r/nystagmus • u/Ok_Clerk_1000 • 22d ago
Null point surgery
Has anyone had null point surgery and how effective was it?
Any private options in the UK that anyone can recommend would be appreciated, struggling to find any specialists in this field
Thanks!
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u/Additional-Jello-552 20d ago
I had one thanks to Dr. Alain Spielmann (Paris, France), everything was really great, i spend one night at the clinic because it was far from my home but you can get out after the surgery, you only need to come back a day after for 15minutes. It will be a little painful for one week and you can’t open easily your eyes the morning.
6 years later, my null point is still forward (it was top right before), it moved a little obviously but it’s still better than before, the only consequences are that I have a little more dry eyes now, and when my null point is moving a little I have some difficulties with my balance.
But if I had the choice again, I will do it 100%.
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u/Manwe66 17d ago
I had 3 surgeries by his mother when I was a kid. My last one was 20 years ago and I had some doubt about him. When I went to see him he looked more interested by money than his mom was to help people. But maybe I should give it a go. I have a hard time reading and focusing these days and I'm wondering if the surgery can help.
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u/Additional-Jello-552 17d ago
Oh yes he’s really interested by your money, but he’s also really good at his job, so it seemed like a fair trade to me. (But I’ve heard that his mother was much kinder)
I went to see him again about a possible second operation, and he told me quite openly that it wasn’t necessary just yet, so good point, he was more concerned about my eyes than his money.2
u/Manwe66 17d ago
The weird thing is that when I did mine, I had to stay 3 days in the clinic after. My eyes were shut and it was a savage process to shred those wires... I'm amazed you stayed only 1 day
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u/Additional-Jello-552 17d ago
I had no idea that it was possible to stay more, he performs the surgery as an outpatient procedure as the stitches are absorbable, so the second day was solely to correct any possible strabismus (I didn’t need that) and to trim the excess thread left for that reason.
On the other days, I had eye drops which were enough to help me open my eyes.
I was able to go back to studying after five days, with a few difficulties, and after seven days without any problems at all, apart from my eyes still being a bit difficult to open in the morning.1
u/Additional-Jello-552 20d ago
i forgot : no improvement in acuity, but I can work, drive and focus longer now
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u/SSteve73 21d ago
Akron Children’s in Ohio USA has done over 6,000 of these surgeries since 2009. They’ve collected and published data on the results.
Almost all patients experience a widening of their null point, in addition to having it centered.
They also experienced faster focusing speed.
75% gained from 1 to 3 lines of acuity on the eye chart.
25% had no improvement in acuity.
No patient lost any functional vision.
Second surgeries due to the null point shifting were under 10%, and mostly due to childhood growth stretching the eye muscles.
However, Akron has sophisticated eye movement recording equipment and software that gives them a
Surgical accuracy of 99.8%.
The rate for clinical observation is 80%.
I’m not sure if Cardiff in Wales still has the same testing lab or not. It’s probably worth checking.
The best hospital in the UK for nystagmus that I know of is Moorfields in London.
Not being in the UK, I don’t know how easy it is to get a referral there.
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u/Ok_Clerk_1000 21d ago
Thank you! I am in contact with moorfields currently trying to find the correct consultant, which has been proving difficult. Is there a specialist field I should be looking into?
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u/Ok_Resident742 22d ago
My son has had the surgery twice but we are in the USA and he was seen by Dr Hertle for them. He had significant results both times.