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Acquired Nystagmus and Oscillopsia Forum

Notes from the July 2021 meeting
Notes from Acquired Nystagmus and Oscillopsia Forum – July

Thank you to everyone who joined us for the Nystagmus Network July Acquired Nystagmus and Oscillopsia Forum.

Hospital Appointments
Members of the group compared notes on their experiences gaining appointments with their consultants. Some had seen Neurologists and Neuro-ophthalmologists.

Persistence and tracking down our Consultant’s secretary seemed to be the key. There is also the option to seek a second opinion or a new referral from the GP.

Professor Bronstein appears to be connected with the National Hospital of Neurology and Neurosurgery
https://www.uclh.nhs.uk/our-services/our-hospitals/national-hospital-neurology-and-neurosurgery

For training purposes
As Acquired Nystagmus is little understood and rarely seen, it is sometimes the case that medical students will be called in to see you, to enhance their learning. This can be a very positive experience, but please remember to feel free to speak up if you are at all uncomfortable with this scenario.

ENT
Lots of people with AN seem to go through the Ear, Nose and Throat Department route first, presumably because the balance is impacted. Neurology or Neuro-ophthalmology would seem a better place to be for a more rounded picture.

Registration
The discretionary powers of Ophthalmologists when deciding whether or not to register someone as Sight Impaired were highlighted. The impact on quality of life and the ability to continue to carry out everyday tasks or errands can be taken into account as well as visual acuity.

Please download a copy of the Nystagmus Network digital guide to Nystagmus and Registration for more details.

https://nystagmusnetwork.myshopify.com/collections/documents/products/a-guide-to-registration-for-adults-with-cn-or-an

Therapies
Several members of the group have recently embarked on courses of exercises designed to retrain the eye muscles to take back control of the eye movements. There was cautious optimism that these would be beneficial with the note of caution that the condition allows for only a few minutes exercise at a time, with plenty of rest breaks in between.

Our Families
Being able to call on the support of family members or friends was seen as hugely important to quality of life, practically as well as emotionally.

Our next meeting will be in September
We will invite you to our next Zoom get together which will take place just ahead of the Nystagmus Network virtual Open Day, which is on Saturday 25 September. You can follow progress in our planning for Open Day on our website and well will let you know as soon as booking opens.

https://nystagmusnetwork.org/open-day-2/

Meanwhile, enjoy the summer and take care.

Best wishes
Sue

 
ENDS

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