Need some advice about strabismus/amblyopia & eye muscle surgery -- Anyone BTDT?

[becoming]

Our 3-year-old was diagnosed on Friday with intermittent strabismus & amblyopia.  Basically, his left eye deviates outward when he's tired or daydreaming.  The doctor we're seeing is supposed to be the best pediatric ophthalmologist in our state, and he is recommending surgery.  Our son isn't currently having any noticeable vision problems, and his vision in that eye is surprisingly good considering the amount of muscle weakness he has on that side.  The doctor is recommending doing surgery on both eyes at the same time to alleviate tension on a muscle at the bottom of each eye.  He would be put under general anesthesia for the surgery.  He also gave us the option of only having the left eye operated on, but it would be a slightly more invasive surgery (cutting into two muscles in that eye instead of just one) & the result is not likely to be as good as with the double eye surgery.  The doctor we're seeing seems very knowledgable & kind.  My concern is, with him not having any apparent vision problems right now, it seems scary to have his eyes operated on & take the risk of him losing his eyesight or worse.  We're going to get a second opinion before we decide anything, but I wanted to see if anyone here has been through something similar & what decision you made.  Or, what would you do if this were your child?

[Emmeline II]

My niece had her eye (actually, after reading here it was likely both) operated on when she was under 2yo for amblyopia, but she was first treated with an eye patch for awhile as that is typically the first line of treatment--the decision to operate came later--she also wore glasses. It is my understanding that this is a progressive condition so some treatment is needed prior to 5yo.

Strabismus

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001999/

Amblyopia

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002009/

Edited by Emmeline II - 4/19/11 at 4:42am

[becoming]

Yes, we're patching 2 hours a day for 6 weeks, but he wants us to schedule the surgery now.  He said patching is extremely unlikely to significantly help the problem my son has, which made me wonder what the point of the patching was.

[mybug]

I am not sure at all if this will help but my daughter also has this issue. But, when she was one, she was checked for, and has serious far sightedness. We were told at the time that she needed glasses to keep the strabismus from getting worse. It was explained to me that all kids are born far-sighted but it gets better as they get older. But, if it doesn't they will accommodate in order to be able to see. Then, their brain shuts off one eye because straining so hard becomes a problem and that is when at least one eye wanders. But, if she wears her glasses, the muscles will develop normally and the problem of wandering/crossing will stop. She has worn glasses religiously since she was one year old and he prescription is +6 in each eye. She wears coke bottles! 

So, I am just wondering if he really doesn't have vision problems? I am sure they looked and I know that there are other reasons for strabismus but I just thought I would add that story to the mix. When we take dd's glasses off, her left eye goes straight to her nose but the doctor isn't worried unless it happens with them on as well. And, we were told that if you don't correct it by the age of eight, the muscles are permanently damaged and cannot be corrected without surgery.

AS far as surgery goes, I would make very sure it is someone you trust to do a good job and that you understand the goal. Kids are so very resilient and I know I am biased because of how many times ds has had surgery and general, but when they need it, they need it and things will be just fine. But of course, eye surgery is a biggy in terms of needed the expected outcome so I would just make sure you feel right about the doctor and what he/she thinks can be done successfully.

Good luck!

[Wild Lupine]

I had significant amblyopia when I was a child and my parents opted not to have it corrected surgically. They wanted to wait until I was old enough to decide for myself.

I had the surgery done when I graduated from college and had decent enough health insurance to cover it. I SSSOOOO wish it had been done when I was a child. The surgery itself was fairly minor, much, much more minor than a tonsillectomy I had as an adult.

As a child I saw well through my dominant eye, well enough to read and function almost completely normally. But I never developed stereoscopic vision, so gym class was a nightmare and even just hanging out and having fun with friends was difficult if someone wanted to throw a ball or frisbee around. I did get a little depth perception back after surgery but not as much as if I had the surgery done as a child. I don't drive very well at night because of this.

But the biggest way I was affected didn't occur to me until after I had the surgery; before surgery when one eye wandered it was extremely hard to make eye contact with people. People often didn't even know I was talking to them because they couldn't tell I was looking at them. As an adult, being able to catch someone's eye and strike up a conversation made me realize why so many social situations had been really tough as a kid.

