Our son was born in 2008 with congenital ptosis in his left eye. After his diagnosis, we found that there was not a lot of information available on this condition. We especially sought pre and post-surgery pictures of children with this condition so we knew what to expect for our son during his lifetime. For these reasons, we are writing this blog to share our story, post photos of our son's results, and correspond with others dealing with a similar situation.
After his birth, the left side of our son's face was swollen and his left eye did not fully open. The pediatrician attributed the swelling and eye problem to trauma during the birth, and advised that it should subside. (Ptosis can be caused by position in the womb or a genetic defect. We don't know for certain what caused our son's condition.) After approximately 10 days, we noticed the swelling decrease, but no improvement in his eyelid and we began research on the condition. We immediately scheduled a visit to a specialist because we were concerned about his vision in that eye. He was first seen by a pediatric opthamologist at a children's hospital at 15 days old. The doctor confirmed that he had congenital ptosis. The initial examination of his vision as a newborn concluded that his left eye was tracking with his right eye so it seemed he was using that eye to some degree. Our son was seen by this doctor, another pediatric opthamologist for a second opinion, and also a pediatric oocuplastic surgeon within his first six months of age. All the
doctors agreed that our son's ptosis was severe, and his levator muscle function was poor.
Doctor #1 recommended a frontalis sling procedure for our son due to his poor levator function and severe drooping, but was not willing to perform the procedure until our son was older; ideally 3 years old, when the doctor could use our son's own muscle tissue (fascia) in the procedure. In this procedure, the eyelid muscle would be suspended to the eyebrow muscle so that the eyebrow could then do the work of lifting and lowering the eyelid. The doctor would only perform the procedure sooner if he saw proof that our son's vision was poor enough to merit an earlier surgery.
Doctor #2 recommended a supermaximus levator resection and was willing to perform surgery almost immediately. In this procedure, the levator muscle is cut down in size (shortened), then reattached in order to hold the eyelid higher and decrease or eliminate the drooping.
Doctor #3 concurred with Doctor #1 and referred us back to him for his specialty and experience with the frontalis sling surgery.
After much debate and research, despite our anxiety to have his eyelid corrected as early as possible, we chose to take our son exclusively to Doctor #1 going forward.
For our son's first year he visited the doctor regularly. We brought pictures to each appointment which showed our son at different ages (3 months, 4 months, etc.) and at different times of the same day (morning, noon, night, etc.). Each visit they tested his vision in the ptosis eye (vision analysis is a somewhat subjective task in an infant who cannot be examined with traditional eye charts) and also examined his eyelid for any changes in droopiness and function. His ptosis eye always seemed weaker than his right eye, so we were instructed to patch hi's good eye for 1-2 hours each day to improve the vision in the ptosis eye. Just after our son's first birthday, the doctor determined that he felt it necessary to move forward with the surgery (to our relief!) sooner than later due to the severity of our son's droopiness and the apparent weakness in the vision of his left eye.
Frontalis sling surgery was scheduled when our son was 14 months old. In this procedure, the eyelid muscle is "slung"/attached to the eyebrow muscle so that the eyebrow can do the work of lifting and lowering the eyelid. A silicone rod would be used, as opposed to banked fascia, at the doctor's recommendation. As we understood it, the body accepts the banked fascia more readily due to its natural state, but the silicone provides a more long-term effect (assuming it is not rejected by the body) as it holds stronger for a longer period of time. We were told the surgery would take approximately 2 hours, that his eye would NOT close post-surgery (not even during sleep), and eye dryness was a great risk that we might encounter which could possibly require a second surgery. Our son's eye would be stitched closed after the surgery, and the doctor would remove the stitch the following day. We were to expect swelling for up to 6 weeks, and we would have to apply an antibiotic lubricant into the eye three times a day for approximately two weeks. The doctor advised that we would need to wait at least 6 weeks to see the final outcome of the surgery. With that, we prepared for surgery.
