Surgery [tenotomy]

[clare]

Hi Everyone,
My son is due to have surgery to move his null point forwards in 2011 when he is 4 1/2. After reading some of the other posts about this topic, how many of you have had the operation and have the results been successful and lasted?
Thank you
Clare

[Mike H]

Clare,

I'm surprised there have been no replies to this. Where and when is he having it? This is the one op I would consider but I know so little about it and would like to know more. Information on this, especially in the UK, seems incredibly patchy. Can anyone help?

Mike

[clare]

Hi Mike,
He is having the operation in Miami,Florida at a hospital called Balscom Palmer with a Dr McKeown.We hope to have it done in the summer next year before he starts Kindergarten. We have been seeing him every 6 months since Ned was 6 months old. Ned has an established null point which came almost exactly when he was officially diagnosed at 6 months. We are very fortunate that his Nystagmus has really stabilized and he seems to have really good vision and is developing normally without any other problems. However the head turn is obvious and there is some sign of tightening in his neck muscles so the surgery is something we feel will really help him. From what I can gather the surgery is very common with Nystagmus patients in the States and there is a minimal risk.
Thanks for bringing the topic up again, maybe there will be some response this time!
Clare

[James]

This is the one op I would consider but I know so little about it and would like to know more. Information on this, especially in the UK, seems incredibly patchy. Can anyone help?

I'll see what I can come up with Mike. I'm sure one or two people on the forum have had the operation done.

I've met Dr. Hertle and Lou Dell'Osso and they both suggested I had the operation, but they didn't manage to sell it to me. I will try and gather my knowledge (factual) about it and make a post in the coming week - if I don't remind me!

In the meantime, if anyone has any experiences of the operation, please do post!!!

[Mike H]

Thanks James. I will remind you!

[clare]

Hi James,
Do you have a null point?
Clare

[James]

Hi Clare,
I do indeed have a null point and it has been described by a couple of medical professionals as 'extreme'. It is basically found when I move my eyes to the top right, so when trying to focus on something, I often tilt my head/chin downwards and turn my head to the left.
Best wishes,
James

[clare]

Hi James,
It sounds as if you have an almost identical head position as my son which has been described as a 'significant head turn/tilt'.
Has it caused you any neck problems? Also, have you always had the same position or has it changed at all as you grew up?
Thanks for your time.
Clare

[Larry]

Hmm . . . does anyone else not have a null point or am I the only one? Incidentally, as far as I know, the tenotomy is when all four eye muscles are cut and then sutured back in exactly the same place. This operation somehow helps to slow the eye movement although it is not certain why this works and it is suggested that it’s simply a matter of somehow tricking the brain.

There is also a similar operation on the eye muscles to straighten a squint and another to relocate the null point. It makes sense to do the tenotomy when either or both of these operations are called for. However, I don’t think that the tenotomy is widely accepted in the UK yet. Leicester University hospital are carrying out trials on the tenotomy operation, aimed at people with a squint or useful null point, I think, so they can actually do two or three of these procedures at the same time.

[James]

Clare - my null point / head tilt has not caused me any neck problems yet (touch wood) and it hasn't really changed as I've grown up, or at least, I don't think it has.

I will email someone right now to try and get some of the facts, maybe I can even convince them to reply to the topic!

[Mike H]

Larry,

What's a "useful null point"?

Mike

[Larry]

Ha, ha, from my point of view Mike, one that stops or slows the eye movement enough to make it worth having the surgery to centralise it.

[Mike H]

Thanks Larry. Mine is about ten degrees to the right of horizontal, so not quite as spectacular as James, but having been brought up with the idea that nystagmus was something that had no treatment I am becoming fascinated by the range of stuff currently happening and have been wondering especially about tenoromy.

I wonder if I'm useful enough

Mike

[clare]

Hi Larry,
My son's null point enables his eyes to be completely still so I would agree that it is a useful one! His turn is about 30 degrees to the right with a slight tilt upwards. I thought that all null points made the eyes still but I suppose it may just be the point for the best vision.
James, It is good to hear that your neck has not been affected , that is the main concern of ours at the moment although Ned holds his head straight most of the time and just uses his null point to look in the distance, at something unfamiliar or for the tv.
I would be really interested to hear some expert opinion as well as personal experiences.
Thanks
Clare

[Larry]

Hi Clare, hmm, what’s in a word a? On reflection, I could have worded my comments better and yes, of course, thinking about it, ‘null’ means zero, nothing, etc, so a null point in nystagmus would imply no movement but I have read research articles where they refer to the null point as the point where vision is at its best and the eye movement is minimal.

It would be interesting to hear from others as to whether or not they have a null point or an eye position where there is less movement. Mine is sort of in reverse, I have the same amount of movement throughout except if I look to the far right, where it’s slightly more difficult to control.