What, no lifetime warrantee?

It’s been some time since I last posted an update regarding my son Nicholas and his experiences with glasses and patching.  N has ectopia lentis, a congenital condition that causes a laxity in the fibers that hold his lenses in place, as a result the lenses can move, or dislocate, from their proper position.  This has led to a high degree of myopia as well as anisometropia.  Anyhoo..after several years of success with patching to maintain vision to the best possible, we learned a several weeks back that the lens of his left eye has moved to a position where it is no longer providing useful vision.  (He’s -8.5 R and -23L.  Lately we’ve not been able to gain acuity beyond 20/200 L)

So..we’re gonna have it replaced.   Huh? 

I always thought such things carried a lifetime warrantee.  Such is not the case it seems.  Surgery is tomorrow. The surgeon will work to secure the supporting apparatus of the inner eye and hopefully implant an IOL “in the bag”, complex terminology for “right where it needs to be”.  Otherwise, suspend the new lens in the place where the bag used to be, if things go differently.  A new frontier for us to say the least.

I’ve written infrequently, but visit this site often, sharing and leveraging the collective experience of this community.  Hoping those who may have had experience with surgery could share some tidbits of advice.  What’s the post surgical period like? Luck with maintaing the protective cover in place? etc.  Will see you on the flip side and let you know how it went. (personally..hoping he gets the one with the bionic sound effect…)  🙂

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31 responses to “What, no lifetime warrantee?

  1. GeorgeB,
    I don’t have any experience with this, but I wanted to wish Nicholas well for a successful surgery with a fast recovery. (And of course for the bionic sound effect…but that goes without saying.) Please keep us posted!

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  2. Hoping the surgery goes well. We stock up on Gatoraid, popsicles, pudding in the container (per Elly’s request) and fun yogurts for the recovery day/s afterwards. Sounds like his surgery is a little more invasive in the eye than just the muscles so I can imagine the recovery time will be longer… when can he resume full activity? With just the muscle surgery, my daughter slept for a couple days then slowly recovered. We have to avoid pools, the ocean, and be super careful in the bathtub for 2 weeks…
    Please keep us updated… we are rooting for a successful outcome and a speedy recovery.

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  3. Oh, good luck George, to you and to Nicholas. I don’t have experience with IOL implants, but Zoe’s been through 2 surgeries (strabismus and ear tubes). In both cases, she recovered much more quickly than I would have expected – way more quickly than I would have myself – I’d have been asking for all sorts of special treatment and couch privileges, she was a bit moody, but mostly ready to play later that same day.

    The strabismus surgery took longer, and used more anesthesia. She did not come out of anesthesia well. The anesthesiologist called it “anesthesia delirium” and explained it as the case where one part of the brain wakes up before the rest. Unfortunately, the part that wakes up first is the more primal part of the brain, and the part that listens to reason is still under. That led to a screaming, inconsolable child for about 20 minutes, before she fell back asleep and then woke up a few minutes later mostly back to herself. From what I’ve read from others, that’s not an uncommon side effect of anesthesia, and you just have to wait it out. She didn’t have that problem with the ear tubes, but that was with a much lighter anesthesia, and a much shorter surgery.

    Most hospitals let kids bring comfort items, like a doll or animal or blanket, and we did that with Zoe, and that seemed to help. We also talked with her ahead of time in pretty general terms about what would happen. Our doctor recommended that we stay calm and at least pretend that we were in control and that we were expecting anything that came our way, which helps kids feel like, even if they’re unsure of what’s happening, at least they know mom and dad are with them, and aren’t freaked out (even though of course, we were).

    Good luck and let us know how it goes!

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  4. Hi

    I hope your son;s surgery goes well tomorrow. I know its an extremely anxious time, as my daughter, who is seven, has had two operations, each removing her lens from her eye. She now has to wear contact lenses to see. She also had something wrong with the fibres that hold the lenses in place and her lenses moved, and subsequently, she couldnt see properly. When it happned firstly with her right eye, at the age of three, both her dad and I were devastated.

    Now, aged 7, and just recently having her second operation on her left eye, we are much more optimistic about her future.

    She never complains about her eyesight being poor. She can see well enough to watch television, go out ot play, and manages very well at school.

