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My 4 1/2 year old daughter is scheduled to have surgery to correct her null point in November. For the last 3 years she always turned her head to the right and looked to the left to focus on things. I've recently noticed that she is now turning her head to the left and looking out the right. Not sure what this means for the surgery if she doesn't have a "consistent null point" all of a sudden. I don't want to make her vision worse with this surgery if the wrong muscles are tightened/loosened. Her doctor is EXTREMELY hard to get in to see, so if anyone knows anything about this it would be so greatly appreciated.
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- Joined: Mon Sep 12, 2011 6:20 pm
Thanks for the question about null point surgery. I've spoken to one of the Nystagmus Network advisers about surgery and the possibility of a moving null point. They made the following two points:
1) A surgeon should always do more than one set of measurements (at different times) to ascertain where the null point is.
2) People with nystagmus who wear glasses often have a different null point when they take their glasses off. This is probably because the glasses frame may get in the way of the null point.
Hope this helps.
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My son, who is now 7, had this surgery when he was 4. It was great at first, you could see almost no head turn and the nystagmus has decreased substantially. However now the head turn is returning but still not to the degree that it was previously.
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- Joined: Sat Nov 12, 2011 3:01 pm
We had null point correction surgery in the US in Mobile AL almost a year ago for our 6 year old son with horizontal nystagmus. I don't want to scare anyone who is contemplating the procedure as there are many instances of wild success.
The surgery resulted in a major overcorrection, making his null point on the other side, but much further and worse.
It is beginning to look like a second surgery will be needed. My wife is not on board with this, because of the thought of putting him through that again.
My question is...Should we go to the same doctor for the procedure? I am tempted to go to Vanderbilt and use the Doctor whom heconsulted with on the procedure.
We are at a loss and really dont know what to do! Thanks for your advice.
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- Joined: Mon Feb 06, 2012 2:20 am
You say that tenotomy is a new operation for nystagmus. Can you give an indication as to how long it has been available in the UK?
Reason for asking; if its different to the failed surgery I had 9 years ago to try to move the null point, Id be interested in making some enquires into it.
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- Joined: Sun Apr 08, 2012 12:24 pm
- Location: United Kingdom
My son is now 14 and has been going to Moorfields in London from 6 months. For a very long time they told me that there was no one there skilled enough to carry out the operation. I went six months ago and there is a new consultant and she said they would use Botox initially to guage how successful the operation could be as its reversible. Either way, I haven't met anyone at Moorfields from all my visits who has had this operation so its can't be very common. I would not be confident letting my son have this procedure at the moment.
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- Joined: Fri Sep 21, 2012 3:16 pm
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