My Daughter is 17 years old. She has Retinitis Pigmentosa. in the past year she has noticed her eyes shaking. recently it has gotten worse and her eyes constantly shake, this is causing even more reduced vision, headaches and dizziness. She has has urine test, MRI, X Ray and all have turned up clear. Please help us?
Have her go see a neuroophthalmologist or pediatric ophthalmologist to evaluate the cause of her shaking eyes. This probably represents nystagmus. In certain cases this can be reduced surgically by a pediatric ophthalmologist or strabismologist. You first have to figure out exactly what is going on. If her vision is already very poor, there may not be much that can be done.
She has already seen the neuroophthalmologist, he has sent her for a number of tests including an MRI and it has turned up that there is nothing there. He sent us away and told us to come back in 12 months. She is sick and has headaches from the constant eye shake and her vision is reduced quiet considerably to what it was before the eyes started to shake. There must be something else we can do or try?
OK. Now consider consulting with a pediatric ophthalmologist to see if they would consider doing eye muscle surgery to dampen the shaking. She needs to communicate how the shaking is effecting her life so they are more likely to consider intervention to try and dampen it. Unfortunately, it is unlikely they could stop it. Ideally you would want her to see someone at one of the academic centers that also deal frequently with nystagmus surgery since this would not be considered a simple/routine surgical procedure.
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