I am sorry this is long overdue, I’ve been having problems getting into my account.
So as most of you are aware, Leo has Nystagmus, he had a very severe head turn to the right, holding his eyes to the left. He has congenital idiopathic Nystagmus. We don’t know of anyone else in the family with the condition. Leo also has an astigmatism and needed to wear glasses for this, although couldn’t see through the frame with his head turn.
Leo’s consultant is Prof Gottlob and her team. I was told that as Leo’s head turn was so severe that he would need to have surgery to try to move his null point into a more central position. Hopefully then he’d be able to wear his glasses and wouldn’t suffer from so much neck and back pain as he grew older.
We were told not to expect miracles, that he would most likely need more than one operation and that his eyes probably wouldn’t point straight ahead. We were also told that he would lose the ability to turn his eyes to the right as if he could do this he would continue to use his head turn.
So, Leo had his surgery on 1st December 2010. I can honestly say that it was the most traumatic experience I have ever been through and the decision was without a doubt the most difficult I’ve ever had to make. Saying this, Leo was incredibly brave. He walked upstairs to the operating theatre holding my hand. He made no fuss at all and didn't cry once. They had difficulties with the canula and so used gas. Leo fell asleep in my arms as calm as could be. When he was out of ear shot, I cried like a baby!
The surgery probably took about 4 hours – including anaesthesia. When he came back to the ward, he slept for the rest of the day. At the time of surgery Leo was about 4 and a half years old. I managed to get Leo to go to the toilet and eat and drink before 8pm so that we could go home. At home, Leo didn’t open his eyes for five days. This was a very scary time! The threat of an appointment at the eye surgery for the doctors to open his eyes was the only reason Leo was brave enough to open them. He sat quietly in the bath, opening them very slowly.
When he first opened his eyes, we had mixed feelings. Obviously we were overjoyed as he told us he could see but they were still extremely red and they appeared to point outwards a little.
After time the redness lessened, although even now after six months the whites of his eyes, one in particular, are still very pink, but it is fading.
We have since had many follow up appointments at the hospital and I am elated to say that the operation was a complete success!
Leo’s head turn has COMPLETELY gone! He now looks straight forward and wears his glasses without a problem. He has very slight exoforia (where the eyes both point outwards slightly – not noticeable) but this is to help control his Nystagmus. Leo has to pull his eyes together and this lessens the wobble with his Nystagmus. Sometimes when Leo is very tired he will cover one eye (he did this a lot after the operation).
Leo’s prescription due to his astigmatism is now worse than before although I’m told this could be as it’s hard to examine the eyes with such a severe head turn.
We couldn’t be more happy with the results of Leo’s surgery. You can barely tell that he has Nystagmus at all now. His teacher at school is convinced that there’s absolutely nothing wrong with him. This morning, she was telling me that his writing is so small, even she has difficulty seeing it!!!
I know that we are incredibly spoilt to have Prof Gottlob and her team as our consultants. They have done an absolutely amazing job. They have changed Leo’s life forever and we couldn’t be more happy!