Off-shoot of Lazy Eye Surgery

downsyndrome

Fri, Jun 11 2010, 9:31 am

Out of respect to Yo'ma and her question, I have started my own thread because my question is slightly different.
My daughter is 7 yrs. old now and her diagnosis is superior oblique palsy. I know it sounds bad and complicated, but it's basically muscle weaknesses in her eyes, which manifests itself in the following way: her eyes wander. When I talk to her she is focused on me for mere moments and then her eyes start to wander past me, behind me, above me, to the side of me, etc. It is a muscle weakness.
I went to Dr. Julie Namm in BP. She is in Dr. Steele's group. Dr. Steele doesn't take our insurance. Dr. Namm does. So, Dr. Namm gave my daughter an amazing examination, very thorough, and recommended surgery on both eyes. The incision would not touch the actual eye, just a slight incision in the 'lid' under the eye. It is a brief surgery, outpatient, and the only restriction is that the patient may not go swimming for the next 2 weeks. In addition, it is quite common that this surgery needs a follow-up surgery because the muscles have either not been tightened enough or tightened too much.
It all made sense.
When I discussed it with my pediatrician he told me to go for a second opinion to Dr. Wang. Dr. Wang is in Manhattan and is supposed to be the 'G-d' (chas vesholom) of pediatric ophthalmologists. Well, he yawned through most of the exam, wasn't 'seeing' the extent of muscle weakness as I described it to him, and told us to do eye exercises on a daily basis and come back to him in three months.
Anybody have anything to say to this? Has anybody avoided surgery by doing eye exercises or are we just wasting our time?
Thank you.

mamommommy

Fri, Jun 11 2010, 9:41 am

I know that my doctor had told me that it's possible to avoid the surgery with patching, exersizes etc.. which is why we did it for 2 1/2 years until it became clear that it wasn't going to get better, it was just getting worse. The surgery really wasn't that big of a deal, but I don't see how it can be harmful to wait, especially since he's following up in just 3 months. Doctors are very different about these things. Some just jump straight to surgery, and others will want to try everything else possible and go to surgery as a last resort. It's a personal decision and I don't think that either doctor is steering you wrong.

erika

Fri, Jun 11 2010, 9:56 am

my daughter had lazy eye surgery just before her 2 year old birthday, I went to Dr. Lustig ( who is also part of the Dr. Steele group) and we tried the patch for a while but it didnt help. he said the earlier you do surgery, the better it is...I actually went to Dr. wang for a second opinion cuz I heard he is the TOP. He said I will most likely need the surgery but he was very blase about it so I opted to go with Dr. LUstig. I think the steele group is amazing and I would recommend going with them. I don't see a reason to wait, the sooner the better! good luck!

amother

Fri, Jun 11 2010, 10:23 am

My 10 year old sister had surgery by Dr. Wang. She was diagnosed By Dr. Muchnik in NYC with lazy muscle & her eyes kept on wondering in different directions. He wanted to do surgery. My mother went to Dr. Wang for second opinion. I remember her coming home & saying shes a bit unsure about him. He has a weird personality. She asked some people for reassurance & everyone said hes the best. She had surgery by him. After surgery, she was supposed to make exercise every day. Otherwise her eyes started wandering off again. NOw, 14 years later, when shes pregnant, postpartum, or extremely tired, it can still happen. But its definately better than before surgery. Good luck with your decision.

amother

Sun, Jun 13 2010, 3:44 am

I had lazy eye surgery done to me (At age 12) by Dr. Wang. It was first diagnosed by another dr. (I don't think he's in practice anymore) and we went to Wang for a 2nd opinion, and he agreed that it was the right thing to do.
I don't remember him having a wierd personality. I thought he was very nice. After the surgery, he was the one I used as my opthalmolagist.

A few years later, my eye started wandering again, and we were considering getting surgery again, but for some reason it never happened and over time, it got a lot better. Now people don't seem to notice my eye wandering, although I feel it sometimes.

amother

Sun, Jun 13 2010, 3:56 am

chocolate moose wrote:

But 7 years old is an older girl. Patching and exercises are only shayach up to a certain age.

This used to be true. When my dd started treatment 13 years ago the doctors said if you didn't start patching by aged 7, nothing could be done later. And he told us to keep coming to him till aged 10, I think.

During those years they have learned new techniques and can now even help some adults.

the world's best mom

Sun, Jun 13 2010, 8:23 am

This is so funny! I have jjst scheduled an appointment for my son with Dr. Lustig (from Steele's group). I am not taking him back to Dr. Campolattarro (from Dr. Wang's group) because I wasn't happy with my experoriences with him. We always have to wait for hours, and last time I was there with ds who only wanted to run out the open door and into the elevators, and dd who has clubfeet and only wanted to sit and play with me. I tried keeping ds in the waiting room, he cried, so they made us leave the waiting room.

