Post Surgery Update

3 days post surgery

10 days post surgery

 

Lane had a second surgery on March 28, 2013 (4.5 years old). The method was the frontalis sling using fascia lata. As can be seen from the photos above, the surgery is being deemed successful at raising the lid so his vision is no longer obscured. In terms of the surgery itself, he was given general anesthesia and a local block to numb the area of the leg from which the fascia was harvested. The whole procedure took ~4 hours. When we got to him in the recovery area, he was still asleep. He slowly awoke, and wasn't too ornery as he came to awareness. His left eye was covered with a large bandage, as we knew it would be until the following day. His leg was sutured with a bandage as well. We stayed in the hospital an additional 1.5 hours, while he had some juice, goldfish, and popsicles. That night he was tired, but did not complain of any pain or discomfort. We carried him around due to the numbness and stiffness of his leg. We did give him Tylenol that night, and again the next morning, but nothing thereafter and he never had any pain whatsoever. The next morning we went back to the hospital to have the bandage over his eye removed. Upon removal, he was swollen, but not too badly, and had no bruising. We could not tell immediately if his lid was indeed raised due to the stitches (3 incision points over his brow) and swelling, but the doctor assured us that his looked as it should post-surgery and it should have a positive outcome in due time. They conducted a vision test on both eyes and his left eye's vision was equal to that of his right eye. We were given a topical antibiotic to place on his incision points and eye lids for the next ~10 days. Basically, we were told to wait and watch, and that it would take as long as 30 days to see the final result. That day, one day after surgery, his leg was still stiff so he limped a bit, but overall played and acted normally. His eye does not close completely when he is sleeping, but this has not been problematic in any way. He doesn't even notice. The stitches in his eye and leg are self-dissolving. We are now at 3 weeks post surgery, and the stitches in his eye have dissolved/fell out, and he has only one small scab left above his eye. The stitches in his leg are still present, and the tape covering them is just starting to fall off. In summary, so far so good! We are thankful!

 



Post Surgery Update

Lane had surgery on Feb. 7 due to his eyelid drooping again since his original surgery in 2009. The plan for the surgery was to try to tighten the knot on the existing silicone rod (frontalis sling) to pull-up the eyelid again so it was not impairing his vision and would hopefully hold-up for a year(s) to come. In the operating room, the surgeon was able to quickly locate the rod, tighten the knot, and indeed Lane's eyelid raised in the operating room. After the surgery, we were told the surgery was successful, easy, and minimally invasive.  Lane came out of surgery with a huge bandage over that eye and underneath the bandage his lid was sutured closed. We were so relieved the surger way over, and Lane was doing fantastic. The next day we went to his post-op appointment to have his bandage and the suture removed. Upon removal, my  husband and I could immediately see that his eyelid was not at all raised, but in fact, drooping to an almost closed state. We knew immediately that something went wrong. My heart and my stomach dropped. Two doctors examined him and communicated to us that the rod must have snapped under tension after the tightening procedure, and that he would need another frontalis sling surgery with fascia lata as soon as it could be scheduled. We were devastated for a day or so, but now we realize that we are lucky our son doesn't have anything life threatening, he can endure another surgery, and the frontalis sling with fascia should be successful (we pray). So, another surgery for us on March 28! In the meantime we are patching his good eye for one hour a day to keep the other working (for at least an hour a day).  Attached is a photo of Lane 4 days post-surgery. 

Getting ready for surgery again

We visited Lane's eye doctor/surgeon on December 26, had his vision checked (which is perfect) and scheduled his next surgery. The main objective of this next surgery is to lift his lid again with the hope it will carry him over for ~two years (but who knows). The surgery is scheduled for Feb. 7. During the surgery, the plan is for his surgeon to first try to tighten the current rod/sling that is there which should thereby raise his lid (we are hoping for 2mm). This option will be minimally invasive, but has a less certain positive end result. If he is unable to tighten the current structure due to tissue and such that has developed around the rod, then he will remove the current sling from his brow,  take Lane's own fascia from his thigh, and replace the sling in his brow with Lane's own fascia. This will be a more involved procedure, but could have a more certain positive result and possibly and longer effect of holding the lid up.Unfortunately, nothing is certain in terms of how good the end result will look or how long it will last, but we have had excellent luck so far so we are optimistic. Will let you know how it goes after Feb. 7!

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.