Tosis???Have Your Heard of It?

Updated on January 08, 2009
T.F. asks from Indianapolis, IN
8 answers

My son is 11 mths old and has tosis. He is having surgery January 23rd. I am very nervous for I have never met or known anyone else to have this surgery. His eyes are not LAZY! They just only open 1/2 way but he can see, just kinda like looking thru blinds. Does anyone know of anyone or anything about TOSIS. Please I am so nervous. Apparently it takes 8hrs, he will be put under, they put staples in his eyebrows n pull the eyelid up...and I guess he can't sleep with his eyes closed for up to 6 mths. I need some advice. Thanks

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N.V.

answers from Fort Wayne on

T.,

My daughter was born the same way. She has what is called blepharophimosis. This is where the muscle behind the eye lids did not form. It would probably be best to consult an
opthamologist. I live in Fort Wayne and took my daughter to Dr. Plager at Riley Hospital at age 3 months. He diagnosis her within minutes. Always best to be safe and find out. The opthamologist here in Fort Wayne told me it was a case of Ptosis. Good Luck

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K.S.

answers from Cincinnati on

I have friends whose son had this, or something similar. I don't know all the details as they lived out of state at the time. I do know they had the surgery and everything went great.

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N.F.

answers from Cincinnati on

I am 36 and had that surgery when I was an infant. It is a long surgery, but I'm sure they've come a long way since I was a baby. Other than needing glasses/contacts and having some issues with dry eyes (because my eyes don't close all the way at night), I have no problems. Good luck!

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L.G.

answers from Cleveland on

Here is a link to more information on ptosis: http://www.ptosis.us/

I used to work for a group of eye doctors. Ptosis is the medical term for drooping of the upper eyelid; it may affect one or both eyes.
Ptosis is different from having Pseudoptosis which is repaired by Blepharoplasty.
There are two 'main' surgeries that may be performed on the upper eyelid.

Take a few minutes to read what's on the above website. It will be very informative to you. I hope this helps :-)

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N.S.

answers from Columbus on

My cousin's son has this in one of his eyes. At the time he was born (he is 20 now), they decided not to pursue any surgeries. He could have surgery now but says that it doesn't bother him...
If I were you, I would get a second opinion on this like the other mom suggested.

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M.P.

answers from Indianapolis on

I have not heard of babies wth it, but I worked for an ophthalmologist for years and we had patients that had that. I also have a niece who was born without muscles in her eyelids to hold them open. She has had several surgeries, the last one was to put synthetic muscle in her eyelids- she was around 7 yr old, now 11 yrs old.

All I can say is, if you are not sure about this procedure get a second opinion. If he is going to a pediatric ophth. at Midwest Eye Inst., that is probably the best place. They know what they are doing. Are you sure it is 8 hours? I can't imagine that it would take that long unless they are doing muscle grafts, or something more extensive than the stitches or staples in his eyebrows.

A child has to be able to see his world in order to learn and develop normally. You are doing the right thing by getting this fixed, but make sure you have all the information you need. Then, put it in God's hands, trust that he will take care of your baby.

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N.K.

answers from Toledo on

I can't offer any advice but I was wondering where the procedure was being done at. I had to take my now 5 month old up to the Kellog Eye Center for something else & they are wonderful! I'm not sure if that's where you are going or not but if so you are definitely in good hands. Regardless I'm sure everything will be fine, good luck!

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S.Z.

answers from Cleveland on

Hi T.!
My son has had ptosis since birth. It has nothing to do with "lazy eye" but immaturity of the upper eyelid muscle. I've gotten so sick of ppl saying "oh I see your son has a lazy eye". "NO, it's not his eye at all, but the eyelid.
I would highly recommend a second opinion. My son sees Dr. Locastro out of Akron Children's Hospital and he advised us against surgery unless it highly obstructs his vision and at the time of his last checkup, it didn't at all. He's due for another, but due to the weather, I haven't been able to get him to Akron for it.
My son's is a minor case from what I know, his is hardly noticeable when just looking at him but when he smiles really big, that eye almost closes, along with crying really hard.
I wish you good luck..but please if you feel this isn't necessary just yet or you aren't sure, get another opinion. Dr. Locastro came highly recommended by our pediatrician and ppl who also used him.
S. :-)
Justin almost 3 1/2 now

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