So I have strong feelings towards having the surgery done as early as a doctor recommends. It's a small procedure that can have a huge effect on someone's life.

[BeautyforAshes]

My daughter (2.5 yr) had severe strabismus in one eye, and had the eye muscle surgery done on both eyes.   We had an excellent surgeon, who I would trust completely.  Patching and glasses were not an option.  It is scary thinking about eye surgery, but I would agree with the pp about doing it as early as possible.  The recovery was quick--she slept for most of the first day, and was pretty much back to normal by the second day.  She had redness in the whites of her eyes, which took a while to go away, but it didn't seem to bother her.  Her alignment is great now, and she doesn't seem to have any vision problems.

[becoming]

Thanks to everyone who responded.  This is very helpful.  We are getting a second opinion on May 3, and his surgery has been scheduled for May 27 with the first doctor.  We'll get a chance to speak to him again on May 26 at the preop visit.

[askew]

We had this surgery done on my son when he was 16 months old. He actually has Nystagmus, but it is the same surgery. It went so well. It was super easy, no complications. Whole thing took maybe two hours. He recovered really well. The only thing that shocked me was how long it took for the eyes to heal. They were bright red, bloodshot, for a long time. Probably three weeks? They got progressively better, but I remember thinking if DS was in school we would have had to explain it to the other kids. It was really shocking to see the first week or so. Best of luck! 

[QueenOfTheMeadow]

My oldest son had this surgery when he was 10 months old. It was scary to turn him over to a doctor, but they let me carry him in and hold him until he was out. I sobbed the whole way back to the waiting room, but they had a nurse there specifically to walk me back and to give us updates every half hour. They were absolutely wonderful with him and with us as parents! It was a children's hospital, so they had a lot of experience. The surgery went great. He was awake and nursing within 2 hours. I agree with the fact that it was a little disturbing how red his eyes were, and the first couple of days after, if he cried it was full of blood. Buuuut, he's 12 now and graduated from his glasses 2 years ago! So it was well worth it!

[beachcomber]

I've BTDT but for myself, not my kids. I was born with both S and A  in my left eye and S in my right. The first surgery was at 18 months, on the left eye to correct the S. The second was at 4 yrs on the right to correct the S. The final was at 6 yrs to try and alleviate the A and further correct the S. Unfortunately, nothing improved the weak vision in the left eye. Patching was totally ineffective from the beginning. FYI, my optician told me that patching either works or it doesn't.

I just went back and read all the responses. This bit by Wild Lupin:

As a child I saw well through my dominant eye, well enough to read and function almost completely normally. But I never developed stereoscopic vision, so gym class was a nightmare and even just hanging out and having fun with friends was difficult if someone wanted to throw a ball or frisbee around. I did get a little depth perception back after surgery but not as much as if I had the surgery done as a child. I don't drive very well at night because of this.

It rings true for me as well. I am functionally blind in my left eye and I don't drive as a result. It's a huge inconvenience but I have poor depth perception, very poor night vision and that combined with my anxiety disorder makes it hard to trust myself behind the wheel. If I could have had this fixed (and my parents did try with 3 surgeries) I think my quality of life would be better now.

[chiefmir]

my oldest DD, now 5.5,  had this surgery (bilaterally) at 2.5 years old.  We first noticed that her eyes sometimes looked like they deviated outward when she was tired and sometimes in photographs. We saw a very well respected surgeon and he told us that her deviation was so significant that there was essentially no hope of correction with patching or chemical patching.  The surgery was actually pretty straightforward, and the only glitch was that she scratched her cornea when coming out of anesthesia, so that eye was sore for an extra day.  Other than that, we were thrilled with the outcome.  I should add that my father is an ophthalmologist and my DH is a pediatrician, so they both did a ton of research into the whole process and were 100% comfortable with DD going through the procedure.

A few things to think about-- the Dr who did DD's surgery had her come in 3 (or maybe even 4) different times prior to surgery on different days to take measurements to ensure that he was getting consistent results... in order to maximize the liklihood that his cuts would be exact in surgery.  Also a sizable minority (forgot the actual number, but is is quite a bit) of kids need a second procedure-- this is b/c the surgeon would rather err on the side of too little muscle being removed than too much.

