The child is diagonised with mitochondrial progressive external ophthalmoplegia.
A surgery is suggested for drooping eye lids. Please tell us how worse it will become
in the long run? Is it fatal? Will it affect the vision totally? I understand that the cure is
a long way from here for this rare disorder. I would like your advice especially the progression of the disease and its final moments.
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Hello...i would not recommend lid surgery as first option...crutch glasses are first option .....its not fatal if it is CPEO but it may become fatal if it is kearns sayre syndrome...just relax...nothing will happen...if surgery is required tarsofrontalis sling is best bet....
For ptosis, adhesive tape and lid crutches can be used to assist patients with advanced progressive external ophthalmoplegia (CPEO). Bell phenomenon is absent in many patients with CPEO; therefore, ptosis surgery often is contraindicated. Because a silicone sling is reversible, it could be a possibility for some patients. Strabismus surgery can be helpful in carefully selected patients if diplopia occurs and the patient has had a stable deviation for several months.
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