After his birth, the left side of our son's face was swollen and his left eye did not fully open. The pediatrician attributed the swelling and eye problem to trauma during the birth, and advised that it should subside. (Ptosis can be caused by position in the womb or a genetic defect. We don't know for certain what caused our son's condition.) After approximately 10 days, we noticed the swelling decrease, but no improvement in his eyelid and we began research on the condition. We immediately scheduled a visit to a specialist because we were concerned about his vision in that eye. He was first seen by a pediatric opthamologist at a children's hospital at 15 days old. The doctor confirmed that he had congenital ptosis. The initial examination of his vision as a newborn concluded that his left eye was tracking with his right eye so it seemed he was using that eye to some degree. Our son was seen by this doctor, another pediatric opthamologist for a second opinion, and also a pediatric oocuplastic surgeon within his first six months of age. All the
doctors agreed that our son's ptosis was severe, and his levator muscle function was poor.Doctor #1 recommended a frontalis sling procedure for our son due to his poor levator function and severe drooping, but was not willing to perform the procedure until our son was older; ideally 3 years old, when the doctor could use our son's own muscle tissue (fascia) in the procedure. In this procedure, the eyelid muscle would be suspended to the eyebrow muscle so that the eyebrow could then do the work of lifting and lowering the eyelid. The doctor would only perform the procedure sooner if he saw proof that our son's vision was poor enough to merit an earlier surgery.
Doctor #2 recommended a supermaximus levator resection and was willing to perform surgery almost immediately. In this procedure, the levator muscle is cut down in size (shortened), then reattached in order to hold the eyelid higher and decrease or eliminate the drooping.
Doctor #3 concurred with Doctor #1 and referred us back to him for his specialty and experience with the frontalis sling surgery.
After much debate and research, despite our anxiety to have his eyelid corrected as early as possible, we chose to take our son exclusively to Doctor #1 going forward.
For our son's first year he visited the doctor regularly. We brought pictures to each appointment which showed our son at different ages (3 months, 4 months, etc.) and at different times of the same day (morning, noon, night, etc.). Each visit they tested his vision in the ptosis eye (vision analysis is a somewhat subjective task in an infant who cannot be examined with traditional eye charts) and also examined his eyelid for any changes in droopiness and function. His ptosis eye always seemed weaker than his right eye, so we were instructed to patch hi's good eye for 1-2 hours each day to improve the vision in the ptosis eye. Just after our son's first birthday, the doctor determined that he felt it necessary to move forward with the surgery (to our relief!) sooner than later due to the severity of our son's droopiness and the apparent weakness in the vision of his left eye.
Frontalis sling surgery was scheduled when our son was 14 months old. In this procedure, the eyelid muscle is "slung"/attached to the eyebrow muscle so that the eyebrow can do the work of lifting and lowering the eyelid. A silicone rod would be used, as opposed to banked fascia, at the doctor's recommendation. As we understood it, the body accepts the banked fascia more readily due to its natural state, but the silicone provides a more long-term effect (assuming it is not rejected by the body) as it holds stronger for a longer period of time. We were told the surgery would take approximately 2 hours, that his eye would NOT close post-surgery (not even during sleep), and eye dryness was a great risk that we might encounter which could possibly require a second surgery. Our son's eye would be stitched closed after the surgery, and the doctor would remove the stitch the following day. We were to expect swelling for up to 6 weeks, and we would have to apply an antibiotic lubricant into the eye three times a day for approximately two weeks. The doctor advised that we would need to wait at least 6 weeks to see the final outcome of the surgery. With that, we prepared for surgery.
I was born with severe ptosis, through out my life i have had 4 surgeries, and my eye is still weak and lower than my left eye, my balance and depth perception is poor. Wish I can find a doctor who can help, I'm 32 years old and living in a society where looks mean a lot, life has been real tough to the point ive comtiplated committing suicide
ReplyDelete