Have you got your ticket?

The Nystagmus Network's annual Open Day is the biggest UK nystagmus event of the year. Our volunteer Education Advocate, Frances Lilley, will be there to answer all your questions on education support.

Nystagmus is the most common form of vision impairment in school aged children in the UK. At least 1 in 1,000 babies are born with the condition each year. That's a lot of children needing specialist support to access their learning. Frances is here to make sure families receive that support.

Meet her at Open Day 2018!

 

Glen joins the Team Nystagmus Network abseil!

The Nystagmus Network is partnering with Moorfields Eye Charity to offer you the opportunity of a lifetime, to abseil down the ArcelorMittal Orbit at the Queen Elizabeth Olympic Park, London to raise money for nystagmus research at Moorfields Eye Hospital and University College London.

Do you have what it takes to raise money for pioneering nystagmus research?

Glen does! And so do his 10 team mates. Do you want to join them?

 

Do you flush your contact lenses?

With so much talk at the moment about plastic pollution, here’s one small way in which the vision impaired community can help. We can stop flushing our used contact lenses down the loo!

In a BBC article this week, Environment Correspondent, Matt McGrath, explained how discarded disposable contact lenses can end up as plastic waste in the ocean. So the next time you remove your lenses, please put them in the bin.

 

VI skiing over the Bank Holiday?

We’re delighted to confirm another opportunity to ski with the Nystagmus Network and the Outspan Rebels VI ski team.

On Sunday 26 August we will be running a 2-hour ski lesson for £20 per person at Snozone, Milton Keynes.

From 2:30pm to 4:30pm we will have a beginners’ session on the starter slope and intermediates’ on the main slope.

Beginners – group lesson with Snozone qualified adaptive coaches.

Intermediates – hints and tips at the top of the main slope with Ski Guide, Jamie Fuller and Alpine Race Coach, Glen Greener.

Sorry, no sledging this time.

Visually impaired adults and children (over 4 years) with fully sighted friends/family members welcome.

 

Tickets on sale!

The last remaining tickets for this year's Open Day won't hang around for long, so, if you want to join us in Birmingham, book your place today!

Member booking is now closed, but if you're a member and you haven't yet booked your free place, please email us at info@nystagmusnet.org.

Open Day ticket holders will receive full details of the agenda, speakers and all activities planned.

 

Still to come in this issue - Harry's surgery

As a charity, whose staff and trustees are not medically trained, we cannot endorse, or otherwise, any particular treatment. This summer Harry has undergone surgery to address the head turn associated with his null point. His Dad, Ian, has asked us to share their story. We're grateful to the family for sharing their experience and wish Harry a full recovery.

Null point surgery

Known commonly as ‘null point surgery’, the Anderson Kestenbaum procedure seeks to move the null point to a more natural, central position rather than off to the side. Practitioners do not claim that surgery can cure nystagmus, simply that it can enable the patient to look straight ahead afterwards, where their vision is the clearest.
 
This may be one of the biggest decisions for a parent on behalf of a child and can be made only in careful consultation with the ophthalmologist and surgical team, as Harry's family did.
 
The procedure involves detachment and reattachment of the eye muscles. As with any surgery, there are risks involved. 
 
15 year old Harry has undergone the Anderson Kestenbaum procedure this summer. He and his family have asked the Nystagmus Network to share their experience. 

Harry's Dad, Ian, writes:

“My son, Harry, is 15 and was born with idiopathic nystagmus. Harry has relatively good vision and a null point He has a 40 degree head turn.
 
“My wife and I made a decision when Harry was young that we would not consider surgery unless he wanted to when he was of an age that he could sensibly make that decision.
 
“As Harry grew up he tried wearing glasses with prisms to help straighten his head posture, but a combination of constantly losing them and being conscious about wearing them meant this wasn’t a success.
 
“Harry went to the Opticians about a year ago on his own and during his check up the topic of head posture came up. The optician made a referral to Ophthalmology. Over the next 12 months we had multiple meetings with the senior ophthalmologist and after many discussions and questions we agreed to pursue the Anderson Kestenbaum procedure.”

Here are just some of the questions the family had, with answers from the surgical team:

• Is this a complicated procedure?

Yes. Operating on eyes in general is complicated. When 2 eyes are to be operated on at the same time it's complex. 

• How long does the surgery take?

From going down to the anaesthetist to returning from recovery takes about 2.5 hours (1.5 and 2 hours for the actual surgery). 

• What are the risks involved? 

The null point may not be picked up again by the brain in its new position, meaning we lose the one thing Harry has to control his nystagmus. Double vision can result if the eye realignment is not exact. Damage can occur to vision during the operation. Plus there are all the usual risks associated with surgery. In addition the consultant was keen to point out that there is a chance that we go through the surgery and, over time, Harry’s eyes move back to their original position. 

