Newbie: 4 year old daughter diagnosed w/ Ocular Albinism, Strabismus, Nystagmus
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January 25th, 2009, 04:34 PM
Join Date: Oct 2007
Location: Winston Salem NC
Hi my anme is Lindsay and I am new to this board as well, not to Jm. Welcome!!! My son Dylan ws diagnosed with Congenital motor nystagmus at 4 months....we were told that he may eventually go blind or he could lead a perfectly normal life!!! We have been to 4 drs, to get different opinions...we are going to Akron childrens hospital in april to see a dr that does the horizontal tenotonmy surgery. I have communicated with the dr and sent all MRI,CT, EEG and other reports and he believes he can really help Dylan...
Have you ever heard of that surgery?
I would love to hear what all you have gone through the past few years dealing with nystagmus...
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