Congenital Ptosis

[rinksmum]

Hello,

My 3-month old son has congenital ptosis - a drooping eyelid - and I just wondered if anyone else has come across this? His right eye is fine, but he can only open his left eye half-way, due to (I think) a weak muscle in his eyelid. We cannot get in to see a specialist until the end of October, and in the meantime I am just a bit worried that his vision will become impaired. I'm pretty sure he will need an operation to correct the problem, but so far I don't know anything about it and I'm too impatient to wait until October to find out more!

Any advice would be appreciated.

Thanks
Hannah

[mrsd040]

Hi Hannah,

I have just read your post and my 7 month old son also has this condition. on his right eye. it is quite difficult to find much information on , and most people don't know anything about it. We have to patch our son's good eye for an hour every 2nd day to ensure he does retain his sight in that eye. and so far everything is ok. We have been told that they will operate when he is 3 or 4, and will cross that hurdle when we come to it. I hope everyting went well for you with the specialist, and wish the very best to you and yours.

Sophie

[♥Heaven Sent♥]

Hi there,
My mum had this when she was born in both eyes,her eyelids completely covered both eyes,she had an operation though they put some muscles from her leg into her eyes to keep the eyelids up,she has no probs with seeing and the only thing is that when she sleeps her eyes are slightly open,hth i dont really know too much about it but thought id just let you know about my mums expiriences.
Jaclyn

[melbabie]

my DD#1 has a drop eyelid is get really bad when she is tired. she is now 2 and half i am going to get it checked but cant get in till next year.

[mrsd040]

Thank you for letting me know your experiences. I have just found out that my Aunt had the same condition when she was younger, it was corrected and you can only notice a slight droop when she's tired, and that was 40 yrs ago.
Best of luck with your appointment next year Melbabie
Merry Christmas:tree:

[rinksmum]

Hello,

I just came across your replies today, thank you all! I thought I'd let you know that my son had a facial sling operation performed on his left eye in November 2006 (aged not quite 5 months!), and it went brilliantly. He is now 11 months old and most people would not know he'd ever had a problem (unless they happen to catch him when he's really tired!). His surgeon says there is a chance he might need to have the operation done again when he gets a bit older, but we'll cross that bridge if/when it happens. Just wanted to reassure anyone else out there whose child might be facing a similar operation....

Hannah

[liquidKenzie]

When my son was 2 months old, we noticed that his eyelid was drooping. At 4 months old, we took him to an opthamologist who told us that surgery is the only option to correct it. Fortunately, his eyelid did not droop below his pupil, so his eye sight was not affected. The droopy lid would be more noticable when he's tired, etc. I couldn't find any information on how to correct this -- the only option was surgery (when he's older).

Fortunately, my babysitter mentioned this to her chiropractor and her chiropractor said that she could possibly fix it (without surgery)! At our first consultation, she concluded that his skull bones are fusing together nicely, but the bones might be off my a hair, which is affecting the nerve that triggers his eye muscle. She gave him a 10 minute head adjustment (no twisting, or crying, just some pressure on certain areas of his head) and I kid you not, it was noticeably improved within 3 days. He had 1 more adjustment a week later, and I have seen such an improvement! I am amazed. I just wanted to let you know this, before you think surgery is your only option.

I never went to a chiropractor before, but I am totally impressed! Good luck

[debceleb]

Hi,

My newborn seems to have the same problem in his right eye. Should I go to a peadiatrician first for a referal or can anyone recommend a good chiro / opthalmolagist in Sydney?

Thanks, Debbie.

[debceleb]

Please can you provide the chiro details if in Sydney? Thanks...

[lovemybratz]

HELLO IM MOTHER OF THREE AND MY SON WHO IS NOW 8 HAS PTOSIS IN BOTH EYES! I TAKE HIM TO HIS EYE DOCTOR ONCE A YEAR SO FAR SO GOOD HE DOES LIFT HIS HEAD UP TO LOOK AT THING SO HIS NECK HURTS HIM AT TIMES.NOW HE IS AT THE AGE THAT HE KNOWS SOMTHING IS NOT RIGHT WITH HIS EYES HE SAID TO ME ONE DAY MOMMY I HAVE SAD EYES ALL THE TIME AND THERE WEIRD I SAID GOD MAID YOU SPECIAL AND HE SAID NO MOMMY GOD MAID ME WRONG IT MAKES ME VERY UPSET TO SEE HIM SUFFER I MIGHT CHECK INTO SURGERY THE DOCTOR SAYS HE DOES NOT NEED IT BUT IT WILL MAKE HIM FEEL BETTER.BUT WITH PROBLEMS WITH HIS EYES I REALLY HAVE HAD NONE JUST SOME DAYS IT LOOKS REALLY BAD AND SOMTIMES HE STUMBLES BUT I HAVE A GOOD OUT LOOK IT COULD BE ALOT WORST THANK GOD THATS ALL THATS WRONG WITH MY BABY!!!!!!!! SOME PARENTS HAVE CHILDREN THAT CAN'T SEE AT ALL!:fingerscrossed:

