Operation to Move Null Point - Kestenbaum Anderson

[mckelvey@cogeco.ca]

Hello Mum of 15 month old.... and everyone else as well. I am new here, JUST had null point surgery on Wed. the 24th of November, on all four ocular muscles. I am 39 and have had Nystagmus all my life. I thought I went in educated, was told it was a piece of cake surgery with no more than some moderate discomfort, since they were doing both eyes, all 4 muscles. Came out with two eyes that had not only no whites left, but that had bags of blood hanging out over my bottom lid. The next day at my post op exam, I thought the doctor would be shocked but he said it was normal.

I have been in so much pain it's crazy (and I am very tolerable of pain) plus I can't goo anywhere without sunglasses on. Also, my eyes no longer point straight out, one does but the other tilts outward. It is my right one, the one where they put an adjustable stitch, just in case this exact thing would happen. I was told at my post op that my eyes lined up just fine. What did I know, at that time, I couldn't even see!

So, it's still too early for me to give you a full opinion of whether the surgery was worth it. Funny, I had the exact thing your son has, but to the left! I will say that I will never undergo this procedure again, even if they suggest it to fix my seemingly crooked eye. If you wish, I can keep you updated on my healing process, I can tell you that my next follow up is in two months, that has to say something about how long it takes to heal. As of now, I regret the surgery however I am hopeful that this opinion will change.

As for your son, it gets harder for kids like him and I the older we get. I can't count how many times I was made fun of in school etc... even as an adult at work being asked "what are you looking at, I'm pointing THAT way"..... This was why I decided to get it done, I just wanted to be able to look straight!

I'm sure you've had lots of positive feedback as well though!!

In good health,
Susan

[mckelvey@cogeco.ca]

Sam, as for your question about the correction rate, my specialists said minimum 25% to a max of 80% correction. Also, that 5 degree head turn thing is totally true, for me at least. I keep finding myself shocked that I can even see straight with my head turned that way! One more thing, I have had horrible neck pains my whole life and believe it or not, even after just four days, I feel a relief from the pressure.

Sorry to have been a bit negative with my experience, it's just been frustrating so far.

I'd like to know what you decide and how it goes for Leo.

[mckelvey@cogeco.ca]

To carolcato: I had the same thing, with turning my head up, almost looking out my nose, my Neuro opthamologist told me that this is where my actual focal point is, although it is unrealistic for me to see and live at that position, it's my brain telling my head where to go. I still do it sometimes, consciously, just so I can try to see things I otherwise cant!

[spaceface76]

Hi Susan

Thank you so much for your post. Just wondering where you are located?
Well my 15 month old is now 4 and a half. He was due to undergo his surgery in October but the Professor cancelled due to sickness. Funnily, I had a call yesterday morning to say that she's back at work on Monday and they want to operate Wednesday next week

We are pretty much all set for it now (although I'll always wonder whether I'm making the right decision). I was very sceptical and finally made my mind up to go ahead, for it then to be cancelled. Professor Gottlob will be Leo's surgeon. As far as I am aware she is the country's leading authority on Nystagmus (possibly the World's). When I heard that she was ill, I panicked that she may never come back or could possibly take early retirement. I think we have an amazing opportunity that I will forever kick myself about if we don't take it.

Leo has started school now and should be wearing glasses for an astigmatism but can't as he can't see through the frames. We hope after the operation, with his null point in a more central position, he should be able to wear his glasses and have much better vision.

Leo seems to cope so well at the moment, you'd hardly know a thing was wrong. I find the thought of going through an operation when life is just fine at the minute extremely daunting. It's by far the hardest and scariest decision I've ever had to make. I just hope everything goes 100% to plan.

I hope that you are starting to feel better now. What have you been taking as pain relief? Apparently Leo will have an pessary for pain relief initially and then he should just have usual kids pain relief.
Bags of blood! That sounds absolutely hideous! I have been told to expect lots of redness but no one ever said anything about bags of blood! Have they gone away now? Any advice that you can give me about what Leo will need afterwards (ie sunglasses) will be such a help. As a four year old, he won't really understand what he needs so I will have to figure it out myself.

Could you see after surgery? How bad was it? How long did it take to get back to normality? Your second post sounded slightly more positive with regards to your null point. We haven't been told anything about an adjustable stitch.
Also on your last post you mentioned needing to look down your nose - was that where your null point was? Leo's only having his horizontal muscles operated on. I'm wondering whether you had vertical operated on also?
I've been told they'll see Leo next day and then the next week and every two weeks for a while. He won't have his eyes tested (with the stingy drops) for three months to allow for healing.

Anyway, thanks again for your post. I'm so sorry you feel so bad about the operation at the moment, I just hope you get better soon and find it worthwhile in the end.

Thanks and all the best
Sam

[Mike H]

Hi Sam,

I've posted on the Horizontal Tenotomy thread. At the time of writing this it hasn't been approved/appeared but I'm hopeful that will happen and a second post on my actual op will be completed later. I hope it helps.

Mike H

[Sofie2]

I have asked my consultant about this operation. I have to have some tests done before the operation to check if I can have this operation done.

Anyone know what these tests involve?

[spaceface76]

Hi guys

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!

[spaceface76]

Hi Sofie

I'm not sure what the tests would be. Perhaps to see what sort of head turn you have - horizontal or vertical. Have you had the test for albinism? Maybe that also. They also wanted to video Leo's head turn before and after surgery. I believe so they knew how much muscle to remove, but also to see how well the operation worked out. Leo's was such a success that they wanted to use his at the university to prove how successful the kestenbaum procedure can be.

Good look with your consultants. I hope they can do something for you

[Mike H]

I would think this would be no more than Eye Movement Recording; checking your gaze dependent vision (how you see from different positions) and maybe a video just so they can visualise what's going on. Basically it's just stuff to decide how you look now and how far your muscles would need to be moved. Might get repeated so they get two lots to compare as, for example, your head/eye position may be much worse first time around as you might not know what the tests involve and be stressed or anxious. My head turn veered between 10 and 30 degreas left depending on such things.

Mike

[Sofie2]

Thanks you two.

I've not had the test for Albinism. They do know what the cause of my Nystagmus is - I have bilateral optic atrophy.