DD has done great ever since!

[DaughterOfKali]

My son had/has double strabismus.  We tried glasses and patching but neither of them worked.  My son had surgery on both eyes.  Although it was stressful waiting for the surgery to be over, it went extremely well. (Children's Hospital Boston).

After surgery, he wouldn't open his eyes for a couple of days.  His eyes were very sensitive to the light and his vision was blurry due to the ointment.  After that, all was fine.

When he first looked at me after the surgery with both eyes focused on me, I cried.  He noticed (saw) so many details that he hadn't seen before.

Almost a year after the surgery, his eyes started turning in again.  It was mild so they gave him a new eyeglass prescription.  Unfortunately, that's not working.  I'm not sure what we'll do.

Doc wants to wait to see if it gets worse.

[becoming]

Thanks for all the responses.  I really appreciate the insight.  Last week we saw an optometrist who specializes in vision therapy, and we've decided to try the therapy for a little while before deciding about the surgery.  We want to exhaust ALL our options before putting him through the surgery, so we're going to try this & reassess in about 6 months.  He's so young that we have a little time to make up our minds.

[pimms]

Sounds like you are being very thorough and thoughtful about your decision regarding surgery.  My son who is now 8 does have strabismus in one eye, but we haven't done surgery at this point.  We patched for the first 4 years to basically maintain the eyesight/strength he does have and his vision/wandering eye is currently corrected with glasses.  We have a follow up with the Peds Opthamologist in 2 weeks to discuss surgery finally for this summer.  The PO has been ready to do surgery for a few years, we were the ones who held off.  In his case they say surgery will correct his eye.

But more than my son, I wanted to tell you that I also have minor strabismus that is corrected with glasses/contacts.  I was patched as a child and my parents were told that surgery wasn't really going to help much, so they opted not to do it.  As an adult after I had my son and we learned of his various issues, I decided to seek out a strabismus specialist in NYC where we were living at the time.  He said that since mine was corrected with glasses or contacts and I didn't really "suffer" on a daily basis, he would not recommend surgery either.  He said my parents had done a great job patching and had maintained much of my vision and surgery would maybe be able to help some, but may not be able to make enough of a difference to undergo surgery.  Make sense?  I just had a regular (different) opthamologist follow up and we revisited the the same issues and he basically had the exact same feedback.  He also praised my parents for patching me and said that my eyesight was excellent at age 36 considering the stabismus. 

My point is that there are ranges to everything and I seem to be on the "not so bad" end of the spectrum for this problem.  I can say that I am defintiely concious of the fact that my eye wanders and NEVER go wtihout glasses or contacts.  The only time I find I have an issue in social situations is if I am swimming (we do a lot of water skiing and I don't wear my contacts) and I am without correction.  I try to keep my sunglasses close by as I have found as I age that my eye gets tired really fast and Iknow when it is starting to wander. And at those time I certainly avoid eye contact.  In general,  I don't think it has kept me from social situations, I just think it is something I am aware of and the stigma around people with "crossed eyes".  HTH!

[terrican]

Hi everyone,

My son had two surgeries. One at 1 yrs.old and the second at 6 yrs.old. The second surgery went great, except that the surgeon didn't tell me his vision was affected. I did not know that he was alternating his eyes to see. He did not have binocular vision, had bad depth perception and got hit in the head with balls a lot because of bad peripheral vision. I found vision therapy and when they tested him, told me all these things. My son son thought this was the way you were suppose to see. The first vision therapy place we took him to did not help, however a college that specializes in vision therapy did help. One day he came home from school and told me he was seeing doubles, that's when I knew the vt was working. He can now use both eyes at the same time to see. He has binocular vision and peripheral vision. Thank God, he has not needed any more surgeries and is done with vt. I thank God and the Southern Ca College of Optometry for his vision today. It has been over 3 yrs. and my son is doing well. Please find a good vision therapist because it really does work!!!

[homeschoolingmama]

My son was 13 months when he had his surgery.  He couldn't look at you with both eyes at the same time.  One always went up.  He wore patches and he still has glasses that help him.  After his surgery his eyes felt like sandpaper.  It gradually got better.  If he isn't wearing glasses it will still go up.