Thursday, February 7, 2008

Our journey with congenital ptosis...

Aidan was born with congenital ptosis, which caused us to seek medical advice, prayers and more informal information as soon as we found out it would be a problem. But as we researched, we couldn't find much information, even on the web, so we thought we would blog a bit about our experience with it - in hopes of helping someone else. :)

Congenital ptosis simply means a droopy eyelid, usually present at birth. The pediatrician thought it might have been due to the way he was positioned in the womb and that the droopiness would correct itself. But unforunately, it did not. So, we started consulting with a pediatric ophthalmologist, who recommended that we start patching his good eye at 3 months to prevent lazy eye and to help his brain develop connections to his "little eye". So, this poor kid was patched several hours a day almost every day started at 3 month til about a week ago. The patching was helpful and there was normal development of the "little eye" but his vision wasn't 20/20. The ophthalmologist started to be concerned about his vision and recommended surgery as soon as possible.

We then searched for a pediatric ophthalmologist who still performed ptosis surgery (ours didn't) and found one that came highly recommended and was in our insurance network. This surgeon recommended a levator resection, which basically means to shorten the eyelid muscle (the levator) by removing a section of the muscle so the lid would open higher. This surgery was completed shortly before Aidan turned one. Unfortunately, this did not raise the lid high enough and we had to continue with the patching and close monitoring by the other ophthalmologist.

After Aidan turned 2, the ophthalmologist was more concerned about Aidan's eyesight after diagnosing him with astigmatism, which she feels was caused by the increased pressure of the lid on the eye. She then recommended a 2nd operation. We had wanted to put off any further surgery because after a certain age, this type of operation can be done using local anesthesia vs. general anesthesia. But as we continued to watch Aidan have more difficulty seeing things (having to lift his chin to help him see or look to the side for more clarity), we decided to go ahead with another surgery, sooner rather than later.

By the time we decided on another surgery, we had already moved down to FL and we really questioned if we would be able to find a great surgeon, since we heard most of the eye specialists were concentrated in the Northeast. However, we finally found a surgeon who did fellowships in Ophthalmology, Pediatrics, and Plastics - making him the perfect candidate to be the surgeon for our son - Dr. Steven Gross in Palm Harbor, FL! Praise the Lord!! AND, he was also in-network. We felt so relieved! Anyhow, last Wednesday was the date of the 2nd surgery and it went really well. This time around, Aidan had the frontalis transposition done. This procedure basically takes the eyelid muscle and attaches it to his eye brow muscle so that he can lift the eyelid with his brow more effectively, while still allowing him to close his eyes when he wants to. [Another resection might have lifted his lid more but might have prevented him from closing his eyes, thereby causing dry eye issues.] He recovered quickly the day of the surgery - yay! [Getting a new train from the Thomas the Tank brand also helped.] The hardest part was preventing him from his usual antics (playing with this head on the ground, rolling around, etc) and not taking him to the playground (so he wouldn't get dirt in his incision). We've also had to patch his eye during naps and nighttime sleep to prevent him from touch the incision area. But Aidan was a real trooper - I'm so proud of him! :) We didn't take any pics the day of but took some Post-op Day #3 when we finally took him out of the house - you can see pic here. We're now praying for a quick and complete healing!

And as you can see, there aren't a whole lot of articles for parents of kids with ptosis that we could find. A lot of articles were comparing procedures or describing them but most of them were written using medical jargon. We hope reading our experience was helpful for someone else. If you need more info, feel free to email me - mama4jc@gmail.com! :)

***UPDATED POST HERE. :)

103 comments:

cora said...

hi jacklyn

my son born with ptosis his right eye.

how is your son doing after the operation?
i am glad i found in the webb

thank you

kevnjacks said...

Hi Cora - glad you left a comment! My son is doing great post-op! THe surgeon did such a great job that people who didn't know him prior to the surgery can barely tell that he had surgery - his eyes are very symmetrical now. Yay! We still patch about an hour a day to prevent lazy eye. If you need more info - feel free to email me! Best to you & God bless!

Yen said...

Hi,

We have a daugther with ptosis of the right eye. She was born in the US but now we are staying in Singapore.

She just underwent levator resection in early May. However, after 2 weeks, the eyelid is ptotic again. If fact, the eye opening looks narrower than before. Hopefully, it is because of the post-op swelling (it is already 5 weeks and there is still some slight swelling - how long did it take for Aidan's swelling to go away after the first surgery?). Do you have any idea why the first operation was not successful in lifting the eyelid?

Anyway, we were told to wait for a while before going for another surgery - either another levator resection or frontalis sling. However, we have not heard about "frontalis transposition" as an option. Is it different from frontalis sling, which uses either fascia lata or silicone sling material to help the eyebrow muscle lift up the ptotic eyelid?

We hope Aidan is doing fine and God Bless!

kevnjacks said...

Hi there - Thanks for your comment! I honestly don't remember how long it took for the swelling to go away after A's resection but I remember telling myself to give it about 2 months before I would talk to the Dr about it. A's current Dr felt that the resection was not successful because he has little to no levator function, so to raise the lid up high enough would cause dry eye issues, causing the previous surgeon to go more conservative as to the resected amt. I believe the frontalis transposition is very similar to the sling in that something else is holding the eyelid to the brow muscle but I'm not sure what the main difference is. Something about where it's attached and the placement? It's a fairly new procedure and the current surgeon had only done 15 previously, which is quite a lot for how new it is. Plus, he's a plastics guy, too. Anyhow, feel free to email me with any other questions! And, yes, Aidan is doing superb. I should write a blog update on him. :)

Yen said...

Hi,

Thanks for your reply and the info. It is hard to find people whom we can talk to and had/are going through similar experiences.

We are not sure how to e-mail you directly. Our e-mail is yhtong@gmail.com. Thank you!

kevnjacks said...

Just emailed you, "Yen"! :)

Cindy said...

Hi,

Thank you for your blog! We're happy to hear that Aiden is doing so well!

Our 3 year old son has severe ptosis in his right eye. We've been given the option of doing a levator resection, but were told that most likely he would still need a frontalis sling. We've been warned, however, of the cosmetic imperfections of the sling, particularly on downgaze. Until your blog, we had never heard of the frontalis transposition. We'd love to get more information on this procedure.