• What is the recovery timescale?

Everyone is different, but expect soreness for the first couple of weeks, which will ease over time. Final results of head posture will be known after around 2 months when all the swelling has settled and the brain has worked out its best position to see.
 
These are just some of the main questions the family had. 

Ian recalls the day of the operation:
 

“We had to be there at 8am and Harry was in really good spirits. He went down to the operating theatre about 10.45am. Then it was the waiting game for my wife and me. He was wheeled in to the room from recovery around 2pm, much to our relief. He was very groggy still and couldn’t open his eyes, but we were hugely relieved to hear that he had opened them and had been able to see the anaesthetist standing over him. That was my first fear as a parent overcome. Could he see? Tick. Yes, he could.
 
“Harry felt sick after the operation. Apparently that’s common for people who’ve had surgery on their eyes. He was sick around 4pm and also felt dizzy. At this stage they were considering keeping him in overnight. Harry hadn’t opened his eyes yet, as they were really sore. The consultant who operated on him came to the room and got Harry to sit up on the bed and look at me holding some large letters about 4-5 metres away. Harry could open his eyes only for a few seconds before they hurt too much, but, again, to our relief, he was able to read what was in my hand, although it was a bit blurry. Even more pleasing was his head posture. Immediately it was noticeable that he was looking straight at me. No head turn. Another tick in the box and another of our fears overcome. After this he seemed to come round and we got him home that night.
 
“His eyes were so sore to look at. He has been super brave, but we know they have been really painful for the first 2-3 days in particular. He has been able to open his eyes only for a second or two. The rest of the time he’s been lying with his eyes shut, as this is more comfortable. His eyes did look very sore. Not a sight for the squeamish.”

A few days after the operation it was time for father and son to have a chat about how things had gone. Ian continues:

 
“On the Sunday post operation Harry mentioned some concerns he had about the success of the operation, which worried me, too. I emailed the consultant on Monday morning with a list of these concerns. I wanted to be able to give Harry comfort, but I didn’t know the answers myself. The consultant immediately made us an appointment to go in to see him. He spent 20 minutes with Harry, examining him and discussing his concerns. The outcome of this assessment was that the operation so far appears to be a huge success and the couple of concerns Harry had are just things that will settle down in time." 

Ian describes Harry's concerns and the responses from the consultant: 

• His actual head posture was turning slightly to the other side now (by about 5 degrees). The consultant advised this is fine. When his muscles settle down post op they will move towards the original position. In 2 months’ time we should pretty much see a straight head posture.
• When harry was opening his eyes slightly and not focusing on anything his eye turned in towards his nose on the right side. This is part of the new eye position. Once Harry can open his eyes properly, without pain, his eyes will naturally find their null point with his head looking forward. This is expected and no concern.
• Harry noticed his peripheral vision to the right was vastly reduced. This again happens naturally as a result of the new eye position, but, once Harry is fully using his eyes, his brain will adapt to this and he will automatically turn his head to see. In theory he had poor peripheral vision on the other side when he turned his head, so this is just something new. 

“The consultant was brilliant and quick to allay our concerns.”

Harry continues to recover. Ian writes:

 
“Day 7 after the op Harry is able to open his eyes for longer periods, the blurry vision is settling down and he is able to see much better. He still has to have eye drops 4 times a day for the next month and is taking pain relief still. He is really positive about the outcome, although he is a bit bored, spending his summer holidays stuck in the house.
 
“In terms of the pain, Harry has been really brave and coped very well. I would say that during the first 2-3 days he has been in a lot of discomfort, particularly when trying to open his eyes. Now he would describe it as an ache and a more irritating, itchy feeling (the stitches in the eye). Trying to stop him rubbing his eyes has been a challenge.”                     PLEASE READ ON ...

Nearly 2 weeks after surgery, Ian writes:

 
“Harry is able to open his eyes pretty much as he did prior to the operation. The soreness around his eyes has calmed right down. He is still a little bloodshot, but his eyes look so much better than they did the first 7 days. Harry has commented that the pain (which is bearable and more of an ache) is less at the front of his eyes, but more of an internal ache from the back of the eye. His vision is settling down and he thinks it’s now similar to pre-op, but looking straight ahead.
 
“Harry is getting used to a change in his peripheral vision, following the change of eye position. The consultant said this is natural and his brain will retrain to adapt to this shortly. The best news is his ‘null’ point is still there, but in the new eye position.”
 
This is the end of Ian’s account, though he has promised to update us as Harry’s recovery continues. We wish Harry and his family well and thank them for sharing their story.
 

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