Help: DD8 needs surgery?

[taximomfor4]

I'm going to ramble, I think. DD8 has a collection of special needs (all invisible). One is a blind spot in her left eye. Well, her pediatric opthalmologist just completely shocked us yesterday, saying that she needs surgery on that eye to loosen 3 muscles. I am so afraid. Our old pediatric opthalmologist never mentioned any strabismus, but lately, when the new dr holds an item up and laterally (where she doesn't see with her Left eye), her eye just jumps a completely different direction. He told us that it is time to fix the muscles. I don't really know about eyes, and am not sure that fixing muscles is going to change the outcome. She will still have a blind spot up and laterally...but what do I know?

I know enough about eyes to know we are at the tail end of the cutoff for fixing strabismus -- it can become permanent after age 8. So he scheduled the surgery for 1/4. I am soooo not ready. I want to try to get a second opinion, but our former ped. opthalm.schedules a good 8-9 months out. I know there is one other ped opthalm that has been highly recommended to me, but there is probably nil chance he can squeeze dd in so quickly.

What do I do? And how do I prepare her for this surgery? She has sensory integration dysfunction, so lots of things bug her waaaaaay more than the typical kid. HELP!

Beth

 

[Tazicket]

Unfortunately, I don't really have any advice for you (I've never been in that kind of situation before). I can offer you a though. Try to get in to see the other doctor. You never know for sure unless you try. And if he can't see you, then you're no worse off than you are right now.

 

[taximomfor4]

Ok, I began calling today. Doesn't look like we can get into either other specialist. I just don't know what to do. I hate to have my child go under general anesthesia for ANY surgery, and I just don't know if this one is even necessary. I am kicking myself for letting dh take dd to her appt yesterday. He had to ask questions, etc, and doesn't necessarily remember all the things I want to know, lol.

Beth

 

[Tinijocaro]

Have you tried joining a yahoo group on this subject or one on general eye disorders. You may meet lots of people who have dealt with this and get some good information. Go to yahoogoups.com, register, and try your dd's disorder in teh search box. If that doesn't turn anything up, try other eye related searches. try to join a group that has a lot of members.

 

[Tazicket]

Can you call back the first doctor to find out what all you want to know? It seems like they should be willing to answer all of your questions when looking at a surgery like this. Any kind of surgery is scary, but maybe finding out more will help to put your mind at ease. Are there any other doctors near you who could maybe see your DD?

 

[Tazicket]

Have you tried joining a yahoo group on this subject or one on general eye disorders. You may meet lots of people who have dealt with this and get some good information. Go to yahoogoups.com, register, and try your dd's disorder in teh search box. If that doesn't turn anything up, try other eye related searches. try to join a group that has a lot of members.

Good idea! I did that before my knee surgery last year and learned lots of great info!

 

[Tinijocaro]

I just checked yahoogroups and typed in strabismus and a bunch of groups came up. The first one deals with children who have lazy eye and/or other disorders. I would join a few groups and post to each one your concerns. Ask about options or what other parents have done. Here is the list of groups on the subject of strabismus.

http://groups.yahoo.com/search?query=strabismus

 

[tink1978]

I'm going to ramble, I think. DD8 has a collection of special needs (all invisible). One is a blind spot in her left eye. Well, her pediatric opthalmologist just completely shocked us yesterday, saying that she needs surgery on that eye to loosen 3 muscles. I am so afraid. Our old pediatric opthalmologist never mentioned any strabismus, but lately, when the new dr holds an item up and laterally (where she doesn't see with her Left eye), her eye just jumps a completely different direction. He told us that it is time to fix the muscles. I don't really know about eyes, and am not sure that fixing muscles is going to change the outcome. She will still have a blind spot up and laterally...but what do I know?

I know enough about eyes to know we are at the tail end of the cutoff for fixing strabismus -- it can become permanent after age 8. So he scheduled the surgery for 1/4. I am soooo not ready. I want to try to get a second opinion, but our former ped. opthalm.schedules a good 8-9 months out. I know there is one other ped opthalm that has been highly recommended to me, but there is probably nil chance he can squeeze dd in so quickly.

