Guest post – Harry’s null point surgery decision

15 year old Harry has undergone the Anderson Kestenbaum procedure this summer. Parents often ask what null point surgery involves. Thorough consultation with the ophthalmologist and the surgical team are key.  Harry’s Dad, Ian, asked us to share his son’s experience.

Ian, writes:

My son, Harry is now aged 15 and was born with idiopathic nystagmus. Luckily for us all, Harry has relatively good vision and has a null point which enables him to control the nystagmus and see. The downside to this null point is that he has a 40 degree head turn.

My wife and I made a decision when Harry was young that we would not consider surgery on his eyes and that if this ever happened it would be because Harry wanted to and 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 glasses with prisms meant that this wasn’t a particular success.

Harry went to the opticians about a year ago on his own and during his chat with the optician 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 for Harry.

Please see Ian’s next post for just some of the questions the family had and the answers they received from Harry’s consultant.

Null point surgery is not for everyone. Please seek advice from your ophthalmologist. The Nystagmus Network does not endorse or otherwise any particular medical treatment. We are simply sharing one family’s experience.

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