Why was this procedure recommended to you over the sling? Was it because it's a better procedure in general, or because it was more appropriate to your son's condition? Does this procedure have the same cosmetic imperfections as the sling?

If it's easier to respond via email, ours is vvwcm@yahoo.com. Thanks so much!

Cindy

kevnjacks said...

Hi Cindy - I'll be emailing you soon! :)

Anonymous said...

Hello,

It is great to hear how good Aidan is doing.
I, like other commenters, have a daugther with congenital ptosis of the right eye. She just underwent levator resection in June 17th. I know it's only been 5 weeks, but it looks as the eyelid is drooping again. Do you know if this is just a part of the healing process? Do you recall how long it took for you to recognize the surgery was not a success? Thanks for your blog! John G.

kevnjacks said...

Hi John: Thanks for commenting on my entry! Well, we gave it 2 months before assessing whether or not the resection helped - but there was a point where the swelling made it look as if the eyelid was droopier than before, which made us really concerned. But after the swelling had gone down entirely (we waited 2 months), the eyelid was back to the way it was. Hope this helps! Feel free to email me at mama4jc@gmail.com if you have any other questions or want someone to bounce ideas off of. God bless!
PS It seems like all the kiddies had ptosis of the right eye - curious!

Anonymous said...

Hi Jackelyn,Cora, Yen and others

My son is 15. He had severe congenital ptosis both eyes. More on the left eye. He went for surgery at age 5 in Singapore National Eye Centre (SGH).However, he still has severe ptosis in his left eye. The doctor doesnt want to do second suregery for the risk of dry eyes. Its effecting him mentally. We want a second opinion from another specialist. Can anyone recommend please? We pray adrian gets well soon.

Yen said...

Hi "Anonymous",

I am also in Singapore. Please send me an e-mail (using the address I have in a previous entry) and we can communicate better.

kevnjacks said...

Hi Anynoymous - feel free to email me at mama4jc@gmail.com. :) And I'm sure Yen would be a great resource! Aidan and I appreciate your prayers!
~Jacklyn

Carlie said...

Hi Jacklyn,

I have a 8mth old son who has ptosis. I'd greatly appreciate emailing with you directly, you are the first person I've been able to find who also has this experience who I can correspond with.

How can I contact you directly.

Many thanks for posting this blog, and sharing Aiden's story.

kevnjacks said...

Hi Carlie: Thanks for writing! You can email me at mama4jc@gmail.com - hope to hear from you soon! :)

Tiffany said...
This comment has been removed by a blog administrator.
Anonymous said...

Our daughter is only 3 weeks old and they have diagnosed her, what steps should we take? I feel s overwhelmed with questions. We are seeing a surgeon tomorrow..how are things going now with your son?

kevnjacks said...

Hi Anonymous: Thanks so much for leaving a comment on my blog! Feel free to email me at mama4jc@gmail.com to bounce any ideas you have off of me. :) Things are going really well with my son currently. Thanks so much for asking! Looking forward to hearing from you.

Anonymous said...

Hi Kevin,
I felt compelled to write to see how Aiden was doing. I was born with congenital ptosis (am currently 34) in both eyes and also had surgery in both eyes twice. Once when I was very little (which wasn't that successful because at the time a synthetic material was used to create the sling) and the second time around the procedure had advanced to taking a bit of my own muscle out of my own leg. Anyways, I can't really close my eyes and so I sleep with my eyes open so I thought I'd write just in case this is the same with Aiden. I was going to email you at first, but thought I'd just post it in case anyone else finds this helpful. I find that my eyes often get irritated from being open so much so my eye dr recommended taking a wet washcloth and putting it in the microwave for a few seconds so that it's tolerably hot, not too hot and putting it over my eyes as a compress to kill any germs. Also I have a humidifier to help keep the air most. Still on the hunt for great eye drops, in the middle of testing a brand out at the moment.

C

kevnjacks said...

Hi C: Thanks so much for writing - we really appreciate it! Aidan is actually doing well with the surgery and his eye is not that exposed when his lid is closed, so no dry eye issues here. And we do praise the Lord for that! We hope that you find great drops and that the dry eye issues will eventually resolve for you! Thanks, again, for commenting! :)

what? said...

hello,
My name is Ivan. I have congenital ptosis since I was born. Now I am 44 and Doctor recommended to have surgery because it becomes more severe. I have been forcing my eyes to open now that causes tiredness. I cannot read more than 1 hour without taking a break to close my eyes.

My question is that I am about to have a surgery here in US, Kaiser. Besides dry eyes, what other things that can go wrong? I am just wondering what the chance is to get a unsuccessful surgery. Do you have any good Doctor in US, California, Bay-Area that have an experience dealing with this ptosis? Am I able to open my eyes and do normal activities after 3 days of operation?

I greatly appreciate your comment.

Thanks
Ivan

kevnjacks said...
This comment has been removed by the author.
kevnjacks said...

Hi Ivan: Thanks for your comment. So glad to hear that you have a chance of getting surgery to help you with your ptosis. I am not familiar with any doctors in CA - only the ones in FL and NJ that we've used with Aidan. Sorry about that! Do you mind me asking what kind of surgery will you be undergoing? Do you have ptosis in both eyes? How fast you can recover and the rate of success varies with each procedure, so it would be best to find that out first. Your surgeon will also be able to give you the best and most updated answers for those questions as well. In Aidan's case, he was able to open his eye right away, though the swelling closed his eye for a day or two after the surgery. Feel free to email me: mama4jc@gmail.com. We'll see praying for you tonight! :)

marin said...

Hi,

Thank you for having this blog! My name is Virginia and my 10 months old son has ptosis in both eyes. We already saw two plastic surgeons that gave us completely different recommendations: first one advised us to wait until 3 years of age as long as vision development is not affected, while the second one wanted to do sling surgery as soon as possible saying that left eyelid is covering pupil which would eventually lead to visual impairment and patching would not work (since levator muscle function is poor and my son would not be able to lift his eyelid by himself). With that said, I have two questions for you? Did they use general anesthesia for Aidan's surgery? If so did you notice any side/post-surgery effects? Also you have mentioned that you are familiar with eye specialists in NJ? I am out there looking for a third opinion and I would greatly appreciate it if you can recommend an eye specialist/plastic surgeon in NJ? Thank you in advance!

kevnjacks said...