What do I do? And how do I prepare her for this surgery? She has sensory integration dysfunction, so lots of things bug her waaaaaay more than the typical kid. HELP!

Beth

I thought strabismus was where the muscles were too loose already...not too tight....anyway, I had a client who was 17 when she had strabismus surgery and it fixed her eye. If the doctor feels confident, I would try it. Just talk to her about the procedure and tell her what it involves so that she is prepared....I don't know anything about sensory integration dysfunction...I will have to look into that.

 

[jennyl772003]

My son is legally blind and has nystagmus and lazy eye. Our ophtamalogist told us to get the surgery if he started getting commented on it by his peers. Since it doesn't fix any vision, it's purely for cosmetic reasons. He is 9, and will not be having it fixed.

 

[miss missy]

Is there an Eye and Ear specialty Hospital around you that you can go to?? If not, I would go far and wide to get a second opinion just to ease your nerves.

 

[taximomfor4]

yahoogroups was a great idea. I found one with lots of members for Coloboma. Since not many people know much about it, and hers is through all the major eye structures (which DOES cause vision field defect), it would be great to have someone to chat with about it!

meanwhile, dh is on his break at work. He says he was up all night long worrying about this. So now he is calling the TWO other opthalmology specialists we found that do children's eyes.

Beth

 

[Tinijocaro]

Believe it or not, a little girl in my dd's class has coloboma. I had never heard of it beofre.

 

[taximomfor4]

Is there an Eye and Ear specialty Hospital around you that you can go to?? If not, I would go far and wide to get a second opinion just to ease your nerves.

The eye specialty place around here is the Cole Eye Institute at the Cleveland Clinic. That is where dd USED to go, but appointment scheduling was a good 9 months out. When her dr had to cancel and reschedule us once, the reschedulel was almost 10 months away. I wasn't happy.

UPDATE: DH called the other specialists. They work out of Cleveland Clinic as well, and cannot get us in for about a year. SO I am apparently stuck with what the current doc says,I guess.

I hate this.
Beth

 

[rascalmom]

I had surgery for lazy eye when I was 4. This was in 196...., well - a LONG time ago. I remember having to wear a patch on my eye afterwards.

Obviously, surgical techniques will have improved greatly since then. But even though I had mine back in the "dark ages" - everything went well & was successful.

I would definitely not hesitate about calling the surgeon's office to get your questions answered. It will help you prepare & that will allow you to better prepare your child.

I wish her good health & a speedy recovery.

 

[anewvance]

My daughter had this surgery last year when she was 4. It's really a very simple surgery that takes less then a half hour and we were able to take her home and hour later. There wasn't even a patch or anything on the eye afterward, it was just a little red and you put drops in it a few times a day for a few days. It was really easy as pie.

I wish your daughter luck, keep us updated!

 

[tiff211]

dd15 had eye surgery at 2 months, 4 years and 14 years old. She was born with a congenital cataract and had her lens removed. Her last surgery was for a lens implant and to fix her lazy eye. The lens hasn't really given her any more sight, she is still legally blind in the eye but I think we would have always wondered what it if I let my fears prevent me from TRYING everything recommended to restore her vision. Her lazy eye has been corrected and I have noticed her self-esteem ihas jumped ( a little too high at times ).

The surgery and recovery went without incident. I have an eye aversion, so I had to be strong but the first time I looked at her blood shot eye, I just about passed out! DH was great in helping put her drops in. She was in pain for about 3 days and we gave her lots of pain meds but after that she was ok.

Oh, I know the lazy eye was a result of her being blind in the eye and not being used so she had the corrective surgery twice.

As for the preparation, of course it was easier because she was older this time but I think just being totally honest about what to expect, maybe let her sit and listen as you ask the opth. questions and also encourage her to ask her own and share any fears so they can if at all possible be squelched.

I know deciding what to do is so hard. I remember trying to decide what to do when I was given DD's diagnosis when she was 3 days old. I was a 20 year mother, and I was told I could just leave the lens in her eye or have it removed and have to deal with patching and her wearing a contact lens until she was grown enough to get the implant. And there would be no guarantees that she would be able to have sight. Hang in there and get as much info as possible to make your choice. You could always schedule the surgery and then cancel if you decide against it. How does your DD feel about it?

