August 5, 2012

My son visited his opthamologist in June (yes, it takes me awhile to post). He is was a few weeks shy of 4 years old (this is 2.8 years post-surgery) was dilated and his vision was thoroughly examined, and despite his quite droopy lid, his vision is perfect. The doctor informed us, assuming his vision remains stable, we could opt for surgery for aesthetic/social reasons only. If you recall, our son had frontalis sling surgery with a silicone rod at 14 mos. old. There are two approaches for the next surgery. The first option is to open the brow and attempt to tighten the existing silicone rod. The pro of this surgery is that it is minimally invasive. The con is that once the Dr. opens the brow, he may find that the rod is embedded in such a way that he is unable to tighten it. If he is able to tighten it, there is a possibility that there may be no visible improvement post-surgery. If the surgery is a success, there is not telling how long the results will last (i.e. lid may droop again sooner than later). The second option is to remove fascia from our son's leg, and replace the existing rod with his own fascia again using the frontalis sling method. The pro of this surgery is that there should be measured improvement to the lid post-surgery, and the results should be lasting. The cons are that the surgery is invasive as there are two surgical sites (leg & brow) and brow surgery is quite involved. With either surgery, there is no promise on how successful the lid lift will be, and how long the lift will remain.

My husband and I think we will move forward with surgery this winter so that by fall 2013, when our son starts kindergarten, he will have a better aesthetic and not need surgery for some or all of his grammar school years. We have not decided which surgical approach yet. I will keep you posted on our next steps.

At age 4, my son is aware that his eye is slightly different from others, but still doesn't seem bothered by it. My son, myself, and my husband occasionally get questions from other kids (sometimes adults) like..."what's wrong with his eye?" or "does his eye hurt?". I often get strangers commenting "someone looks tired!". But, other than that, life goes on as usual. My son plays sports, swims, runs, jumps with no interference from his lid at all.

Let me know if you have any questions/comments.

Post-Doctor Visit

My son had a check-up two weeks ago. The good news is that his vision is perfect. The not-so-good news is that the doctor felt his eyelid was "decomposing" (his words, not mine) thus drooping into his line of vision. The lid is just outside his axis of vision, but if it falls anymore, then it will begin to effect his vision. The doctor considered making us start patching his good eye again, but decided not to proceed with that (thank goodness). He told us to expect another surgery sooner than later. He wants to see our son again in 3 months to closely monitor any further decomposing of the lid. We see him again in May, and I'll provide an update then, if not before.

January 9, 2012

I haven't added photos in quite awhile. So included are some recent photos of our son 2 years 4 months post-surgery. He had surgery at 14 months old and is now almost 3.5 years old. We think his eyesight is normal, and we feel his eyelid is slightly droopier than right after surgery (but it is hard to tell). He has a check-up in February and I will post after the appointment to let you know the findings. Now that he is 3.5 years old, I have begun to tell him to "please open your eye" when it is really drooping and sometimes he does intentionally open it more. So, if we are taking pictures, I do try to get him to open his left eye. His specialist did say that as he got older and was more aware of the drooping eye, that he should be able to make an effort to open it to better match the other eye. We'll see if he starts to do that more over time. He doesn't yet realize that his eyes are any different than anybody elses. We will see what age that occurs. I dread the day he notices, and just hope his personality and spirit don't let it get him down.

Sensitivity of the Ptosis Eye

The ptosis eyelid doesn't have the ability to protect the eye as well as the good eyelid can protect its eye due to the lesser functioning eyelid. For example, in cold or wind, the ptosis eye tends to water more easily. In bright sunlight, the ptosis eye will squint itself shut. We've had incidences of sunscreen getting into the ptosis eye resulting in severe swelling so we only use the stick sunscreens that cannot run. We try to encourage our son to wear sunglasses often so that he doesn't have to constantly squint that eye shut when out in sunlight. In most pictures taken outdoors, his ptosis eye is completely shut. And, of course, there are days in which his ptosis eye seems to be more droopy than other days; whether this is tiredness or something other. But, for the most part, his eye looks and functions great. And we couldn't be happier.

Photos 12+ months after frontalis sling surgery

Months & now years post-surgery, when our son is looking straight forward (primary gaze) his ptosis eye is almost symmetrical to his "good" eye. However, if he is looking up or down, then his ptosis lid is measurably low or high, thus, different from the good eye. The doctor told us this would be the case going into surgery. When he is really tired, the ptosis eye will severely droop or close altogether, simply because he is not making the effort to lift it. The doctor feels that as he gets older, he will be more cognizant of how his eye looks so he will likely make a more conscientious effort to lift his lid and make it more symmetrical to the other eye. I am attaching pictures of his lid in different positions so you can see what I am trying to describe.

Update on our son's ptsosis: now 3 years old

It has been a long time since I've updated the information on our son's ptosis. He just turned 3 years old. We recently had his eye checked and his vision is now perfect. It took several months for the vision in his ptosis eye to catch-up to his normal following surgery. Supposedly, in 90% of ptosis cases, the ptosis eye catches up right away (within weeks), however, this did not occur with our son. We patched his good eye for a good 6 months following his surgery then eventually his ptosis eye caught up. At 3 years old, they were finally able to do a comprehensive eye exam with him since he could actually read the eye charts now and recite the pictures and his vision was perfect for his age. In terms of his lid itself, the doctor feels that it may be slightly more droopy then when his surgery first occurred, but nothing of any significance. There is no telling whether he will need additional surgery. He will be seen regularly; each time his vision is checked and his lid is measured until if and when we need to take further action. At each visit we bring recent pictures of our son, and this is very helpful for the doctor to see him on different days, his eye at different times of the day (morning, noon, night) and in different environments.

January 5, 2010

Photo taken 2 months after surgery.








My son visited the doctor on November 14. The surgery was a success, and he looks great. The vision in his ptosis eye is significantly weaker than the vision in his other eye. Our understanding is that in about 90% of cases, the ptosis eye catches up to the other eye for equal vision. Our son's has not. We were instructed to patch his good eye for 1-2 hours everyday in order to strengthen the ptosis eye, then revisit the doctor in February. Well, we are unable to keep the patch on our son. He hates it and tears it off almost immediately. The doctor had recommended that we put arm restraints on him while he wears the patch in order to prevent him from taking the patch off, but we are not comfortable using arm restraints. As such, we left a message with the doctor today notifying him that we are not having success with the patching, and asking for advice and next steps. We're waiting to hear back from the doctor.