When they finally called us in 3 hours later, ds had taken many elevator trips and was desparate for a nap. Dr. Campolattaro looked in his eyes for a whole 2 seconds before saying he was fine. He looked in dd's eyes for about 60 seconds and said she needs extremely strong glasses. She can't see with her glasses on.

We have used Dr. Lustig before, but I switched to Campolattaro because I felt Lustig wasn't finding ds's problems. I'm quite happy to switch back now.

amother

Sun, Jun 13 2010, 11:43 am

I'm the amother who wrote that my 10 year old sister had surgery with Dr. Wang. I went over to my mom yesterday & we were discussing it, since my son has a lazy eye too. She said that she went to Dr. Wang, but did NOT do surgery with him. She hated his personality sooooo much. He was screaming when the child didn't cooperate fully. He was also screaming at my mom. After the visit, my mom called MRI & told him about Dr. Muchnick & Dr. Wang. He said to rather go with Dr. Muchnick.

the world's best mom

Sun, Jun 13 2010, 12:22 pm

amother wrote:

Can someone please explain what you see when a child has a lazy eye? My pediatrician said my 16 month old has a lazy eye & I'm going to an eye doctor tomorrow. Is this the same as cross eyes?

No, it's not the same thing. You might see one eye drifting out, but you also may see nothing at all. I had a lazy eye that hardly ever drifted. Ds's was drifting out all the time. Lazy eye just means that one eye is weaker, so it stops working together with the good eye since it feels useless anyway. That may or may not cause it to drift.

yo'ma

Sun, Jun 13 2010, 12:48 pm

amother wrote:

But isn't drifting a lazy muscle? My sister's problem is a lazy muscle & she has drifting eyes. Also, is there no other solution to lazy eye? Do all kids with lazy eye end up having surgery, sooner or later?

No, for some people treating it with a patch fixes the problem.

amother

Sun, Jun 13 2010, 1:20 pm

First on the topic of Dr.s Wang and Campylattaro (my son is 21 months old and needed surgery for nystagmus). I'm not sure what is up with Dr. Wang. I have heard wonderful things about him, but when I went in he didn't want to hear what I had to say until he examined my son and dilated his eyes and examined him again. If you ask any doctor - 90% of the diagnosis is in the HISTORY NOT the EXAM! I was really uncomfortable with him and how he answered my questions etc.
I went to see Dr. Campylattaro next and he actually listened to the problem. He had a waiting room full of people so I was trying to hurry, but when I said something he immediately sounded apologetic and asked if I felt like he was rushing me. He was NOT. He does not take as long examining him as I would like, and I would have liked to put him in glasses already but Dr. C was not ready to do that at such a young age.

Second - on the topic of lazy eye. A lazy eye usually occurs when the vision in one eye is stronger than the other. The brain eventually starts 'ignoring' the weaker eye, so the muscles of the eye end up relaxing more and allowing the eye to wander (usually outwardly). Patching sometimes helps if it can make both eyes equal, but sometimes surgery does need to be done.

Just to end -- m son DID have surgery with Dr. Campylattaro, and B"H his vision improved a lot because of it.

amother

Mon, Jun 14 2010, 3:24 am

amother wrote:

Lazy eye can have several causes - cross eyes, a drooping lid, bad vision in one eye etc, anything that means the two eyes don't see well together. The brain stops using the weak eye.

To treat it you have to treat BOTH things - the cause of the lazy eye (which might mean surgery for weak muscles, or glasses) and the lazy eye itself. If you only treat the cause the eye will remain 'lazy' if it was already like that, and if you only treat the lazy eye, it will just come back if you haven't cured the cause. The patching only treats the lazy eye, not the cause. Some causes need surgery and others don't.

amother

Mon, Jun 14 2010, 3:35 am

my son has lazy eye but we caught it to late
we only found out about it on his 7 year old standard check up and his lazy eye is so bad that he already doesn't use the eye.
we tried a number of things - went to different dr's but in the end were basically left with the fact that he sees only from 1 eye. if you cover his right eye he can't see how many fingers you hold up it's that bad -- all he sees is some lights.

mommyof2bah

Mon, Jun 21 2010, 6:09 pm

My daughter had eye muscle surgery on both eyes earier this month. One of her eyes was MUCH weaker than the other. Her eyes look MUCH better B'H, but for the past day or two I've seen that the weaker eye has started to wander a little bit and perhaps not be as focussed or aligned. I think that she is tired and that it could be attributed to that, but did anyone notice that the eye might have jumped around a bit after? we went for a checkup 10 days after and he said that the muscles were trying to work themselves out and looked much better and then we scheduled another f/u for July. Anyone notice this? THANKS

mamommommy

Mon, Jun 21 2010, 10:08 pm

mommyof2bah wrote:

We were told that they don't gauge anything until 6 weeks post-surgery because the muscle is still adjusting. I wouldn't worry about it until your next visit.