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dislocated lens

My daughter was born with a dislocated lens, not due to marfin, but more idiopathic. We are going every 6 months to the opthamologist.  She is now 9 years old. I know that she needs in the future a lens removal.  Are there symptoms that I can see if it is time.  Every 6 months, I am a nervous wreck.  I think all the time, now we need to do it.  

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233488 tn?1310693103
MEDICAL PROFESSIONAL
The most common cause of dislocated lens after trauma is Marfan's syndrome

JCH MD
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Avatar universal
I am 31 and born with both lenses dislocated (had very bad vision). Had left one out as also had a cataract. Have 6 monthly checks also. The right one has moved a little over 30 years but is still very stable. And yes she would notice if it became a problem.
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233488 tn?1310693103
MEDICAL PROFESSIONAL
"That's a good thing"
JCH MD
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Avatar universal
Thank you!!!!!! this give me some rest
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233488 tn?1310693103
MEDICAL PROFESSIONAL
If the lens moves out of the visual axis the vision will be extremely blurred and easy to tell.
JCHMD
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Avatar universal
Thank you.  I guess, she is very lucky that her lens is still in place and did not move to much.  Our doctor tells us the same.  I will leave the lens alone so lang her vision is ok and no other problems.  If it occurs that we need to do a lens extraction he will not put in an IOL. He does not like to do this with young children.
Do you know when the lens become more dislocated if my daughter would notice this?  Would her vision become worse? I guess I like to know if that is something an eye exam only can tell or if she can notice it?  
Her dislocation is due to ectopia lentis et pupillae
Thanks
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233488 tn?1310693103
MEDICAL PROFESSIONAL
Generally if the dislocated lens is stable (and it must be to go this long) and she can see through it and focus and does not have lens induced glaucoma the lens is left alone. Dislocated lens removal and IOL insertion on a 9 year old is not an easy operation and if she's doing okay leave it alone as suggested.

JCH MD
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