision was equal in both eyes, and has continued to be.  Surgery was probably worse for me than her, and her recovery went fine.  She has patched off and on since the surgery to work on training her eyes to travel outward.  We had a first appointment with a vision therapist for last week, but obviously that will be rescheduled.  I don’t know that it’s necessary, but it’s a path I wanted to investigate just in case.  I waited until she was five and could actually give feedback/follow instructions.  Appointments with three year olds are squirrelly!

[prairiewindmomma]

I forgot to mention—ask about adjustable sutures. Sometimes they can go back in and tweak the next day if they need to make an adjustment. 
 

ITA that five is a bit late and that you should be focusing on getting good feedback to the brain. I would also really look at occupational therapy afterwards, particularly for things like dealing with objects in motion—throwing balls, playing soccer, etc.

[Amber in SJ]

I had the surgery when I was 3 years old.  My mom was very strict about the therapy.  I wore the glasses and an eyepatch forever, even to school.   My mom was so upset by looking at me with the skin colored eyepatch that every day she drew something on the eyepatch.  One day she drew an eye.  Seriously, an unblinking eye, because that is less upsetting than no eye, apparently.

Anyway, I had the one surgery if my kids needed it then I would get it done, but I think the therapy is the actual key to success, because my BIL had the same surgery and his parents never did the therapy and he has struggles as an adult with one of his eyes wandering when he is tired.

Amber in SJ

 

[gardenmom5]

Oh - because of his age, just a warning.  His brain has already decided what his visual input is, and that will have to be readjusted.  I walked into walls for months because the surgery made my vision even more wonky than it was beforehand.   the input did eventually adjust.

the Ophthal I had as a child didn't "believe in surgery" OR patching.  the moron.  the only nice thing I can say about him is he saved my vision in the weak eye.

[Monica_in_Switzerland]

2 hours ago, gardenmom5 said:

Oh - because of his age, just a warning.  His brain has already decided what his visual input is, and that will have to be readjusted.  I walked into walls for months because the surgery made my vision even more wonky than it was beforehand.   the input did eventually adjust.

the Ophthal I had as a child didn't "believe in surgery" OR patching.  the moron.  the only nice thing I can say about him is he saved my vision in the weak eye.

 

I appreciate your comments.  Obviously tone and sarcasm doesn't come across online, I DO think he looks adorable, but I also thought my two youngest looked adorable when born with congenital clubfeet, but they both received very intensive treatment for their feet for years because obviously medical conditions needs to be treated...

He's being seen at an excellent eye clinic.  He has not lost binocular vision and his "weak eye" is still very strong.  While strabismus can cause lazy eye and eventual vision loss, it doesn't always, and his hasn't, which is why he is older and still being treated with fairly conservative measures.   

[gardenmom5]

50 minutes ago, Monica_in_Switzerland said:

 

I appreciate your comments.  Obviously tone and sarcasm doesn't come across online, I DO think he looks adorable, but I also thought my two youngest looked adorable when born with congenital clubfeet, but they both received very intensive treatment for their feet for years because obviously medical conditions needs to be treated...

He's being seen at an excellent eye clinic.  He has not lost binocular vision and his "weak eye" is still very strong.  While strabismus can cause lazy eye and eventual vision loss, it doesn't always, and his hasn't, which is why he is older and still being treated with fairly conservative measures.   

I have vision in both eyes - I do not have binocular vision (it's actually caused more issues as I've gotten older.  I had surgery at 18 - when I was able to take control and go to a new Ophthal.).

so - I'm somewhat confused how a child with an active strabismus - a misalignment of the eyes -  can have binocular vision without treatment.  lazy eye is amblyopia. (had that too.)

[Monica_in_Switzerland]

5 minutes ago, gardenmom5 said:

I have vision in both eyes - I do not have binocular vision (it's actually caused more issues as I've gotten older.  I had surgery at 18 - when I was able to take control and go to a new Ophthal.).

so - I'm somewhat confused how a child with an active strabismus - a misalignment of the eyes -  can have binocular vision without treatment.  lazy eye is amblyopia. (had that too.)

 

My understanding is that his strabismus is due to eye strain.  During exe exams, when he focuses, he has no issues.  But his eyes fatigue quickly.  We had hoped the glasses would be enough to reduce strain/fatigue, but they have not helped enough to eliminate the problem.  

[kbutton]

8 hours ago, Monica_in_Switzerland said:

My understanding is that his strabismus is due to eye strain.  During exe exams, when he focuses, he has no issues.  But his eyes fatigue quickly.  We had hoped the glasses would be enough to reduce strain/fatigue, but they have not helped enough to eliminate the problem.  

My older son required significant fatiguing to show symptoms too. That makes me think that vision therapy that incorporates body work could be really helpful in your situation. I realize that's anecdotal. My son's therapy was a lot of bodywork and some convergence-specific stuff. 

Has his doctor given him a Brock string or any other exercises? How is his overall coordination and crossing the midline? My son had some quirks--he could cross midline, but he was imbalanced at midline. So, he swam with a "Nemo" fin, and if you asked him to fix it, he could fix the arm that was making small motions...but his other arm would become the Nemo fin, lol! 

Visually, as print got smaller and pages had less white space, he started having more double-vision and things like that. He also had major issues catching a ball--he was able to tell us a long time later that the ball would look fine until it got close, but then he would see it in a series of still shots, and he lost the ability to see how far away it was as it came in. But away from his body, he had depth perception. Not seeing approaching balls correctly would make him duck or move out of the way while trying to catch them. When he would bat for backyard baseball, he had to bat with his left hand if he wanted to actually hit it (he's right handed). He really didn't know that others didn't have the same issues, and we only sort of thought it was odd as there is precedent in the family for mixed dominance (and now we know it can be due to convergence, lol!). 

