May 16, 2013

Intermittent Exotropia: Considering Surgery

It's been awhile since I blogged about Alivia's Intermittent Exotropia.  If you missed my last update, Back to Patching, feel free to catch up.  Additionally, I have a page dedicated to all of our Intermittent Exotropia updates (including resources) so if you haven't checked it out already, have at it! 

CONSIDERING SURGERY FOR INTERMITTENT EXOTROPIA

Intermittent ExotropiaHer last doctor's appointment with the Ophthalmologist was in April but I've been at a loss for words.  Sort of.  We didn't exactly receive terrible news but I wouldn't call it good either.  Apparently the patching didn't reverse the slight deterioration in her left eye like we had hoped.  In fact, I noticed she did worse on her eye tests when she struggled to see objects from a distance that in her last appointment she had no trouble seeing.  The doctor also thought she was seeing the deviation more frequently than usual.  When she asked me if I thought it was getting worse I told her I didn't think so.  Of course, she went on to say that sometimes the eye drops the nurse administers in the office may be the cause of the eye deviating more frequently so she couldn't be sure. With that said, we decided to pass on the drops at her next appointment.  

The next part is good and bad. Her doctor said I could consider eye muscle surgery now.  Now that Alivia has been cooperative with having her eyes tested, the doctor has finally been able to get a true reading (measurement) of how much her eye is deviating.   What does that mean for us?  Good things I guess.  If you consider surgery a good thing.  It means that the chance of her over or under correcting the muscle causing the eye to cross or deviate outward even more is slim.  Yep, that's the good part.  However, I haven't been able to get myself to think about what surgery would entail.  It's quite frightening and concerning to say the least!   Not only that but the percentage of patients needing more than one surgery is too high in my opinion!  Yep, you guessed it, that's the bad part.  

Eyewiki Prognosis for Intermittent Exotropia

So here it goes, my list of things that could happen if we don't have the surgery:

1. Her deviation could become more frequent or worse, permanent!
2. Even if the frequency of her deviation doesn't get worse, the percentage of time during the day it is deviating now is already enough to cause vision deterioration which could eventually lead to vision loss.
3. Although patching exercises the weakened muscle of the deviated eye, it does not guarantee that it will strengthen the eye enough to keep it from deviating at all. Patching her stronger eye (the one without the condition) only worries me.  How much can her dominant eye take before the muscle in that eye weakens from lack of use?  

The plan is to follow up with her doctor again in August where Alivia's eyes will be tested once again.  In the meantime, the doctor suggested patching her eye twice as long per night.  Instead of 2 hours, I am now patching her for 4 hours. We decided to take the aggressive route in hopes to have her vision, at the very least, remain the same.  If it does remain the same, we may be able to put off surgery.  If it improves, than she may not need the surgery at all assuming the eye corrects itself before she turns 8 when doctors consider the eye to have matured completely and vision deterioration can no longer be reversed.  

Realistically, I don't think Alivia's eye will correct itself especially given her family history.  Almost the entire family on my husband's side has the same condition so you can say it's not looking good for her!  I've come to the conclusion that I have the next few months (until August) to get myself comfortable with the idea of her having the surgery.  I think it's the right choice and I rather her have it now while she is still young and will not remember much.  Although I can't begin to imagine my baby in a hospital setting and unresponsive from anesthesia.  My eyes are watering just typing this.  

Intermittent Exotropia

To avoid getting emotional, I'm going to end this post here.  And because I am a see the glass half full type of person, I will keep reminding myself that she could be a lot worse off.  

If you are experiencing something similar, I hope you'll drop me a comment.  I could use the support and I'd love to show you some in return!

If you missed my previous post, Potty Training: the Potty Prize Basket, feel free to check it out!  Also, if you missed the poll I have displayed in my sidebar to the right, I hope you'll check it out and vote!  If you do, thanks a bunch!

17 comments :

  1. Man, I honestly don't know what I would do. I know it kills you that you can't fix it for your baby. I'll definitely be praying for you guys are you make this difficult choice!

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  2. Oh gosh, so sorry to read this. What a hard decision for you to make. It's so hard to think about your child having surgery. I don't have experience with intermittent exotropia but I think if the condition didn't improve by August, I would probably do the surgery. And again that's so hard to say, especially when it's not your child. Wishing you the best! I hope the patching works!

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  3. I'm so sorry to hear about that :( Hang in there, I hope everything goes well after surgery. *hugs*

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  4. Your daughter is absolutely beautiful. I'll be praying for a decision for you and for your daughter.

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  5. Hey First, excuse me for my English, but I wanted to share with you my feelings Do not hesitate, just do it. I know that the decision is not easy /I'm mother whose child is surgically operated on twice! The first time the problem was phimosis, 5 years, 7 years old-hematoma in the head, caused by a fall at school. The first surgery I had time to think and believe me read whatever I could find on the subject, the opinions were different, I had to undergo general anesthesia and ... I can not describe my feelings ... so they understand! second surgery ... I had no time to think, it all happened so fast ... I felt that watching a film -is not happening to me. I will never forget how I was waiting in the hospital before surgery ... I did not know what would happen ... I was trying to set a positive and send energy to the poor child.And this worked!
    Every day I thank God for saving my child! Do not hesitate to do what is necessary and in any case do not let bad thoughts in your head! Everything will be fine! a surgeon, if necessary / my friend had done the same to your child / and everything will be fine! I will pray to God for you to make the right decision!
    lots of hugs!