    I’m interested in hearing more about your sons procedure, if you dont mind giving me more information (when you have the time of course). We were told that my daughter couldnt have lenses put into her eye permanently due to her age and the fact she is still growing. She wont be considered for this type of surgery until her late teens.

    Am I right in thinking that your sons procedure involves some sort of lens being put into the eye and not a contact lens? If it does, I’ll be bringing this up with her eye specialist when I see her again in November.

    Very best wishes for a safe and successful operation.

    Lynn

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    • Hi Lynn,
      Sounds like they share similar circumstances. Nicholas’ condition is Ectopia Lentis..displacement of the natural lens of the eye due to weakness of the fibers (zonules) that hold the lens in place. Over time as more fibers fail the lens moves out of position, and essentiall become useless where functional vision is concerned.

      Some Dr’s remove and do not replace..recommending contact lenses or glasses. others for the IOL implant. Highly uncommon in infants, especially with Ectopia Lentis…less to very uncommon in toddlers 2-5,…the size and depth of the eye changes greatly in kids as they grow..hence the hesitation.

      We are anticipating a sucessfully implanted artificial lens…the how and where to be determined once they have examined. I’ll post details on the flip side of tomorrows surgery…

      Like

    • lynn mackay :
      Hi
      I hope your son;s surgery goes well tomorrow. I know its an extremely anxious time, as my daughter, who is seven, has had two operations, each removing her lens from her eye. She now has to wear contact lenses to see. She also had something wrong with the fibres that hold the lenses in place and her lenses moved, and subsequently, she couldnt see properly. When it happned firstly with her right eye, at the age of three, both her dad and I were devastated.
      Now, aged 7, and just recently having her second operation on her left eye, we are much more optimistic about her future.
      She never complains about her eyesight being poor. She can see well enough to watch television, go out ot play, and manages very well at school.
      I’m interested in hearing more about your sons procedure, if you dont mind giving me more information (when you have the time of course). We were told that my daughter couldnt have lenses put into her eye permanently due to her age and the fact she is still growing. She wont be considered for this type of surgery until her late teens.
      Am I right in thinking that your sons procedure involves some sort of lens being put into the eye and not a contact lens? If it does, I’ll be bringing this up with her eye specialist when I see her again in November.
      Very best wishes for a safe and successful operation.
      Lynn

      Hi lynn

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  5. Success. Supporting apparatus’ warrantee didn’t play out as hoped for. After a lengthy visit on the difficult end of the spectrum, the Dr did achieve a successful implantion.

    Post op period…not so much fun. But improving. We’re suddenly very adept at putting myriad drops in the eye of an angry..moving target.

    Who knew so much ice cream and ‘stuff’ could fit in such a small carriage.
    🙂 More soon…

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    • Thanks for the update, George. I’m so glad the implantion (sp? is that the right word?) was successful. I hope that Nicholas’ recovery goes quickly and easily – ice cream always helps. Any word on if the bionic sound effects worked out?

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  6. Hi george,

    How is your son doing? I just went today to the web site and found out. Hope everything is going fine. How is his vision? Probably much better now. Did you do one eye?

    suzy

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    • Doing great. Only the left eye was operated on, the right does not need it presently. Now three weeks post surgery and back to daycare as of today. Recovery was mostly uneventful. Lots of drops and hovering but all has been ok. We went to the PO last week for the first evaluation post surgery…from 20/200 to 20/80, possibly a slight astigmatism. Too early for a new prescription as the eye is still healing, so we continue with patching 4 hrs/day and no prescription for that eye for a few more weeks. Optimistic that the 20/80 will continue to improve with time..

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  7. That is great news!!! I am very happy that your son is doing great. The post surgery numbers are great!!!!!!

    Since i am learning a lot about these IOL implants, I hope you do not mind I have a question. If you have the implant, can you still have astigmatism? and also, does he need glasses?

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    • Yes, you can still have astigmatism. it can occur as a result of the positioning of the IOL. He still needs glasses. Every situation is different from what I gather…regardless of the outcome for the operated left eye..his right still needs the correction. Our targeted outcome is a slight myopia when all is said and done to remain at least somewhat in line with the right.

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  8. Doing great! We just had the follow up exam under anesthesia yesterday, and to remove remaining stitches…all is well. The IOL is well positioned and no inflammation or concerns to report.