Hi Virginia - Thanks so much for you comment and I'm so glad our blog was of help to you! Would you mind emailing me your email address, so I can answer your questions without running out of space in the comments section. Thanks! Looking forward to hearing from you! :)

kevnjacks said...

Virginia - BTW, my email address is mama4jc@gmail.com, as above. Thanks! :)

Meenu said...

Hi, Thanks so much for the blog.My little niece Aanya, back in India has ptosis in left eye since birth.We knew she needed surgery from birth but doc asked us to wait in case it corrects itself.Now she is 1.5 year old and its still there.Was it hard for Aiden to cope up with recovery being so young? We are worried about her vision getting affected due to ptosis on one hand bt also concerned about her being so little for surgery.

kevnjacks said...

Hi "Meenu": Thanks for your comment! To answer your question, Aidan did really well with the recovering w/ both his surgeries - first at age 1 and the second at age 3. His ptosis was severe enough that it was definitely affecting his vision and even now, he has to wear glasses because the ophthalmologist think that the weight of the lid on his affected eye during those yrs might have contributed to the astigmatism that blurs his vision. Feel free to email me w/ any other questions. :) Mama4jc@gmail.com is the address. Thanks and God bless!

Anonymous said...

I too have this problem, my age is 25, I already have once surgery or both eyes. One eye is ok but other eye's lid is down agian.
Who are good doctors in singapore for ptosis.
Please do answer.

K Deepak

kevnjacks said...

Hi K - Thanks for writing! Feel free to email me at mama4jc@gmail.com and I can hopefully put you in touch w/ someone that knows about MDs in Singapore! :) Thanks!

Ursula Dougherty said...

Hi jacklyn, I have a 3 year-old, Isabella, that was born with congenital ptosis. I understand what you went through and I am so unbelievably thankful I found this blog. We live in Tallahassee, fl and went to St. Petersburg to see this great doctor. It was dissapointing since even though he was a great doctor, he did not have much experience with the frontalis transposition surgery and his rate of success was very low. I came back discouraged and today I went back to the search and found you. Can you tell me who did the surgery on your son since it sounds like he did a great job? Thank you so much!

kevnjacks said...

Hi Ursula: We went to Dr. Steven Gross in Palm Harbor - hopefully he might be able to help! The procedure is rather new, however, so I'm not sure of the success rate. Hope this helps!

Anonymous said...

I am female 25 yrs old in southern california, I am having surgery for my congential ptosis on my left eye on September 29th, 2010 with kaiser. I will let you know how the results come out :)

kevnjacks said...

Hi "25 y.o. in CA": Yay - hope to hear about the great results! :)

Anonymous said...

My surgery is tomorrow morning! ahhhhh at kaiser in ontario ca, will post back with results

Ashley A said...

my daughter who is now 11 months old was born with congenital ptosis (possibly related to incontinentia pigmenti, we are still waiting on lab work to confirm) she had both eyes repaired 9-10-10 using a frontalis sling with a material called ptos-up, her opthalmologist says it is relatively new. However her left eye has begun to droop again. I'm wondering how many others have had drooping after surgery and what was done. She has a followup in about a week and we will discuss then. I am terrified she will need the surgery repeated in the left eye. On an up note she tolerated the procedure extremely well. She was ready to play when we got to see her in the recovery room, she a trooper. Thank you for having this blog it makes a difference to know others are experiencing similar situations. -Ashley A.

andrea said...

Hi,
My son is 16 weeks old with congential ptsosis in his right eye and we just went to the Opthamologist yesterday for the 3rd time. At the 2nd visit he said he wanted to do surgery around Dec or Jan depending on the size of my son. Now he says he wants to do surgery at the end of Feb. My son weighs 15.7lbs, not a small baby. Anyways, it is so hard to find any info on this condition. If surgery is done at the end of Feb, my son will be 7mths old. Just wondering if this is a good age. It seems everything I find online says surgery is done around 1 yr old. We are patching his eye for half the time he is awake during the day. Usually, I just put the patch on around 9:30am and take it off at 5:30pm since he takes nap on and off throughout the day(doing this to lessen the pulling off the patch on his skin all the time). Do you have any good suggestions for me? I feel so lost. We live in Southern CA. Not sure if I am real impressed with our current doctor. Thanks!!

kevnjacks said...

Ashley A - Thanks so much for leaving a comment on our blog! How did the followup visit go? Did the drooping stop at some point? Feel free to email me at mama4jc@gmail.com. God bless!


Andrea - Thanks for writing! From what I've heard and seen myself, most MDs like to do the operation around 1 yr because their face size changes so much within that one yr. Most would like to wait til that change slows down a bit so the first surgery would not have to be redone because of growth. But maybe your MD has different reasons? Maybe the ptosis is really obstructing his vision and he is concern about eye development? Also, the most we've done patching is for 4 hours at a time and we did it mainly in the morning, as he doesn't have the patch on for too long. Our son had sensitive skin and does not tolerate having the patch there for too much longer than that. Anyhow, feel free to email me at mama4jc@gmail.com and we can dialogue some more! God bless!

Anonymous said...

Its so great to find at least one blog post with so many caring parents trying to find the best help for their children with this condition.

I have ptosis of one eye and retraction of the other, as a 33 year old. Had it for whole life but it progressed to worse with time. I have been looking for a while to find info and share stories.

In any case, I just wanted to comment to Andrea's comment. If you do not feel comfortable with your doctor, do NOT do the surgery with them. I had a bad surgery experience. Its a long story. But surgery went as well as it can, but the shear dismissive attitude of surgeon post op was shocking. Again, long story, but find someone who seems like they have (1) empathy (2) time to be diligent (if there is 20 people in waiting room they might be good, but they will not have time to comfort you and do other bedside manner stuff that are critical)

Anyway, best of luck. I can be emailed at account I set up just for these issues : ptosisguy at gmail.com

KEVNJACKS, thank you so much for this blog post. I'm sure it really, really helps people to know they are not alone. I wish blogs were around when I was growing up and trying to deal with this issue!

priti shah said...

Hi My son Ishaan has congenital ptosis since birth. I have seeked 3 Doctors opinions and all there varied. WE do his vision test every 4 months and so far his vision is perfect in both the eyes.Hes 15 months old now.However one doctor insisted on eye patching atleast 2 hours a day and the other two said that by patching his correct eye i would be damaging his vision and i should stop patching.Dont know what to do in this situation..Any suggestions or experience would be helpful.
thank you
priti

kevnjacks said...

