nystagmus surgery | Imamother

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Forum -> Children's Health

Nystagmus surgery

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amother

Tan

Wed, Nov 22 2017, 1:56 pm

Has anyone's child hadsurgery for nystagmus? Was there a big difference afterwards? Did it accomplish what it was supposed to?

amother

Babypink

Mon, Dec 21 2020, 7:51 pm

Bump!

Maybe in the years since op asked, someone here has experience?

Considering surgery for dd, would love to hear your experience.

amother

Olive

Mon, Dec 21 2020, 7:55 pm

The success rate is not high. If your surgeon admitted this and still believes it makes sense for you child, I would get a second opinion and then decide. If your surgeon claims it's usually successful I would find another surgeon altogether.

amother

Babypink

Mon, Dec 21 2020, 8:05 pm

amother [ Olive ] wrote:

I was referred to dr hertle, from Akron Ohio. He is considered a world class pediatric ophthalmologist and surgeon, who specializes in ocular albinism- my daughter's issue. Haven't made appt yet. I'm researching nystagmus surgery first.

The referring agency did tell me that the surgery has not been conclusively proven to help. I'm trying to find out whatever I can.

amother

Saddlebrown

Mon, Dec 21 2020, 8:06 pm

I know someone that her child had 2 surgeries for nystagmus and may need more. She was told that the child can lose vision on that eye. The surgery does not have a high success rate.

oneofakind

Mon, Dec 21 2020, 8:12 pm

DS has ocular albinism, mild version, nystagmus and had surgery for a severe head turn. Is that the surgery you are referring to?

amother

Olive

Mon, Dec 21 2020, 8:14 pm

amother [ Babypink ] wrote:

Correct, the success rate for nystagmus surgery is not high. Which is why I would only do it if I was using a surgeon who acknowledged that and still felt it made sense for my child.

amother

Babypink

Mon, Dec 21 2020, 8:37 pm

oneofakind wrote:

DS has ocular albinism, mild version, nystagmus and had surgery for a severe head turn. Is that the surgery you are referring to?

I'm just starting to dip my toe into the waters here.

Dd, 8, has been wearing transition glasses (prescribed by standard eye dr ) to help her with nearsightedness.

It's been 2 years since she got them, and she is struggling very much. Her eyes are strained, her head hurts every evening ... also, her nystagmus gets worse when she has to work her eyes so hard. So her eyes shake and quiver terribly by evening, and the poor kid is a mess.

I reached out to a medical referral agency, and they mentioned that dr. Hertle has had some success surgically correcting these issues.

I know nothing more than this.

I revived someone's old post here on Ima, as a first step in research.

amother

cornflower

Mon, Dec 21 2020, 8:47 pm

Maybe get an opinion from a developmental optician? In Lakewood there is Dr. Leonard Press.

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