Harry has undergone the Anderson Kestenbaum procedure this summer to address his marked head turn. His Dad, Ian, has asked us to share their experiences. A few days after the operation it was time for father and son to have a chat about how things had gone.
On the Sunday post operation I had a catch up with Harry and he mentioned some concerns he had about the success of the operation, which worried me, too. So 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 all the 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.
These are some of their concerns and responses from the consultant:
- His actual head posture was turning slightly to the other side now (by about 5 degrees)
The consultant advised that 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 was 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 fully expected and no concern.
- Harry noticed his peripheral vision to the right was vastly reduced.
This again is naturally going to happen 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.
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.