Hi Priti: Thanks for writing! I'm not quite sure what you would need to do re: the patching since I'm not a physicians but I can tell you about our experience. With all the MDs that we've seen, all of them have recommended patching, esp during the period of vision development. I believe that it really helped A to not have any lazy eye problems and currently, his vision is great in the affected eye, with some astigmatism aside. Maybe you can ask how many hours you can patch before it becomes detrimental? Anyhow, I hope this helps!

Anonymous said...

I would love to ask you some questions about the type of surgery your son had. We are waiting to get a 2nd opinion but I'm full of questions! Could you shoot me an e-mail so I could ask a few things?
Thanks, Kristen

kdavis12@gmail.com

Jpugs8543 said...

Hi,

Thank you so much for your blog!!
Our son is 11 months old and also has congenital ptosis. He will be having the same surgery-frontalis transposition in March. We have our last appt tomorrow before the surgery in March. This may help others out with the patching-the advice we have been given is to tape the eye lid "up" instead of patching it... ALthough i didn't know that others were patching the good eye; our dr advised to tape the eye lid up so that the eye development continues until the surgery. So far, this method has worked great and we have not had any problems with our sons eye vision-thank the lord! But, I will ask our dr tomorrow why we were not told about the patching method and whats the benefits of doing 1 v. the other. How is A doing? I know you said he can shut his eyelid somewhat-but that it remains slightly open at night. How he is hadnling 1 eyelid being slightly open while the other is still closed when sleeping? I am really worried about our son not being able to close his eyelid after the surgery... Did they tell you before the surgery that it was 100% that the eyelid would not close-or that it was a risk?

Thank you again for posting this! Your blog has really helped me and others!! Kay

kevnjacks said...

Hi Kay: Thanks for commenting on our post! So glad to hear that your son's vision has been great so far! And so glad that you found a surgeon to do the transposition! Do you mind me asking who your surgeon is? I'd love to compile a list of surgeon who do this procedure? Please email me at mama4jc@gmail.com. Also, I've not heard of taping the eye open - would love to hear more about that? Does he experience any dry eye symtpoms since he probably can't blink the eye that's taped open? And A is doing well - thanks for asking! His eye is only very slightly open during sleep and has not been a problem and we were told before the surgery that most will not be able to close their eye fully when asleep and some might have dry eye issues . Hope to hear from you soon! :)

Ria Brabham said...
This comment has been removed by the author.
Anonymous said...

Hi
My name is Ivan, 44 year old with congenital ptosis. I realize that my left eye keeps dropping and concerns me. I met a doctor who recommended me to have a surgery. I had one but failed. Now they recommend the second one using a sling--either it is made of silicon or artificial muscle. I have not done yet. I am very nervous about the outcome.

I came across this blog.
please provide me some insights. It would greatly help me. BTW, I am with Kaiser. If you know best surgeon at Kaiser to perform this type surgery, I appreciate if you can share the info with me.

I appreciate your time and God bless
Ivan (ivan.sutanto@gmail.com)

kevnjacks said...

Hi Ivan: Thanks for your comment! I will be writing you at the email address provided! :)

Nancy said...

hello, my name is nancy and i just sent u an email a few hours ago, but just in case u didn't see it, i will post here too. my son who is 4 1/2 months old has congenital ptosis. his ped. optho. wants to do a frontalis sling surgery on him wen he is 6 months old. with the procedure that was done on your son, i was curious what it entailed. for the frontalis sling our doctor said he would put in a processed tendon and make five small incisions. also did the doctor check your sons eye each time to see if his vision was developing okay in the eye that had the ptosis .

thank u again for ur blog and taking the time to share ur story and answer questions.

sincerely,

nancy

kevnjacks said...

Hi Nancy: Got your email! Emailing you back! :)

KG said...

So glad to see your blog. My daugher (now 14) was born with severe bilateral congenital ptosis. We are fortunate enough to live right down the road from CHOP in Philadelphia. She had a double sling procedure done when she was 8 months old, using donated tissue. Only one eye was successful and she had the other re-done when 8 months after that. It worked wonderfully and lasted until just this year, when some discrepancy and drooping occurred. We were warned to expect that. Just had both eyes re-done with a sling procedure using her own tendon (now that she is old enough). She is gorgeous. After looking at her for awhile, a person might --- or might not --- wonder if there was something just a little bit "exotic" about her. Nothing you can put your finger on, just something a wee bit different around the eyes. Adds to her mystique. We are grateful to have had access to such a great organization. If you are ANYWHERE near Philadelphia, I recommend you make contact with them.

kevnjacks said...

Hi KG - Thanks for your comment! So glad to hear good things about CHOP! What physician did her surgery, may I ask? Your comment will be a good resource for others who are in the Philly area! Thanks, again! :)

KG said...

Dr. William Katowitz did the surgery this time. When she was an infant, it was done by Dr. Katrinka Hehr (sp?), who is now in Boston. Can't say enough good things about them.

Jacob said...

Hi our 7yr old daughter was born with moderate ptosis in both eyes. Her vision hasn't really been affected but she had a hard time looking up and we wanted a better quality of life for her. We went with the doctor's recommendation and did the frontalis sling operation in both eyes just 2 days ago. Her eyes are very wide open right now, it's disconcerting. She can't close them all the way and it is scaring her and she's a bit depressed. The doctor warned us about this and we hope she'll be able to close them normally once she heals some more and adjusts.

kevnjacks said...

Hi Jacob: Thanks for writing and sharing about your daughter! Since your daughter is only 2 days out, hopefully the eyelid will come down some and normalize a bit. Also, I've heard that the frontalis sling is one of the easier procedures to correct, or so I've heard. We'll be praying for her! :)

comeover said...

Hi, my name is Nicole and my son has minor ptosis in his left eye. He was diagnosed at birth and is now 13 months old. He has seen the pediatric optomologist 2 times since birth. We were told that his vision is great. When asked about surgery to correct the eye, we were told that it will be cosmetic surgery and it will have to be performed before he enters school(3-4yrs). My little man's next appointment is on July 20. We are definitely going to do the surgery in the near future. My son is handsome inside and out, but I sure don't want people asking him constantly if he is sleepy, if he just woke up or what happen to your eye. I received so much information from your blog. I just want to thank you. Please feel free to email any info you might have on ptosis @nabj1206@aol.com

Sheila Hurtt said...