 

[taximomfor4]

dd15 had eye surgery at 2 months, 4 years and 14 years old. She was born with a congenital cataract and had her lens removed. Her last surgery was for a lens implant and to fix her lazy eye. The lens hasn't really given her any more sight, she is still legally blind in the eye but I think we would have always wondered what it if I let my fears prevent me from TRYING everything recommended to restore her vision. Her lazy eye has been corrected and I have noticed her self-esteem ihas jumped ( a little too high at times ).

The surgery and recovery went without incident. I have an eye aversion, so I had to be strong but the first time I looked at her blood shot eye, I just about passed out! DH was great in helping put her drops in. She was in pain for about 3 days and we gave her lots of pain meds but after that she was ok.

Oh, I know the lazy eye was a result of her being blind in the eye and not being used so she had the corrective surgery twice.

As for the preparation, of course it was easier because she was older this time but I think just being totally honest about what to expect, maybe let her sit and listen as you ask the opth. questions and also encourage her to ask her own and share any fears so they can if at all possible be squelched.

I know deciding what to do is so hard. I remember trying to decide what to do when I was given DD's diagnosis when she was 3 days old. I was a 20 year mother, and I was told I could just leave the lens in her eye or have it removed and have to deal with patching and her wearing a contact lens until she was grown enough to get the implant. And there would be no guarantees that she would be able to have sight. Hang in there and get as much info as possible to make your choice. You could always schedule the surgery and then cancel if you decide against it. How does your DD feel about it?

So if your dd has sight loss in that eye, won't the strabismus just come back again? The brain is still going to shut out that eye's vision. I don't mind dd getting the surgery so much, if it will truly help her. I just don't know about whether it will or not. I am going to have to call the opthalmologist and ask my questions. I don't like him too much as a person, but have so far trusted him as a dr. Worse part is, dd4 also has strabismus (but hers is not from a coloboma). I don't want to do this once, let alone twice, lol.

As for how dd8 feels about this, I don't think she has a clue what it entails. DH asked the dr yesterday how to explain it to her, and the dr looked shocked, and said that's a great question, that nobody had ever asked him that before. I am hoping some inspiration comes to me! I was hoping there were kid-friendly pamphlets or something, like for the dentist.

Beth

 

[justhat]

My neice has a coloboma and microphthalmia and has had several eye surgeries. Her case was worse in that she was completely blind in that eye, and since it was smaller than the other eye (the microphthamia) it was very noticable. She started to get granulomas when she was 2yo so they had to remove the eye and replace it with a prosthestic right before she turned 3. If you want, I can send you my SIL's email address if you want to ask her about the surgeries her daughter had if that will help you at all.

 

[KirstenB]

Can you tactfully ask this dr to recommend someone to give a 2nd opinion? It sounds like it's really hard to get an appt quickly, but maybe this dr can get your dd a quick appt in with another dr. I'm sure he would ask for a 2nd opinion if it were his daughter, so I don't think this request is unreasonable.

 

[tiff211]

So if your dd has sight loss in that eye, won't the strabismus just come back again? The brain is still going to shut out that eye's vision. I don't mind dd getting the surgery so much, if it will truly help her. I just don't know about whether it will or not. I am going to have to call the opthalmologist and ask my questions. I don't like him too much as a person, but have so far trusted him as a dr. Worse part is, dd4 also has strabismus (but hers is not from a coloboma). I don't want to do this once, let alone twice, lol.

As for how dd8 feels about this, I don't think she has a clue what it entails. DH asked the dr yesterday how to explain it to her, and the dr looked shocked, and said that's a great question, that nobody had ever asked him that before. I am hoping some inspiration comes to me! I was hoping there were kid-friendly pamphlets or something, like for the dentist.

Beth

The strabismus came back after she had the surgery at 4 to correct it, it started to come back around age 9. More noticable in pictures and it gave her such a complex and complained about getting teased. We opted to wait until she was old enough to put the implant in so it would just be one surgery. It's been a year and a half and it still looks great. Her dr. said there was a chance that it would come back but not for years. By that time, she will decide if she would like to have it done again.