Dealing with Nystagmus

Hello there, I have been suffering from congenital nystagmus since birth. My vision has been poor and I have been struggling with daily activities. In addition I have to turn my face towards the left to see small objects. I have been living in despair. I recently underwent surgery for nystagmus at an eye care centre in Navi Mumbai - Utsav Eye clinic http://utsaveyeclinic.com Although my need to turn my face had reduced my vision has not improved a great deal. Recently my doctor mentioned about Brinzolamide eye drops for nystagmus. Does anyone have any feedback about these eye drops. Any help would be greatly appreciated.

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Re: Dealing with Nystagmus



Hey guys, my little brother has nystagmus and I am currently doing a project on 'wearing intelligence' (smart fabrics) and was wondering what problems you faced in your daily lives? I have seen stuff about balance and lighting etc, but is there anything specific with these factors? Can be at work or doing activities? Literally anything!

Any research you can help with will be much appreciated and acknowledged accordingly.

Thank you!


Re: Dealing with Nystagmus



Hi Tom,

I think the safety of vaccinations/ the vaccination schedule depends on the underlying cause of nystagmus. I would definitely discuss your concerns with your child's team of medical providers.

Shannon Carollo
Teacher of Students with Visual Impairments


Re: Dealing with Nystagmus



Hi,
Do you vaccinate your child born with nystagmus? Is it safe?

Tom


Re: Dealing with Nystagmus



Hello Arashi:

First let me apologize for not answering sooner. I want to compliment you for reaching out on your own and for starting to take responsibility for learning more about your eye condition and depending less on your mom. I don't know how old you are, but until I was an older teenager, I let my mom explain my eye condition. It's so much better when we do it ourselves.

You may have seen my post to Mprasad yesterday. I'm going to ask you some questions also. Below is some information about the questions you asked, but I can do better if I know more.

1. Do you know your acuity, for examples, 20/70, 20/100?
2. Do you wear contact lenses or glasses? Can you read? If so how big is the print?
3. Have you had any surgeries on your eyes, such as the ones I mention below?
4. Did you not know until now that you have nystagmus? Can you not see your eyes moving?
5. Do you have a vision teacher or a vision rehabilitation teacher or orientation and mobility instructor?

In case you don't know what has happened to your eyes, I have tried to write a description of Peter's anomaly, but it's very basic.
During the development of the eyes before birth, the front part of the eye forms three separate structures. These are the cornea, the iris which is the colored part, and the lens. The cornea is the very front of your eye and it's clear in the normal eye. Between the cornea and the iris is a space that has liquid. In the middle of the iris is a hole called the pupil. Behind the pupil is the lens with some space between it and the iris. In Peter's anomaly, these parts of the eye do not develop correctly. No space develops between the cornea from the iris or the lens. As a result, the cornea is cloudy instead of clear, which causes blurred vision. In the normal eyes, the cornea and the lens are clear and are the parts that let you see to read.

If the normally clear cornea is hazy and white, vision will be blurred. The more hazy the cornea becomes the more blurred the vision will be. Vision can be worse in bright light. This is like trying to look through a dirty car windshield into low bright sunlight or approaching car headlights.

Peter's usually affects both eyes. One eye is may be less affected than the other.

Because the cornea is hazy from the time of birth the eye may develop a condition called Amblyopia. The brain can only learn to see as clearly as the picture given to it by the eyes. If the brain has not been given a sharp, clear picture by the eye because of the hazy cornea then it cannot learn to see clearly. Even if a hazy cornea is replaced by a new, clear cornea through an operation, the vision may still be blurred. This is because the brain has not developed the power to see clearly.

Some children with Peter's Anomaly can have other conditions of the eyes. These might include:
• Glaucoma, damage from raised pressure in the eye because the liquid cannot flow freely. This can cause tunnel vision because the pressure damages the nerve that controls vision.
Have you been tested for glaucoma? You should be tested frequently.
• Nystagmus, constant to and fro movements of the eyes. This may be related to many things: the muscles that let you move your eyes, the size of your eyes, the amblyopia, or something else.
• Microphthalmia, a small eye.
• Cataract, a hazy lens possibly at birth.
Do you still have your lens or has it been removed?
Treatments for Peters’ anomaly: Removal and replacement of the cornea; Laser treatments on the iris to help the liquid circulate; and prevent glaucoma, and removal of the lens if it is a cataract at birth or if it is stuck to the iris. Glaucoma can easily form with Peter's, because the liquid that circulates between the lens/iris and the iris/cornea in the normal eye may not be able to circulate or at best circulate poorly.