Thank you for this blog! We are going in for our son Aidan's surgery tomorrow. Like your Aidan, he will have a levator resection, and like you, we feel incredibly lucky to have found an excellent, experienced doctor who has pediatric, plastic and ophthalmologist training, Dr. John Ng at Oregon Health Sciences University.

You always think you're alone in these things, but ptosis is so much more common than you think.

Your little man is a cute kid, and I hope we look at our little one with the same relief and satisfaction of having made the right choice. Bless you.

Sheila Hurtt (sheila@chrislhurtt.com)

Emily in NYC said...

So happy to find this blog. My 6-year-old daughter had ptosis surgery a week ago, and her lid looks just as low (if not lower) than it did before the surgery. I know the swelling still has to go down, but I'm afraid all of the pain we put her through will have been for nothing. Sleeping with one eye totally open was so hard for her!

Is there any reason to be optimistic that a few more weeks will make a difference? It doesn't need to be 100% better. I think at this point I'd settle for a 25% improvement.

kevnjacks said...

Emily in NYC - Thanks so much for writing! My surgeon had told me to wait about 1 month for all the swelling to go done before making any further decisions about what to do - so maybe give it another few weeks? Praying for great results for you guys! :)

Asian Movie Blog said...

Hi, my name is Nancy (Singapore). I had ptosis on my left upper eyelid. So far I have gone through 3 surgeries. However the last procedure, I became worst and It left me with hollow, larger eyelid display and without any fold. I did know what exactly went wrong. I am seeking second opinion to fix my complicated ptosis. Im praying for good results and hope I can really get experience surgeon and who does alot of revision. If anyone do have any doctors in mind, please recommend me or pm me at jospang2@gmail.com.

葦草 Lady-but-a-reed said...

Hi Jacklyn,
Thank you so much for posting this blog. Very happy to see your son's progress, and also very encouraging.
I've been searching the ptosis information for almost 20 years...fro me before, now for my son. happy for me to find this site.
To let other people know more information... I'm born with bilateral moderate ptosis(not inherited, gene mutation) I had bilateral sling suspension at 29. The side effect is, I sleep with eyes opened and got irritation easily. The good effect is, cosmetically, it's ok, looks normal, no one ask me if I'm sleepy anymore. I've seen all the most famous doctor in hk, before I've made the decision, really thanks for my doctor. But I do think we could have better solution for ptosis. It's the first time I've heard about levetor transposition.
My son is 4, inherited from me, and a bit more complicated than me, he also has severe shortsightedness in 1 eye, and astigmatism in 2 eyes, and lazy eye, and inward growing of lower eyelashes.

I want to find the best doctor for him, the best treatment, in
the best time.

Thanks Jacklyn again. I'll e-mail you soon.




I want to find the best doctor for him. I want him

Rich T said...

I'm in my 40s and suffering with congenital ptosis. Still uncomfortable with facing surgery, and am praying for a miracle. Am trying eye exercises from livestrong.com.

Suggest that if you can have your children treated while young, to do so, so that their vision is not impacted. I have severe astigmatism, which may have been caused by the congenital ptosis.

May God bless and heal all of you and your children. Please pray for me also.

triveni said...

Hello Kevin,

My son who is 2.8 years old is suffering from moderate congenital ptosis in his right eye. We are considering surgery in the future( May be when he is 4 or 5 yrs of age). But before that I wanted to know if the results of surgery will last long. Can you please let me know how little hero Adian is doing?
If you don't mind, can you please share some of your sons latest pictures.

kevnjacks said...

Hi Triveni: Would you mind emailing me? Mama4jc@gmail.com. Thanks!

Anonymous said...

I have severe congenital ptosis myself. I just want to say hi and good luck to you son!

Hillary Lynne Glaser said...

My son was born on 2/2/2012 with congenital ptosis and a jaw winking disorder. Thank you for posting your son's story!! I'm in the middle of posting Yoav's story. We have a meeting with our pediatric ophthalmologist next week but my Dad recommended Bascom-Palmer in Florida. Have you heard anything about their vision center?

Thank you again for posting this!!

kevnjacks said...

Hi Hillary - Thanks for leaving a comment on the blog! :) Unforunately, we have not heard anything about the Bascom-Palmer Vision Center in FL - where is that in FL? We were in Clearwater, when our son had his surgery. We would love to know how it went, though! Feel free to email me at mama4jc@gmail.com. We'll be praying for him! :)

Ragon (Arkansas) said...

I'm so glad I found this blog; I know you all know how I feel. Hillary, I read your comment and had to respond because my son was also born with ptosis and jaw wink. His is ib his left eye. He has been seeing a specialist in Memphis since he was 6 months old. He will be three this week. We are using the Hamleton Eye Institute. Three years old is the youngest his plastic surgeon (also located at HEI) would consider doing surgery because of the size of the muscles. Then, on his last visit to his pedeactric optometrist we really started talking about surgery. See, not only does he have ptosis and jaw wink but the same eye lens is unable to look up. All of this has ofcourse developed into lazy eye. We have been doing eye dilation drops in his good eye on and off since July because he refuses to wear his glasses and naturally a patch. To make a long story short, we have two surgeries to consider: eye lift and surgery on the nerve. We could just correct the ptosis and not worry about the nerve surgery to correct the lens. It's possible the nerve surgery could lead to loss of vision in his left eye all together. So, yes, we have a big decision to make. I would welcome any advice or just anyone needing support like me. There just isn't enough information out there. Anyway anyone can contact me at Ragon_w@yahoo.com. Thanks.

Anonymous said...

sorry to hear about everyone's similar predicament though nice to finally get some info from people with a similar issue(our GP has been very dismissive about it all and i'm interested in a second opinion from a specialist). we are only just starting down this road- our little bub (7 months old) definitely has some kind of congenital ptosis (her left upper eyelid is very droopy especially when tired, she always tilts her chin up, in fact that eye basically stayed closed for the first few weeks she was born). it's not so bad now, though of course us as parents definitely notice it. what's the first steps in getting it checked out, diagnosed, etc. i'm an american living in australia and people are much more slow about encouraging proactive visits, procedures, etc perhaps b/c a lot of it is paid for by the government? would appreciate any insight, advice etc as we are just starting out down this road and don't want to be too layed back about it all in case it does have later effect on vision, etc. many thanks!!!