[rinksmum]

Lovemybratz, I agree with you completely :yes:. I often think that about ds2, we are very lucky really. I was sad to hear about your son feeling down about his eyes though, it must be heartbreaking for you. The surgery was a success for ds2, but he was classed as severe (ie his eyelid drooped below his pupil) so the ptosis was affecting his balance, etc. His eyelid still droops a little now when he's tired, but it is much much better than before. I can give you the name of our paediatric opthamologist in Brisbane if you like, although I think you still might need a referral from a GP or someone. Or else maybe you could look into the chiro that liquidKenzie suggested?

[ingypops]

Hi there

I have been researching this for the past hour or so online and finding all this feedback from you guys has been great.

My son has what I would think is a mild ptosis. One eye actually looks smaller than the other but I don't think it affects his vision. It may do but I'm not sure at this stage as he's 8 months old.

I have made an appointment to see an ophthalmologist on the Gold Coast (who also works on Sunshine Coast and in Brisbane). His name is Dr Stark. Do you know of him? I would love to hear feedback from anyone.

Also I would be interested to try out the Chiropracter option too if anyone can recommend someone to me. We are relocating to Sydney in March so if anyone has a recommendation for an ophthalmologist or Chiro in Sydney I'd be very grateful.

We think our little guy is adorable regardless but I'm more worried about teasing etc from other kids as he gets older. Already every man and their dog comments on it and it just gets a bit tiring after a while.

Thanks again

Inger

[rinksmum]

My son has what I would think is a mild ptosis. One eye actually looks smaller than the other but I don't think it affects his vision. It may do but I'm not sure at this stage as he's 8 months old.

I have made an appointment to see an ophthalmologist on the Gold Coast (who also works on Sunshine Coast and in Brisbane). His name is Dr Stark. Do you know of him? I would love to hear feedback from anyone.

Hi ingypops :wave: I don't know Dr Stark but I'm sure he will be able to tell you if your DS's condition is mild or severe. Does he tend to rock his head back to see properly? My DS started doing that from a very early age, pretty much as soon as he could support his own neck...if he doesn't, then hopefully your DS only has a mild case? The docs suggested to me that it is 'severe' if his eyelid covers the top part of his pupil, which means it also will affect his vision. Our opthamologist decided DS's case was severe so referred us to a specialist surgeon - the only one in Qld that performs this particular op I believe, I think he may work in Sydney too sometimes? Anyway, DS had a frontalis sling operation, which worked a treat :thumbsup:. I think they only do that with the little ones if the case is severe though, with milder cases they seem to wait until the child is 3 or 4 years old before they take any action, if at all.


We think our little guy is adorable regardless but I'm more worried about teasing etc from other kids as he gets older. Already every man and their dog comments on it and it just gets a bit tiring after a while.

I know what you mean :yes:! DS was only 4 months when he had his op, but already in that short time we had SO many people comment on his eye - "oh, he's winking at me!" or "looks like one eye has gone to sleep!". They didn't mean anything by it of course, but its hard not get a little frustrated when people keep pointing it out. :hair: I think most people just don't even realise ptosis is a condition, I certainly didn't before DS came along!! Feel free to PM me if you want any more info - I'm not an expert but I couldn't find much info on the net myself so I've quizzed our docs a fair bit!

[krisp]

I Just Thought I'd Let Everybody Know That I Was Born With Ptosis In Both Eyelids. I Had To Tilt My Head Back To See. When I Turned 5 My Parents Both Took Me To Iowa City To Get Surgery. They Took A Muscle From My Right Thigh And Put It Above My Eyebrows To Hold My Eye Lids Up. Now My Eyes Are Fine, But, I Can't Blink, I Sleep With My Eyes Slightly Open (which Freaks Ppl Out) And Since My Eyes Don't Really Shut All The Way Or Ever Unless I Try To Blink, I Get This Nasty Gunk Between The Non Existing Eye Lids. My Eye Lids Look Like They Are Superglued Shut Or Something. I Would Really Like To Know If There Is Some Other Kind Of Surgery Where I Can Actually Have Eye Lids But Not Have Ptosis. I Am 21 Years Old Now And I Came Across This So I Just Thought I'd Post A Comment. Thank You, Kris

[debceleb]

Hi there,

My son is seeing Dr Martin at the eye institute in Chatswood. He has mild ptosis but as his vision is not affected we will wait until he is older to get the sling op. Its definitely noticeable as he doesn't have a proper lid fold on the left eye but at this stage cosmetic only. I did try a chiro as well - but no improvement (although it was good for getting him more settled) - I think the chiro can only help if its a nerve issue not a muscle problem - but always worth a try. I went to Complete Health Chiro in Chatswood.

