Jun 292012

As yet, there is no cure for congenital nystagmus. But there are operations that can help slow it down and increase vision (by seeing more, faster, and having a wider field of sight).  The null point can also be centred to prevent head turns and associated muscle strain.   

So far, we’ve been advised we won’t know whether Jack needs surgery until he is at least five.   However, having seen lots of posts about children younger than this having surgery we are keen to find out more.

Chris McMillan shared a link to the Daroff-Del’Osso Ocular Motility Laboratory (OMLAB) website which is a good resource for surgery options and up to date research.  We found the nystagmus patient handouts (at the bottom of the Reports and Teaching page) most helpful as they are written in easy to understand terms.

They describe nystagmus surgeries including the Anderson-Kestenbaum procedure (AK – cutting and reattaching the eye muscles in a new position to centre the null point), Bimedial Recession (BRM – moving the eye muscles to enable you to focus further in the distance), and the Tenotomy and Reattachment procedure (T&R – cutting the eye muscles and sewing them back in the same location).  They explain how cutting and reattaching the eye muscles in each of these operations can slow the nystagmus by slackening tension in the muscles.

The third patient handout on the Tenotomy & Reattachment Procedure shows a before and after example of how the surgery can improve vision, and provides interesting history on how the idea came about –

 “The T&R procedure was first conceived in 1979 when Dr. Dell’Osso analyzed the eye movement recordings from INS (Infantile Nystagmus Syndrome) patients who had AK surgery. He found that the null point of those patients was not only moved and but broadened also. Moving the eye muscles shifted the null point, but did not explain the broadening effect. He then hypothesized that cutting and sewing back the muscles without moving them would achieve the broadening effect. This hypothesis was tested 20 years later, in 1998, on a dog with INS. The T&R procedure greatly reduced the dog’s nystagmus. In 2001 and 2002, two National Eye Institute clinical trials were performed on 10 adults and children, and the T&R procedure had positive effects on most of the patients. Several hundred patients have had the T&R procedure since then. AK and BMR, which have the T&R procedure as part of them, have been performed for more than 50 years.”

You can read more about the dog studies and view videos of pre and post surgery results on the Canine Ocular Motility Laboratory (COMLAB) page.

The fourth patient handout on Nystagmus and Visual Acuity contains helpful information about waveforms (a type of eye movement measurement) which are used to calculate how well a person with nystagmus can see, and determine how well an eye operation has worked.  The Software and OMS Models page contains a function called NAFX (eXpanded Nystagmus Acuity Function) which uses this and othe eye measurements to predict the best possible visual acuity a person with nystagmus can achieve.

The UK Nystagmus Network also has links to surgery related research – see the NICE (National Institute for Health and Clinical Excellence) guidance on tenotomy surgery for nystagmus and Surgical management of nystagmus within section 7. Published Research.

We’ve still got a lot to learn but what we’ve read about surgery benefits so far is promising.  We welcome hearing about other research and any personal experiences you have.

  4 Responses to “To operate or not to operate?”

  1. From what I understand, from talking to other parents, and Dr. Hertle, it’s best to do the surgery before 24 months because they heal prior to/while their brain is learning and acquiring vision (I’ve learned that children don’t fully develop their vision until about age 6), so they heal and respond better to the surgery, and their vision actually improves more. I am curious why the doctors you have spoke with would wait until age 5?

    • Thanks Ashleigh. Our Dr said it’s best to wait to operate as the eyes change a lot in the first five years. What Dr Hertle says seems to make a lot of sense and we believe this theory. We’d like Jack to have the operation sooner rather than later if possible. Here in the UK it’s hard to know to what extent we are overly cautious and constrained by our National Health Service (which prioritises based on evidenced long term benefits to patients). Whilst we’ve found research showing the success of nystagmus surgery, we’ve not yet found any showing the benefits of having the surgery at an early age. Are you aware of any such information? Claire x

  2. I am curious if there is any update on this post. Today we were told my son who is six was a candidate for the AK or TO surgery due to his nystagmus. Obviously I am hesitant and doing my research. Did you go through with it? Were there results? Thank you so much.

    • Hi Joseph, Jack turned 3 in December. We’ve not been offered any surgery as yet. Fortunately his null point is fairly central (slight head down to the left tilt). I think we’ll face a similar decision when Jack is around your son’s age, or his Doctor advised some parents wait and let their children make the decision themselves (often in their teens). Best of luck with your research and in making your decision. Claire x

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