Anonymous said...

Hi all,

It’s indeed nice to read and find a bit more about ptosis.
Our son was born with severe ptosis on both eyes. And as it would heavily disturb the normal development of the eyes he had a frontalis suspension surgery when he was 5 months. The surgery consists in lifting the eyelids using little silicon strips(ofc all on the inside leaving barely viewable scars).

His eyes were then very asymmetric but pretty soon after this surgery they aligned well, downside is that we have to give him eye-drops(hyabab) and a nightmoistening gel (duratears) to prevent his eyes to get dry.

Because ptosis is mostly a cause we were also sent to see a geneticist and based on ophthalmologic symptoms during those following months he was diagnosed with CFEOM( which is congenital fibrosis of the extra ocular muscles) when he was 1,5 year old.
His symptoms are: unable to lift his eyes so he uses his head to look up, he also has a limited horizontal mobility on his left eye, but also there we notice he uses his head to follow a movement. He is also a bit small for his age which according to the geneticist is possible as one of the types of CFEOM can link this to the eye problems. (google CFEOM and you’ll find a lot of info on it – this might help some of you as a lot of ophthalmologist have little or no experience with this)

It’s pretty hard to accept that something is wrong with your kid, knowing how rude the world can be you constantly ask question how he’ll cope with it.
If I read the internet I’m quite pleased with the swiftness the diagnosis went as I’ve read some reaction on ptosis of people that probably have a similar condition but don’t know it or will never know, hence why I posted.

Good luck to all

Cyndee Freeland said...

Hi! I have started a FaceBook page for Congenital Ptosis due to the lack of support and information from other families dealing with this same issue. I found your blog and shared it on my FB page! I noticed the blog post was from 2008, how is your son doing now with his ptosis? How many surgeries did he end up having? Thank you for your blog post about ptosis!

kevnjacks said...

Hi Cyndee: Great idea with the ptosis FB page! I'll hafta take a look at it sometime! :) I'd love to email you directly - can you email me at mama4jc@gmail.com. And within the post above, I have an updated blog post link for more current info. But I should really update it! LOL! :)

Anonymous said...

Hi,
My soon to be 3 yrs old daughter Coralie also has congenital ptosis in left eye.

At birth that eye was swollen and not opening at all. Her head came out with her hand glue on face when she was born knuckle put pression on it. When swelling when down she started opening her eye left to right a little, still not up... Our pediatrician said she could had ptosis or just extra swelling due to hand and or connection damage they told us it could maybe reconnect by itself or will need surgery later on. Over the first 6 mo she was able to open her eye left right and when well rested half open the lid up. Vision seem fine. Told us to wait and see.

My older daughter as different eye issue (muscle of eyes not align) and was seen by a opt ped from hasbro child hospital, ri.When going for her pre-op about two year ago, he notice my 6 mo baby lid and told us to start visiting him with her to make sure vision didn't go down also told us sign to worry about. aka if kid lift chin a lot or turn head on good side. He said she will likely need a surgery to fix her eye lid, when 3-4 yr old, if no change in her vision. He mention then,they rather wait since baby face change a lot. Since if done when baby very young will need to be redone once or twice(they do that only if baby have a hard time seeing or brain starting to not use eye). And they have to put her to sleep for operation.

First visit at 6mo then every year one visit. At first our daugther had good vision , just droopy eye lid left side. Then this summer for 2 year appointment, the collegue of our usual ortho ped notice she started not using her left eye as much prescribe glasse (lense with prescription on left side only) and the adhesive ortho patch on good right eye for 2 hours per day. And make appointement with our usual ortho ped for 6 week later to see if stabilise and or improve situation.

First my daughter hated the sticky patches, she has a lot of very long eyelashes adhesive at bottom patches run in them... so when remove patches we yank some out... so obviously we had to find something else. Since my daughter wear glasses I find an american company selling patches who could be wear on top of glasses and still block all side. They are made of felt. She was able to choose design she like a lot... a panda bear, and unicorn with rainbow hair.My ortho ped office also sell them but only had 3 design(baseball, soccer and a white cat)You could get them for about same price at with a lot of design directly at company web site: www.patchpals.com
The mom who started this also had a daughter with same issue. There a lot of picture of different kids and info. My daughter got a bracelet with message: I patch to make my eye stronger. She like seeing other kid wearing patches.

We manage to wear patches 2 hours per day while watching disney junior favorite show and telling her only way we will push her on swing set is if she have patch on.

Now after 6 weeks our usual ortho ped said she is not doing better her brain start not using eye so now she has to have operation as soon as possible. She now also have to wear glasse and patch all day...

part 1, rest next post
iris

Anonymous said...

Hi again,
Part 2
We got Coralie appointment for surgery in 4 week time. She was not happy about wearing it all day. Got more patches since now she also had to wear them at meal time. To make sure we always have some clean when wash the other and wait for them to dry. She was happy to choose 3 more design...she is a little girl after all. She wear it on and off, it is a struggle to keep them on. She will even inverse her glasses to wear patch on good eye, or drop them just a little... So we cannot leave her by herself in a corner playing without checking often.

Her surgery is coming this week, oct 4th. I will let you know how it go.

People have been very nice to her about her cute glasse and patches more positive then before. People use to ask us everywhere every day:
if an insect bitten her eyelid... or how she got hurt ...oh she is so sleepy poor thing, cant keep her eye open... or they taught she was winking at them so they started winking back.

It did make it a little more easier to explain now then is obvious!

hope this help,
iris
kanuck5@yahoo.com

Anonymous said...

Hi everyone,
It was very interesting to read through all of your stories. I also have congenital ptosis, just turned 43. My grandfather, mother, uncle, brother and daughter all have ptosis. I grew up thinking we were the only ones with droopy eyes. I had a few surgeries when I was 4-5 years old. Ptosis has never affected my vision. My daughter's doctor recommended that she wait to have surgery until she is a teenager...she so far wants nothing to do with surgery. My mother had surgery for the first time several years ago...the doctor did a fabulous job. If anyone would like to chat or have questions, I'm more than happy to share my experience. ...my email address is duffytmmc@gmail.com Thanks Tina

kevnjacks said...

Hi Tina: Thanks for your comment! So glad that your mom's surgery went so well! Praise God! :)
~Jacklyn

Anonymous said...

