Musings of a Marfan Mom

Lens Surgery: What to Expect


While I’m away at the National Marfan Foundation conference and vacation with my family, I will have a few guest posters from the Marfan community. Today’s post is by Allie, a pre-teen. I think it’s a helpful read for any younger children preparing to have their lenses removed.

A few years ago, I found out that I had to have surgery to remove the lenses in my eyes. For most people, lenses are a good thing, but for me, they kept blocking my sight because they were dislocated. I couldn’t even see out of my right eye!

When I found out that I was going to have eye surgery to fix them, the first thing my family did was to get a room at The Ronald McDonald House. It was lots of fun. One if the things I recall the most is sitting in their playroom trying to figure out what to play with!

When we got to the hospital, I felt a little bit scared but of course who would not be scared? I don’t remember the actual surgery because of a medication they gave me which makes you go to sleep. The nurse gave me toys and a little thing that you can watch movies on.

If you need to have surgery on both eyes, then most likely the doctor will give you 2 surgeries. First he will do one eye, and then after a month or 2 he will do the other one.

When the day of the surgery comes you will not be allowed to eat anything before it starts except a glass of water. So no midnight snacks!!! That’s because you are put to sleep and they don’t want you to throw up because the medicine can make you feel sick. You wake up in a recovery room, with a nurse there to help you. After my surgeries, I went home and slept a lot.

Once I woke up, though, and started looking around, I saw things I had never known were there, like the flowers in my dad’s terrarium! So, even though eye surgery can be scary, it ends up being really helpful.

Child with Marfan after lensectomy

Allie after surgery

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  1. Thanks for sharing your story! Even though I’ve been through lens surgery myself, and with my son, it is helpful to hear about it from a younger person’s point of view! I will share your words with my little girl who will be having surgery soon.


  2. Glad to see you came through alright! Enjoy your new view of the world!


  3. ALLIE,
    What an awsome point of view. Sometimes as adults we don’t realize just how smart and talented our young people are. You told your story and letting other young people know what it is like. Thank you for taking the time to write it.


  4. Allie, you’re terrific!! Of course, everyone knows that! And you’re a wonderful writer as well. You know you’re in our prayers and so is your dad. Love to all the family (and especially to your grandparents). Blessings.


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  6. Thank you everyone for the comments. Allie was happy to share her experiences. She loves to write. We hope everyone who has the eye surgery has a successful one. She is now in the midst of braces, and that seems to be going well if anyone needs info about that for children with Marfan syndrome. :)


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