[dannyboy]

My little boy aged 4 is due to have sling surgery to both eyes to correct congenital ptosis or droopy eyelids. He is to have this surgery when he turns 5 and before he starts school. Does anyone know someone who has had this sugery and what should I expect. I'm fiding it hard to tell him about the surgery.

[debceleb]

Hi there,

My son is 2 now - and will also get the surgery when he is a bit older, before school. Apparently the surgery is day surgery and the results are good. I have had to explain to older kids about my DS eye, but he maybe gets more attention as only one lid is lazy and so its not symmetrical. I tell them it is like Nemo's fin and that its ok to be a bit different, but that the doctor will fix it when he is a bit older.

[debceleb]

Hi Ingypops,

Not sure is you have been referred as yet but Dr Martin at Chatswood eye institute does these ops almost daily and has a great success rate. He also has offices in the city. It is a fairly long wait to get into him and if its a mild case, they would likely look at shortening the muscle rather than the sling which my DS needs.

He will also probably recommend you wait till befor school before any surgery as the more lid tissue the better but they do understand that other kids could cause distress through teasing or comments. I also tried a good chiro in Strathfield - I think its called Chiro for kids - they have had success with some cases of ptosis but depends on he cause.

Good luck!

[rinksmum]

My little boy aged 4 is due to have sling surgery to both eyes to correct congenital ptosis or droopy eyelids. He is to have this surgery when he turns 5 and before he starts school. Does anyone know someone who has had this sugery and what should I expect. I'm fiding it hard to tell him about the surgery.

Hi Dannyboy, not sure if I'm too late but thought I'd post anyway :)

I first posted on this subject when DS was a baby, and he is now 3 years old. He had the sling operation when he was 4 months old. He was in theatre for less than an hour and went home after a couple of hours in recovery. He had a bandage/patch over his eye for the first day, which we removed the following day. The operation made a huge difference to our DS and we are so grateful that we had it done. Even now, at 3 years of age, DS has no idea about his ptosis and his vision is great. So far his surgeon is happy that he won't have to have the surgery done again for years, if at all. Sometimes he still lets his eye drop when he is tired, but otherwise most people wouldn't know he'd had the surgery - his scars are tiny and almost invisible.

One day we will have to tell DS about his eye and the surgery he had, but so far we haven't had to do that. When the time comes, we plan on explaining that his eyelid didn't work properly, so the doctor put in an elastic band to help him see better. I'm still a little unsure as to exactly how it works, but my basic understanding is that the 'sling' connects his eyelid to his eyebrow muscle, then he instinctively uses that muscle to open and close his eyes.

Hope your son's surgery goes well and you are as happy as we are with the results :)

[proud mama]

Hi, how are you?
I have come across your message in regards to your babie's eye. It is quite an old thread but i am going tru the same thiung, and i would love to know how long did it take to his eyes to get better after the chiro and how is it now?? My baby was diagnosed with ptosis at 2 weeks and we are taking him to the chiro. Please answer me if you can. Thanks

[MumNeedsCoffee]

Hi there,

My son is seeing Dr Martin at the eye institute in Chatswood. He has mild ptosis but as his vision is not affected we will wait until he is older to get the sling op. Its definitely noticeable as he doesn't have a proper lid fold on the left eye but at this stage cosmetic only. I did try a chiro as well - but no improvement (although it was good for getting him more settled) - I think the chiro can only help if its a nerve issue not a muscle problem - but always worth a try. I went to Complete Health Chiro in Chatswood.

I don't know about ptosis but my daughter is seeing Dr Martin as well for another eye related problem.
If you google him you would see that he has a wealth of experience behind him that is quite impressive.

Good luck!
I love the PP that mentioned describing to her son that it's a bit like having nemo's fin and it's okay to be different. I'll keep this in mind when my daughter is older and asks about her eye.