Hi. I thought I may too share my story on reading this blog.

My name is Joanna and I'm a 29 year old woman from Scotland, UK.

I was born with the condition, and my left eye was more or less closed. My parents opted for corrective surgery when I was 5. Life was hard, for a while after surgery I remember having to wear a patch, and being teased by the kids in my class as well as my siblings if they wanted to upset me. But hey.. Kids will be kids. If anything, having this condition made me a stronger person now than I could ever have imagined. My eye is still noticable in pictures and also if I'm tired or have had one too many glasses of wine, but being a girl have been fortunate to be able to perfect my makeup over the years to the point that its barely noticeable. I have a successful career, i've had several long and healthy relationships, and hope for a family of my own in the future.

Don't worry too much for your kids folks, as far as conditions/disabilities go, I feel fortunate that this is all I've had to deal with in life and I've come out the other side stronger, and I'm sure your kids will too!

Good luck all!

Joanna X (jlmdambrosio@hotmail.com)

Anonymous said...

Hi priti shah. Are you a gujrati girl from india. So am I. Even my 3 month old son has left upper lid congenital ptosis. And my story is exactly same like you. One of my 3 doctor said patching for 2 hrs. And immediate surgery rather the other two doctors says no patching required. I am completely confused. Can I personal mail u. Can I have your email id plz. Thanks in advance.

Anonymous said...

Hello, I see this is a blog that started in
2008 but I would like to get some feedback
if possible.

My daughter 7 months was diagnosed with
ptosis. Dr. Katowitz from CHOP recommended Tarso-Conjunctival-Mullerectomy surgery.
He said surgery can be done any time after
6 months but better before 2 years old. I have read that it is better to wait til child is 3-4 years old.

Has anyone had this surgery performed? How old was your child? how was the outcome?

Thanks

kevnjacks said...

Johanna - Thanks so much for your comment and I agree with you. I was so glad that ptosis was all my son had and that it was not life threatening. I definitely praise God for that! :) You have a great perspective! :)

kevnjacks said...

Hi Anonymous: We live relatively close to CHOP actually, so we might be local to each other. I've not heard of the procedure that was recommended for your daughter but looked it up a bit. It looks like a typical resection but done with the incision on the underside of the eyelid. As to when the child should have it done, only the physician can tell you because it depends on the severity of the ptosis. But you can always get a second opinion if your gut feeling is that she should wait to get operated on. My son did not have this procedure, so I cannot answer the rest of your questions. Hopefully someone else can chime in. Hope this helps!

Jenny Garcia said...

hello my name Jenny i have a 5 month old son he was born with PTOSIS from what it look like my Dr said first time they saw him that it will go away hasn't i have to c a specialist on April 17and important scar they might tell me he needs have surgery shud i wait he to young right now one of his pupil is smaller then the other one . i want thank u for sharing your story it help me alot to know there other mother going threw this

Anonymous said...

Thanks so much for commenting on my post. I am the mom of the 7 month old girl that was seen by Dr. Katowitz. I'd love to connect a little more and ask you a few questions about anesthesia.
My name is Angelica and Im in Marlton, NJ

Thanks!

kevnjacks said...

@Jenny - Thanks for commenting on this post. :) I'm so glad that you found the post and the comments helpful - you are definitely not alone. :)

@Angelica - Feel free to email me - mama4jc@gmail.com. Hope to hear from you soon!
~Jacklyn

Ming R said...

I am really glad to find this blog and I find it very helpful and comforting to read stories of folks who have similar issues. My son, 6 mths old has sever Ptosis (only 1mm levator function)in his left eye. Hence that really limits his surgery options, according to the specialist we are seeing. We definitely want to seek a second opnion before we have anyone operate on him. We live in Nashville TN but willing to travel to other states for a second opnion. The hospital rankings I found on line indicated that Bascom Palmer (someone had mention it too) in Miami FL is the #1 opthamology clinic in the nation. Has anyone done any research or have any recommendations on which surgeon/clinic is good or what web sites to use for research? I am also concerened about the post-op problems of having his eyes opened all the time. Folks who have this issue, were there other routes you could have chosen or was it recommened based on the surgeon's familarity with the procedure? Thanks so much for asking my questions. I am channeling my tears to enery and resolve to find a the best path for my little one. Good luck to everyone!

kevnjacks said...

Hi Ming R - Thanks for your comments! Instead of writing a bunch here, would you mind emailing me? mama4jc@gmail.com. Looking forward to your email. :)

Unknown said...

Hello, My niece will undergo. second surgery for ptosis.She will be six years old and this time she knows the procedure from previous experience.She is extremely scared and I was wondering if anybody utlized professional counselling to prepare their little one.

Unknown said...

Btw this is Meenu from Texas and my niece Aanya is in New Delhi, India.

kevnjacks said...

Hi Meenu: Thanks for your post! My son was also very scared the second time around and it was very sad to see him so distraught. We did not seek professional help for him, so cannot comment on that. But we did pray with him and for him a lot. Maybe someone else can comment?

proverbs235 said...

Hello. I am the grandmother of a beautiful 8 mos old girl. My husband and I are raising her because her mother used drugs during pregnancy. I have noticed that her left eyelid droops when she is tired and sometimes closes briefly at what seems random times. I have 2 questions: does this seem like symptoms of ptosis? And do you know of drug exposure is a known cause?
Thanks and Blessings!

kevnjacks said...

Hi Proverbs235: Thanks for the comment! I'm not sure if your granddaughters symptoms indicate ptosis; you would have to check with a pediatric ophthalmologist. I can say that my sons droopy eyelid was persistent and it never changed. And I have no idea if drug exposure might be a cause. Sorry about that! God bless in finding a good doctor that can assist you. I'm glad you noticed it and can get her diagnosed early on! :)

JOHN POE said...

I do have the same congenital ptosis problem since birth. All you've said are exactly the same situations that I've been dealing with. The worst scenario is if someone notices it, they make fun on my eyes by imitating it. They always degrade me and put me on a situation to laugh at. The anxiety that I've been having every moment and every second is really affecting my life. I feel so weak and different, it's like I am nobody in the eyes of the many. I am just so fortunate to have a loving partner who accepted me for who I am and a very supportive family. The doctors that I consulted before told me that there are no longer chances to correct my eyes. I don’t know if I still need to continue dreaming to have a normal eye but there is one thing for sure, that I am not alone. I promise that no matter how difficult the condition I am going through, this won’t change me as a better person.

kevnjacks said...