    At our last PO visit about two weeks ago, the left eye with IOL was at about a +2 (from a prior -23), and the surgeon yesterday affirms that he’s pertty close to plano on the left. Our understanding is that there will be some additional change in the prescription over time, but presently he requires no prescription for the left eyeglass lens and just has a plano in the glasses.

    We continue with the patching 4+ hours daily to help prevent amblyobia as the brain sorts it all out. On a day to day basis, there’s been plenty of improvement with the left eye. Whereas before when he had the patch over the right, he would basically have to pring items up to his nose to view…now he waves at us from the window of his preschool…across a parking lot! Good stuff.

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    • Time will tell whether the other eye will need it. For now, we’re thankful recovery has gone so well, the doctors were so diligent, and that all the time spent patching have played out to his advantage.

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  9. Hi George,

    It is almost a year ago that your little one had the operation. How is he doing? Hope everything is going well. Phoebe is still stable, and we have tomorrow another appointment. Last time we had to stop patching. Her vision was stable for 1 year ( 20/35). We will see what it will be tomorrow. It is now 4 months without a patch. The first time since she was 3 years old.

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    • Hi Suzy,
      Thanks for asking. I’ve been meaning to post an update. He’s doing great..we were just at the PO about a week ago. The right eye is stable with no change, and the left eye (the operated one) remains clear, the lens centered and with excellent vision. He tested at 20/25 (corrected) in both eyes at this last appointment and still no rx required for the left. We continue patching between 3 and 4 hours every day and overall everything is going great.

      Hope all goes well with your appointment. Please update when you can.

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  10. Her appointment went well!!!!! Her eyes are stable and mom can relax again. We still do not need to patch and will see the doctor again in 6 months.

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  11. Hi George,

    It seems each year around the same time i am looking at the webpage. How is he doing? Hope everything is going well. My daughter is doing ok. Vision is still stable. However, we did stopt patching for 6 months, and now she does not see that well. We are starting to patch again for 2 hours a day. We are going back in a month. How old is your son know? Phoebe is already 11 years old. Hope everything is going well.

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    • Suzy,

      Hi. Good to hear from you. Another year passed, and still going strong. He fluctuates between 20/30 and 20/25 in both eyes and overall the vision has been pretty stable. He’s about a -9.5 R and +1-ish on the left. We too had a break with the patch for a few months earlier in the spring. Same here, N had a bit if a setback, so we’re at a regular 3 hours a day. (after some distress and resistance getting back into the groove….)

      Good to hear from you. Time goes so fast.. He turned 6 in August…kindergarden flew by and now 1st grade…He is in to Karate.. Soccer..too…

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  12. Hi again, Sorry, I’m just getting a chance to read all of your posts! This one interested me as we’ve been advised against letting Josh play any kind of contact/ball sports due to the risk of the lenses detaching further… Have you had any of the same discussions?

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    • No worries, this is the most action i’ve had on here in forever. My pleasure.

      In the beginning we discussed everything, from his wearing a foam helmet, to never playing sports. Then we worried about whether he’d ever play football. In the interim…he’s fallen and bashed his head I dunno how many times… has had two sets of stitches on his head.. broken umpteen pairs of glasses… last year he took up karate…soccer. always has a bump on his noggin.

      I dont think we’ll encourage full contact sports…. but, he’s six. life goes on.

      What’s the worst that can happen…his lenses might dislocate or something.

      What we’ve learned in the interim is that any eventuality can be repaired. So we go forward, cautiously where needed…but at this point generally without worry…

      .

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  13. Hi George,
    An other year passed again. Hope N is done great and everything is going well. We have our appointment this week, and of course i am nervous again. I will let you know how everything went.

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    • Hey Suzy,
      Good to hear from you. Good timing. As it turns out we just had an exam this morning. All is good and holding steady. in the 20/25 to 20/30 range in both eyes and everything looks good. We even managed an intraocular pressure test today in the office and all was normal. Prescription has remained steady now for over a year.

      Do follow up with the results of your apppointment!

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  14. Hi George
    This is every long time ago!!! How is N doing? he most be 10 years old now!! Phoebe is 15 years old. She has again an eye appointment soon. It is still very scray for me, but with now she is older and she thinks I am crazy! I am seeing fine is her answer all the time. I will keep you posted on her appointment. How are the implants?

    Suzy

    Like

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