[MumNeedsCoffee]

By the way I just wanted to add you might want to see the Eye Clinic at Westmead Childrens Hospital.
That is where my daughter started treatment with professor martin but has also been seen by another specialist there.
You may be able to get this seen to sooner than waiting to see an individual specialist.

[ingypops]

Hi there

We have had a few appointments with Dr Stark since my original posting. At each of these appointments we have been happy to note that our sons eyes have not degenerated. They are in perfectly good health and it's only a minor ptosis in one of his eyes (purely aesthetic).

Dr Stark has however recommended surgery for him between the ages of 3-4. We have a new baby arriving soon though so will hold out until he's closer to 4 years. Additionally I have just put in a call to Dr Martin in Sydney to get his recommendation on Dr Stark or alternatively supply me with another name so we can get a second opinion.

I am slightly conflicted in regards to the surgery. On one hand I have people telling me not to do it as its not hugely noticeable and on the other hand I feel like it's not adults that will comment on it - it's kids and I want to help him avoid that type of situation. You never want to put your child under anaesthetic unless it's completely necessary so we have a few decisions to be made. My gut feel is that we should do it but both my partner and I need to be on the same page. We'll just see what the second opinion is.

Anyone with any stories of post operative care / results - I'd love to hear them.

Thanks and good luck to you all!

Ingypops

[gringosmith]

Well sorry to say but there is no non-surgical treatment for ptosis. As operations go, the operation is simple and quick. You might like to wait until you can make your own decisions.

[lanhchiyen]

Hello there,
I have a 3 years old girl with congenital ptosis. She had surgery when she was 10 months old and it was ok. Her doctor said she will need 1 to 2 other surgeries when she gets older to make her right eye perfectly . Right now, the right eye is still not very symmetrical with the left non-ptosis eye, but her sight is very good. I am now pregnant 24 weeks and i am worry a lot if ptosis may happen to my 2nd child again...i am not sure what cause it so i am so worry ! Please ! If anyone know about this or has the same problem, please share with me....if ptosis can happen with another child in the same family? thanks

[rinksmum]

Hello there,
I have a 3 years old girl with congenital ptosis. She had surgery when she was 10 months old and it was ok. Her doctor said she will need 1 to 2 other surgeries when she gets older to make her right eye perfectly . Right now, the right eye is still not very symmetrical with the left non-ptosis eye, but her sight is very good. I am now pregnant 24 weeks and i am worry a lot if ptosis may happen to my 2nd child again...i am not sure what cause it so i am so worry ! Please ! If anyone know about this or has the same problem, please share with me....if ptosis can happen with another child in the same family? thanks

Hi Lanhchiyen, and congratulations on your pregnancy! Just thought I'd let you know that I gave birth to our little third little boy 5 months ago, and his eyes are both fine (as are DS1's) :thumbsup: Try not to worry, chances are that everything will be fine with your second child's eyes!

Good luck :flowerz:

[skye04]

Hi Lanhchiyen,
I also have a nearly 3yr old who was born with congenital ptosis which will require surgery, we have a appointment with specialist in Sydney on 23/3/10 to see when he will do it, Im also 29wks pregnant with #2 & have been wondering the same thing, im going to have a chat to the specialist & see what he says bub #2's chances are of having it as well.

[lanhchiyen]

Hi Rinksmum ! Thank you very much for your support ^_^ . I also try to support myself everyday that my 2nd child's eyes will be normal. Although my husband and I ignored the sad feeling inside, but we can't help ourselves to feel very sorry for my 1st daughter everytime kids at the play grounds regconize her right eye and stare at it...My 1st daughter becomes more shy....

Skye04: Congratulations for your 2nd baby to be ! I am 27 weeks now and try to think about the best things that Lord can give to us. My 1st daughter was surgery in my home country -US by a very good eye specialist after we got a lot of comments about him. My daughter's sight is normal well and a lot more wide open than before surgery, but she still need 1-2 cosmestic surgeries later to make the right eye be PERFECTLY symmetrical with the left eye. I hope your daughter's surgery will be going very well with a great result, also your 2nd child will be perfect baby. If you have any information about the chances this will happens to the next pregnancies after you chat with the specialist, please share with me. Thanks alot !
Bless you and your children

[graciousmom]

Hello,

I just came across your replies today, thank you all! I thought I'd let you know that my son had a facial sling operation performed on his left eye in November 2006 (aged not quite 5 months!), and it went brilliantly. He is now 11 months old and most people would not know he'd ever had a problem (unless they happen to catch him when he's really tired!). His surgeon says there is a chance he might need to have the operation done again when he gets a bit older, but we'll cross that bridge if/when it happens. Just wanted to reassure anyone else out there whose child might be facing a similar operation....

