Attn: Marfans - looking for pediatric ophthalmologist?!

Attn: Marfans - looking for pediatric ophthalmologist?

My 4 year old has 2 dislocated lens. We are looking for a pediatric ophthalmologist to remove both lens and hopefully put in at least one Intraocular lens. Someone please give me a name of a doctor to send my son to. I'm tired of running in circles only to find out the doctors wont even take his lenses out.

6 days ago
I live in Georgetown KY. I'm willing to go anywhere in the U.S... but prefer the east coast somewhere.
Star101 - I went to Dr. Steven... she then refered me to Dr. Bashinsky who is in the same office... Bashinsky said she was leaving U.K. clinic to go elsewhere and refered me to someone else who doesn't even take the lenses out. U.K. clinic is running me in circles.

There are a number of people who could take care of this. Yes, a pediatric ophthalmologist may be good to take care of this. But in Marfans, there are significant dangers with retinal detachments. So you do want to see a retinal secialist in conjunction with the Pediatric specialist before going ahead with surgery. They can decide 'together' who and what needs to be done.

When at Tulane, I had a number of patients with Marfans, who had totally dislocated lenses, that floated around inside the eye, not bothering anyone. As long as the lens did not attach itself to the retina and cause adhesion problems or pupillary block problems, it won't 'hurt' the eye. After all it does live in there.

So if you can get someone to somehow place a contact, or use spectacle that can do the job till she's a little older, you might avoid more serious problems.

Then again, if these are subluxed only partially, (dislocated means completely unattached and free), but the edge of the lens is in the pupillary axis and it's making it impossible to treat with any type of refractive appliance, surgery would be indicated. I'm in California, San Diego area. If you decide you want to come this way, I know a number of people that could help you.

Just be sure you indicate, wherever you go, concerns about the retina, and the possibility of waiting 3-4 years if you can get one, just one eye seeing well now. As she has already developed vision in both eyes, she won't lose vision by not seeing well out of it.

You can contact me anytime if you've further concerns.