Pto... wait, what?

Ptosis

Ptosis is also called "drooping eyelid." It is caused by weakness of the muscle responsible for raising the eyelid, damage to the nerves that control those muscles, or looseness of the skin of the upper eyelids.

Causes

Drooping eyelid can be caused by the normal aging process, a congenital abnormality (present before birth), or the result of an injury or disease.

Symptoms

• Drooping of one or both eyelids
• Increased tearing
• If ptosis is severe, interference with vision.

Treatment

If an underlying disease is found, the treatment will be specific to that disease. Most cases of ptosis are associated with aging and there is no disease involved.

Surgery can be done to improve the appearance of the eyelids in milder cases if the patient wants it. In more severe cases, surgery may be necessary to correct interference with vision. In children with ptosis, surgery may be necessary to prevent amblyopia.

(http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002013/)

Ptosis ... I have it, and Aaron has it.

You can see it plainly in the pictures from when I was born. I was unable to open my eye and the doctors were worried that because I couldn't see out of that eye that my brain would stop sending signals to it all together and I'd go blind in that eye.

So they did 3 surgeries to try to correct it. They roped my eyelid to my eyebrow. At first they just did it to my right eye - the one that was worse but eventually they did it to both to try and normalize how I looked.

See - not too bad... Though as I've gotten older it's started to droop more again and I get headaches because the way I hold open my eyes is by lifting my eyebrows... It gives me wrinkles as though I am old... but I am definitely grateful that I can see. We looked into the headache thing for a while and learned that the surgeons (this was a few years ago, I don't know about now) still use the same procedure that they developed in 1901 (talk about an old procedure!)... there is simply no research being done in this field, or if there is, it is minimal. I was also told that they could try and fix the droop but the way they would do this is by tightening the fascia that they used for the connection which would pull my eyelids further off my eyeballs and my eyes would dry out and I'd still go blind... great.


Aaron clearly had it when he was born -------> (p.s. the red hair you see in this picture is gone... it's blond now :} )

We took Aaron to see a doctor back in September. It took us 2 months to get in. Once we had the visit the doctor told us that there wasn't any immediate danger. He wanted to wait to see if astigmatism would manifest. Once it did, then he would operate. (as a corrective procedure not preventative... and there was no guarantee that his astigmatism would go away after the surgery)

That didn't sit well with me but he's the doctor, not me, right?

Well, a month went by and I was still bothered by what the doctor said. I kept a close eye on Aaron and I felt like his eye was drooping even more. He also started lifting his head up to see rather than lifting his eyelids.

So I called the other eye doctor that Aaron's physician had suggested. We were in to see him less than a week later. He took one look at Aaron and completely disagreed with the first doctor. He also said that while astigmatism can develop, it isn't common - the more common and serious problem was amblyopia or neurological blindness... where he stops communicating with that eye all together because his eyelid covers more than half of his iris and pupil. The doctor set us up with a surgeon whom we are meeting with next week. He will then have surgery a week or 2 after Thanksgiving. We don't know if the surgeon will operate on both eyes or just his left eye which is the worst (though both of them droop).

Because the doctor was so concerned that he would develop amblyopia, he sent us home with eye patches. He asked me to once a day for a few hours patch Aaron's right eye, forcing him to use his left eye. Aaron doesn't much like the patch but he's been a trooper so far. He fussed a bit when I first put it on and then decided it was too much work to hold his eye open and went to sleep... He woke up and was playing just fine though he every once in a while starts to whine - but who wouldn't! Not only does he have a patch on his eye, but he's still sore from his shots yesterday and he's got at least 2 teeth coming in...  Poor kid. When I took it off he had his eyes closed and once he opened them and realized that he could see with both eyes he alternated smiling and crying - my guess is he was crying cause he was so excited and happy.

Even though this is the scarier option (surgery) it definitely feels more right and I am more calm about this than I was about waiting for a problem to develop.

I can only hope that Aaron doesn't have the long lasting effects that I have had from the surgery (headaches and still droopy eyes) but if he does at least he will be able to see.

Our little family would appreciate any and all prayers on our behalf as we goes through all of this in the next month or so.