Hi John Poe - Thanks so much for your honest comment. I really appreciate your openness. I'm so sorry that people have been so unkind. It is so frustrating! I know that it was our faith in God that really helped our son and my husband and I through this process. It is a shame that bad things happen to God people in this fallen world. :( We'll be praying for you! :)
~Jacklyn

Anonymous said...

Hello, I've been reading. Ur blog for a few wks now~ & have to coment~
I was born w/ ptosis (r) eye~ my parents decided that surgery would improve my over all well being~ I had Levator resection, it took mths for the swelling to resolve~ and I never could close my eyelid all the way~
And as time went on, the lid began to droop~ @ 44yrs of age~ I went in for another corrective surgery~ ( I'm 4wks PO) I had my good eye surgically altered with blephroplasty~ at first the ptosis repair looked like it was gonna work, it seemed almost even with the other eye~ but as swelling started. To go down my ptosis had returned, this time I also have a very thick lid, which is purple~ I look like a freak~ I saw my OPS mon for my 1mth PO and she was a bit rude~ telling me she doesn't preform mirauules
And I was being un~realistic about my results~ When we looked @ my B4& after photos My eye looks just as closed but with thick lid & purple color~
The Dr then told me that it will take up 2 6mths for the healing process & to just b patient~ I'm curious to know if anyone else has had this type of expirence & if so....... did the lid raise up after a few mths???
I did ask my OPS if a 3rd surgery would b needed & she strongly advised against doing it, as it could cause more harm then good~
What should I do???? Give it time & pray ill wake up looking more normal or do I seek out another OPS to do a 3rd surgery???
So frustrated & let down~ I just want to more normal~ I hate that my whole life seems like the circus & I'm one of the side shows~
Any feed back would be appreciated........thx

kevnjacks said...

Hi Anonymous - Thanks for posting! So sorry to hear that this has been a frustrating process for you this time around. I totally understand your desire to have more even eyelids - I wanted that so much for my son. I remember that my son still had some swelling 4 weeks post-op; maybe give it some more time? Esp since you are now older and healing can take longer. We will be praying for you. :)

Anonymous said...

Hi, I am italian and I have a daughter with a congenital palpebral ptosis. I am looking for the best Doctor in the world. She has been operated 3 times (muscle resection) in the last 5 years but not resolved. Se is 12 now and she is a teenager so problems becames bigger. Can you help me?

My Doctor says that the last option is the frontalis sling using fascia lata but She says that the result is not very natural.

What do you think about it?


Thanks a lot

Kind regards


Francesca

kevnjacks said...

Hi Francesca: Thanks for your post! I would highly recommend Dr Gross in Palm Harbor, FL - he is really one of the best in the field, in my humble opinion. My son had a resection and was able to go for the sling when we happened upon Dr Gross (such a blessed 'accident' - he was close and took our insurance at the time) - I think he would be able to give you the best assessment and advice. Please feel free to email me if you have any further questions. :) Mama4jc@gmail.com is my email. God bless on figuring out the best thing to do! :)

Beck said...

Hi there,

I hope you are still checking the blog as I've just found it. My 5yo just had the levator resection surgery 10 days ago to correct his congenital ptosis in his left eye. Presurgery the droop was about 2mm. Post surgery its at least 5-6mm. While his eye is still somewhat swollen, it's fairly clear the droop is way worse. The surgeon wasn't happy with the results at his follow up and has mentioned follow up surgery.

I'd love to email you with some questions about the post op swelling and the difference you saw between the surgeries? I feel like a terrible mother right now as it was something he didn't even know he had and now its SO much worse :(

My email is beckcattermole@gmail.com. Would love to hear back from you.

Anonymous said...

hi,
i had congential ptosis since birth. i just got treated with surgery but i cant move my eyelid .. i cant blink. and its frustrating... will it get better with time . as per my dr. i wont b able to shut my eye completely. now i m scared. can i undo this surgery?

kevnjacks said...

Anonymous on 9/27 - emailing you!

Anonymous said...

My son was also born with ptosis and went through surgery in February, but I've been spending the better part of 8 months researching ptosis for a project I'm doing. Just to be clear for everyone, congenital ptosis correction surgery is just about the most difficult and most frustrating surgery for all involved, including the surgeon. I got my hands on a few medical textbooks and journal articles devoted to ptosis and the information inside is not reassuring. A few quotes:

From a journal article, "Clinical Evaluation and Management of Ptosis":
- “In spite of the variety and ingenuity of remedial operations, the results of ptosis surgery are by no means invariably brilliant.”
- “One inherent drawback to all ptosis procedures is that perfect cosmetic and functional results cannot be expected in every case.”

From the textbook Evaluation and Management of Blepharoptosis:
- “Honest, critical eyelid surgeons will agree that very few ptosis repairs have “perfect” height and contour.”
- “Despite careful preoperative planning and meticulous surgical technique, ptosis surgery is more often met with a suboptimal result than other commonly performed eyelid procedures, such as entropion and ectropion.”
- “Surgery for droopy eyelids seems destined to remain as much an art as a science.”

From "Assessing and Correcting Ptosis," a paper released by the American Academy of Ophthalmologists:
- “For the doctors who treat it, however, repairing ptosis in children can be especially challenging. The younger the child, the more difficult the ptosis repair.”

My son's surgeon told us several times both before and after the surgery that it might not be perfect the first time, but that he'll do his best to improve my son's sight and appearance. That was all we could ask, and we are happy with the results.

Hope that helps.

kevnjacks said...

Hi Anonymous from 11/8: Yes, it's so true how hard getting a great result with ptosis surgery can be. That's why I felt particularly blessed to have met Dr Gross who was also a plastic surgeon, though he is also a pediatric ophtho who is highly skilled in ptosis surgery. :)

Anonymous said...

Hi I've had ptosis since birth and I was born with one eye single eyelid (ptosis) and another eye which is double eyelid. I was wondering if I can do a ptosis surgery and a double eyelid surgery? And I live in singapore so do you have any recommendations of good eye doctors? Please feel free to email me at : sandramaine12@gmail.com
(:

kevnjacks said...

Hi there: I will email you soon. :)
~Jacklyn