Treatment for spectacle correction and amblyopia treatment should be initiated as soon as possible. Did you have glasses when you were a small child?

If you have difficulty doing daily tasks, try doing some things without using your vision. Sometimes it's easier and faster. There is lots of information on this website. CHECK IT OUT!
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MPrasad:Re: Dealing with Nystagmus



MPrasad:

Below is some information that may or may not help improve your vision. I need more information from you to know how best to respond to your post. I do sense your desperation perhaps you are even feeling anxious, especially if the surgery did not meet your hopes.

What eye disease or condition do you have that has caused the nystagmus?
You stated that you must turn your head to see small objects. Do you know what your acuity is? That is what you can see on the eye chart or see when you read up close—20/40, 20/70, 20/200, for examples. Having this information may help me respond better.

Prognosis
Congenital nystagmus is usually a benign condition. It is not curable, but its symptoms can be diminished with spectacles or contact lenses. The best corrected vision for most individuals with congenital nystagmus is between 20/40 and 20/70, but correction to 20/20 is possible for some people.

Treatments for Nystagmus
Do you wear glasses or contact lenses to see and read? For 85 percent of children with nystagmus, a spectacle prescription (regular glasses or contact lenses) improves vision significantly and Contact lenses slow down eye movements.
A prism may be put in glasses to help position the eye at its null point (that's the part of your vision where you can see the small things) or to help the eyes work together.
Have you ever had vision therapy or do you use low vision devices? Low vision devices such as telescopes and magnifiers may help people if their vision cannot be fully corrected with spectacles and contact lenses.
Tinting of the glasses or sunglasses may decrease the nystagmus of individuals with albinism.
Acupuncture and biofeedback and vision therapy have been successful for some patients.
Do you know what part of your eye/eyes was operated on? You probably had surgery on the extraocular muscles of the eye. These are the muscles that let you turn your eyes to the left and right and let you look up and down. You probably had the surgery because you were turning your face to see objects. Surgery to correct a muscle imbalance sometimes improves nystagmus and visual acuity.
There are nonvisual techniques you can learn to help you improve daily activities. Some people with low vision find it easier and faster to use many nonvisual techniques instead of their vision. This site has lots of information that you might find helpful.


Re: Dealing with Nystagmus



I just found out I have Nystagmus apparently this was something that has been going on my whole life but the doctors are just now figuring out that that is part of my issues with my good eye. I have Peter's anomly in both one fullly and the right one partially. They tell me they really don't know what the partial peters is doing and why now I am experiencing tunnel like vision and realizing I have the Nystagmus apparently it is something that is often with this eye disease. I have Asperger's Syndrome or now would be referred to as High functioning Autism so they also believe that some of it is related to how I am now more able to verbalize what is going on rather than relying say on my mom to tell them my symptoms.


Re: Dealing with Nystagmus



Hello mprasad:

This is Maureen Duffy, who monitors this board. I can give you information about brinzolamide (brand name Azopt), which is in a class of drugs called carbonic anhydrase inhibitors, used in the treatment of glaucoma. These drugs decrease pressure in the eye by reducing the amount of fluid produced by the eye itself. You can read more about them at this link on the VisionAware website: http://www.visionaware.org/info/your-eye-condition...

I hope this is helpful to you as you begin gathering information.

Maureen


Re: Dealing with Nystagmus



I am also wondering if anyone has had any success with something non-surgical. Our almost 7 year old son also has congenital bilateral Nystagmus as well as optic nerve atrophy in the left eye. He had a significant head turn but has the kestenbaum procedure at age 3 which helped the head turn from 70 degrees to now 10-20 degree turn. I am curious to know exactly what he sees, but he is just now able to verbalize how he is seeing. The Ophthamologist tells me the Nystagmus probably doesn't bother him too much because he was born with it, but I would love to hear your perspective on this. Thank you very much!


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