Hannah
Thank you Hannah for this information and congrats on the outcome of your baby's surgery.My 7 month old baby has a similar problem.he has been diagnosed with bilateral congenital ptosis since he was 2month old and has since been raising his head and using his finger to raise his eyelid in order to see.we have been to the specialist on a number of occasion but we would like a second opinion as nothing positive has come out of this.We are scared his vision is being affected. having to wait till he is 3 or 4 years old seems too long.could you please give me the details of the specialist you consulted in brisbane as soon as possible?Thank you

[sbjagtap]

Hi

My daughter having same issue. Please provide me chiropractor contact number


When my son was 2 months old, we noticed that his eyelid was drooping. At 4 months old, we took him to an opthamologist who told us that surgery is the only option to correct it. Fortunately, his eyelid did not droop below his pupil, so his eye sight was not affected. The droopy lid would be more noticable when he's tired, etc. I couldn't find any information on how to correct this -- the only option was surgery (when he's older).

Fortunately, my babysitter mentioned this to her chiropractor and her chiropractor said that she could possibly fix it (without surgery)! At our first consultation, she concluded that his skull bones are fusing together nicely, but the bones might be off my a hair, which is affecting the nerve that triggers his eye muscle. She gave him a 10 minute head adjustment (no twisting, or crying, just some pressure on certain areas of his head) and I kid you not, it was noticeably improved within 3 days. He had 1 more adjustment a week later, and I have seen such an improvement! I am amazed. I just wanted to let you know this, before you think surgery is your only option.

I never went to a chiropractor before, but I am totally impressed! Good luck

[Bluefiretail]

Hi everyone! Just searching BH for info on ptosis and decided I'd bump this thread!

I was born with congenital ptosis in both eyelids (from my father). My parents had the option of surgery at 5 years old to correct it, but decided against it, as it didnt affect my vision.
I have been lucky in that both my drooping eyelids almost match completely (the difference was only pointed out by my specialist - I didnt even know until then!).
I suffered a lot through high school, so decided on my own to have corrective surgery just before I turned 18. The surgery didnt work (my choice of specialist turned out to be a bad one!) and to put it lightly I didnt take it too well at the time!
Uni was no better, don't get me wrong, I still had lots of amazing friends, and still do, but you know how it is with even just a couple of meanies :p

I have almost completely 'cured' myself of my concerns about my eyes, but the old damage from being teased is still there. I'm happily married to an amazing man who loves what he calls my 'bedroom eyes' hehehe :D
I understand why my parents made the decision they did, but mine was certainly noticeable and the kids picked up on it! Looking back, had my parents had the knowledge they do now on what I went through, they said they probably would have considered surgery.

Okay, so the point of my email - DH and I have been TTC for around 14 months now, so we'll hopefully be having a family sometime in the future!
We have researched congenital ptosis, but can't seem to find much info on how the hereditary bit works?

Have many of you got ptosis running multiple generations in your family? As I mentioned, my father had it - His mother (my gran) didnt have it.... I never met my grandfather, but can't see in photos that he seemed to suffer from it....

Does anyone have any insight in to how likely it is that my children will carry it on?

Not a huge concern at the moment obviously, because we're not even pregnant (!!) BUT it is a concern for me, and has been since I thought about bubba's with DH....
Any insight would be wonderful!
xx

[Bonneyjean]

Ptosis extreme to not there!!

My 2nd child DD was born with her right eye closed screaming and in pain (calm,natural, waterbirth) so I knew something was up.

Found out about ptosis and was relieved to know it was exactly what DD had as well as a blocked duct -that drains away tears in the eye so it was droopy and gooey - everyone noticed and every commented!!

Saw chiropractor where sacral occipital technique and craniopathy were used (gentle and safe for bubs) - after 1st adjustment at 2days old DD fed, slept and opened her right eye!!

With more treatments came more success - sometimes it would hold meaning her ptosis eye matched her normal eye - other times not so much. When she was tired her ptosis was worse again.

After a few months into the chiropractic treatment Dr SANDY CLARK suggested Dr JOYAA (not sure of last name) an osteopath/craniopath on the Gold Coast so off we went and WOW between the two of them and 3 appts to Dr Joyaa she has both eyes matching the duct is working and she is not in pain - they explained it all and we understand it's a continuous process of seeing chiro one month osteopath the next month but I'd rather this then the surgery for her any day!!

7 months old now and no one can tell there was a problem!!

Please feel free to ask more