The more specifics you give, the more he seems like a good candidate for good VT. 

[prairiewindmomma]

Kbutton’s son’s experience sounds like that of my son, fwiw. My ds also had convergence issues.

 

[Splash1]

Both of my preemies have/had vision issues.

I have one child that did two rounds of vision therapy to control her wandering eyes.  One shut down when she got tired.  She wears glasses to help her eyes focus and help with the fatigue.  This type of strabismus has the most success with vision therapy option.  We tried glasses and patch option first.  She did the vision therapy at age 11 and she's now 18.  If she doesn't wear her glasses all day or has headaches it will still turn in a bit from fatigue but it's not often.

The other child had exotropia and he had two eye surgeries under the age of 3.  His eyes look great and function well.  No one can tell he's had surgery (eye doctors I mean) unless he tells them.  He is currently 22.

 

[Monica_in_Switzerland]

1 hour ago, kbutton said:

My older son required significant fatiguing to show symptoms too. That makes me think that vision therapy that incorporates body work could be really helpful in your situation. I realize that's anecdotal. My son's therapy was a lot of bodywork and some convergence-specific stuff. 

Has his doctor given him a Brock string or any other exercises? How is his overall coordination and crossing the midline? My son had some quirks--he could cross midline, but he was imbalanced at midline. So, he swam with a "Nemo" fin, and if you asked him to fix it, he could fix the arm that was making small motions...but his other arm would become the Nemo fin, lol! 

Visually, as print got smaller and pages had less white space, he started having more double-vision and things like that. He also had major issues catching a ball--he was able to tell us a long time later that the ball would look fine until it got close, but then he would see it in a series of still shots, and he lost the ability to see how far away it was as it came in. But away from his body, he had depth perception. Not seeing approaching balls correctly would make him duck or move out of the way while trying to catch them. When he would bat for backyard baseball, he had to bat with his left hand if he wanted to actually hit it (he's right handed). He really didn't know that others didn't have the same issues, and we only sort of thought it was odd as there is precedent in the family for mixed dominance (and now we know it can be due to convergence, lol!). 

The more specifics you give, the more he seems like a good candidate for good VT. 

 

47 minutes ago, Splash1 said:

Both of my preemies have/had vision issues.

I have one child that did two rounds of vision therapy to control her wandering eyes.  One shut down when she got tired.  She wears glasses to help her eyes focus and help with the fatigue.  This type of strabismus has the most success with vision therapy option.  We tried glasses and patch option first.  She did the vision therapy at age 11 and she's now 18.  If she doesn't wear her glasses all day or has headaches it will still turn in a bit from fatigue but it's not often.

The other child had exotropia and he had two eye surgeries under the age of 3.  His eyes look great and function well.  No one can tell he's had surgery (eye doctors I mean) unless he tells them.  He is currently 22.

 

 

 

Thank you, it's reassuring to know that not every case necessarily ends with surgery.  I think therapy might be the next step, but his last appointment being cancelled has sort of left me in the dark after his 3 month patch trial.  I was just reading about the brock string online and hav made one for him to try out tomorrow.  Can you give me a rough estimate of how much time you spent doing VT per day?  Lots of small sessions sprinkled throughout the day or one longer one?  I don't mind experimenting on him until his next appointment, which is rescheduled for June.  

Edited April 13, 2020 by Monica_in_Switzerland

[kbutton]

3 hours ago, Monica_in_Switzerland said:

Can you give me a rough estimate of how much time you spent doing VT per day?  Lots of small sessions sprinkled throughout the day or one longer one?

In office, we had 30 minute sessions--checking progress on tasks we did at home, introducing new tasks, and then trying to do some therapy that was enticing and fun to break through the more difficult things.

Homework was 15 minutes for usually 5 days per week. Days 1 and 2 were pulling teeth. It clicked Day 3. Days 4 and 5 were a breeze. We had about 13 weeks maybe? It was about the fastest course of VT the office had ever done because his problems were really specific vs. widespread, and we did the homework. Some kids in the same office had to do several months. They set it up in 6 week increments with a check-in with the optometrist between sessions to see how things were going and to tweak therapy based on the results.

Our office never gave more than 3-4 very short activities to do per day. If the child needed more, they had more weeks of therapy. It was tailored to each child.

The Brock string has numerous activities, most of which were altered a little at a time all through treatment and kept up or used intermittently. Out of the 3-4 activities per day, the Brock string was just one. 

There were a lot of fusion tasks and body work tasks. Some accommodation/saccades work. 

They want to balance tackling the vision problems with the more straightforward therapy tasks, and then some tasks were more for integration or what might be termed visual processing. My son didn't need a lot of visual processing work.

[My other son had VT too, but his issues were more processing and integration. He had a very serious retained Moro reflex and probably STNR and ATNR. Unfortunately, due to a connective tissue disorder, he will likely never have complete integration. VT helped a great deal with coordination, and ironically, with his ability to hear in noisy environments, lol! He did get more efficiency with visual processing too. He has incomplete visual development due to basically two lazy eyes. His eyes never turned in or out, and he probably should've had glasses much earlier (still got them pretty early). We had had a vision referral for our older son due to the automated machine at the doctor's office pinging his vision as poor in one eye. Well, it was 20/20. So, when our second showed a vision issue in one eye, but we didn't see symptoms at home, we just thought the tool was unreliable until it flagged him again. Eventually, we found out that the automated machine was picking up on our older son's strabismus, but flagging it as a acuity problem. Grr! I am not sure how much earlier intervention would've helped my second though due to the connective tissue disorder.]