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  6. Wow, Elena..I honestly can't even imagine how difficult that is for a Mama. Please know that you are all in my prayers. XO!

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  7. Aww :( I've been hoping it was a better outcome- but you're right it could be worse but it's not! I hope August bring better results but if surgery is the course of treatment I will be praying for you guys. I know this isn't easy- I get all upset whenever my son has an ear infection so I can't begin to imagine the magnitude of your worries. Hang in there Mama- Everything will be ok in the end, and if it's not ok- it's not the end!!

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  8. Hold tight, things work out. I'm wishing you the best possible outcome and then some!

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  9. So glad I saw this post. My son is 7 and was diagnosed with lazy eye at age 3. We've done patching several times. His vision is horrible too. He had no 3-D vision and his depth perception was completely off. After switching Drs, we finally ended up going to a pediatric Ophthalmologist. He was wonderful. Explained the issues he was up against. We got a better eye glass prescription and started patching again. He seemed to be doing well. Fast forward to this past August. His sight improved slightly and his lazy eye appeared to be getting stronger. YEAH! We stopped patching. Fast forward to February. His eyes got worse. His prescription strength increased and his lazy eye was back to where it was. Patching again. And the Dr seemed concerned, but offered no other solution. I was sick to my stomach. Then by chance, a friend of mine posted on Facebook how her child had a huge milestone in her life and she thanked her eye therapist. Eye therapist? Didn't know they existed. So I sent her a message asking for more details. Got the number, made a phone call and last month (April) we were in to see her. I wasn't even sure if my son was a candidate, after all, the other Dr said their was nothing else we could do. WOW--I'm so glad we went. This eye therapist/Dr, was amazing. She said that with focused work by our son, she said her goals for him were to fix his lazy eye and stregthen his eyesight from -6 to at least -2 if not close to being out of glasses. SAY WHAT??? Is this possible? She even said that any patching after 2 hours doesn't do anything but encourage that weak eye to work independently. And in my son's case, they just want to strengthen it, but also have it work correctly with the stronger eye. She said their are a ton of case studies that prove this point--patching is only effective for 2 hours. We were given many different exercises to do with the eye, coordination, 3D movies, etc. And just this past Monday, we went back for the one month check-up and guess what? He can see in 3D and his depth perception has gotten slightly better. We are putting him into contacts, which she said would be beneficial for him playing sports, etc. I'm so glad my friend posted that on FB and that we did something else. We are still seeing the Ophthalmologist, but I'm not informing him on the therapy. I just want to see how well my son improves and get the reaction from the Ophthalmologist! I'm not sure where you are located, but I'm in IL. And from my understanding, there are only a few in our state, one which happens to be a 1/2 hour drive from us (lucky us)! But I'd be more than happy to give you her information and perhaps their office could help you find one near your location. Or, google search eye therapy. She also recommended reading a book: Fixing My Gaze by Susan Barry. You can also email me too, perhaps that is what I should have done instead of writing a mini-novel here! Best of luck to you and your decision. It's a tough one! Cindy @ crazylou (highkicks74atgmaildotcom)

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  10. So sorry to hear this. I don't know how you make a decision, so difficult. Your in my thoughts and prayers.

    Pia

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  11. Making a decision like this is hard for you and your family. Know that you made the right one based on real solid information. Take comfort in that. I'm so sorry to hear this.

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  12. Thanks for stopping by my blog and now following you on GFC and twitter. Wow what an amazing blog and this post is so heartfelt and I really feel for you, it's such
    a hard decision to make, especially when there are pro's and cons on both side and no one likes to see their child undergo surgery. I hope that you come to a decision that fits your family.

    Laura x

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  13. Oh, goodness! What a tough choice. I also take lots of time to make decisions and weigh all the options, but I've never had to make a choice like this. Best of luck and lots of hugs!
    Natashalh

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  14. Hey Elena,
    My son has a lazy eye... and it was scary when we first noticed it. We were told he may need surgery as well. At the age of two he started to wear prescription glasses to correct his vision, to make his right eye stronger. We patch his eye everyday for 2 hours, and I have to say his last appointment went well. We will see the Dr. again next month to see if the patching has corrected his eye. His measurement improved last time we were there, so hopefully we get good news. I'm hoping we can get rid of the patching because-- school starts this fall for him : /
    I make sure he uses his patch for: reading, iPad time, or even lego building.
    I saw something on the news that I haven't had a chance to ask my son's dr. about but will when we see him. I thought I'd share it with you
    http://www.nbcnews.com/video/nightly-news/51667816
    wish you the best.
    xo
    Adina

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  15. I'm not a mom but lots of love to your family right now as you figure out what's best for her. <3

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  16. Honestly I have no clue what I would do.I would like to say if it came down to it, I would do the surgery. Sounds like that is becoming the position you're in. Hang in there lady!
    Xoxo

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  17. Hi
    Nice post. Most of the times i never spend a most of the time on any posts. But i really like you post and i read your post. Thank you for sharing and keep posting a more post on new topics

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