marcus gunn jaw winking phenomenom...

hey everyone...been a while since i have come on...being back at work has definitely put a damper on my computer time!! anyway...we just went to the eye dr yesterday and was told evan has a rare condition called marcus gun jaw winking phenomenom...a mouthful. it doesn't seem to be that big of a deal, but was wondering if anyone else has ever heard of it... Evan is a 30 weeker who is now 9 months old...he was 3 1/2 lbs at birth and is now an amazing 19 lbs 4 oz. he is so unbelievably wonderful and healthy...but we have always noticed his one eyelid seemed to droop a little...more so when he is tired, and it does seem to have gotten better over time. It does not interfere with his vision...he tracks and sees well. Everyone has kind of kept an eye on it (no pun intended!) and we just went to a different eye dr who asked if his lid moves when he eats...and i said yep! That eyelid has always moved up and down (again, more pronounced when he is tired) when he eats his bottle...so that is what it is...apparently rare and Evan's case is apparently mild...dr states that he may just compensate in time, but that surgery can be done down the road to keep the lid up...however since his is mild, we don't want to do that and have it be too much if he does compensate.... just thought i would see if anyone has ever heard if it...

150 Replies

  • In reply to applemac:

    Hi applemac, I'm Ann from Singapore as well. My Daughter is currently 2 weeks old and I've already noticed that her left eyelid goes up and down whenever she Nurses. Like you, I'm unable to find any form of support group locally. I have some questions I would like to ask you if you don't mind and I'm wondering if we can contact each other via email? My email is mwongyx@gmail.com. Really hope to hear from you!
  • In reply to rose_79:

    Hello,

    I've just been reading your letter about your daughter who has MGJWS. I'm not sure if you have had many replies from the UK but my son who is just about to turn four has it too. It's nice to know there is someone else in the UK, I was starting to feel very alone here in the midlands. I haven't heard of anyone else who has this condition and have been looking for a support group UK based but had no luck!

    From your letter you were looking for some advice about surgery. Our son's ptosis is not too bad and we have opted not to have surgery at the moment. Although when he eats and speaks his eyelid can open very wide. The hospital have advised us to leave it until our son is older and he can make the decision himself. The only reason they opt for surgery is if the eyelid is permanently over the pupil, this can cause problems with the light into the eye.

    I hope you find this helpful. It would be lovely to hear what your local hospital have to say and to find out what you have decided to do, please let me know?

    Hope to hear from you soon.

    Ps. I have tried emailing you directly but it keeps bouncing back.
  • In reply to Barbara C.:

    dear barbara,
    i am manisha from india. i have mgjws and i am 25 yrs old. i had red few months ago that thier is reaserch going on in this area in some ohio state university hospital if i am right. please can you give me some info. regarding that.as how is the progress in the reaserch or where is this university exactly. what is the current status of this reaserch.ect...waiting for your reply....
    thanks
    manisha
  • I would not do the surgery. My Daughter has MGJW and the doctors have told me surgery is not a good idea because finding the nerves that are connected to both the eye muscle and jaw muscle would be like finding a pin in a hay stack and you would damage a lot of good nerve along the way that could cause more issues. I'm not sure about the ptosis because my daughter only has the wink but taking something out of the thigh to fix it sound a little extreme expecially if her eye sight isn't effected.

    Hope this helps and good luck:)
  • Dear all, I amnew to this Share. I am mum of a 3yr girl who is diagnosed with Turner Symdrome during my pregnancy amio test at 20weeks. It had been hard for me & my hubby that was my 1st pregnancy but we managed to pull thru it. Tks god our girl was born healthy (though we know complications might surface in future). At 1 mth old she was diagnosed moderate MGJW ptosis on her left eye. Her eyesight & development is normal so we followup with half yrly review so far. He condition seems to hv improve a little over time but Lately I notice she had mild interim squint & the opthalmologist think it could due to her weaker muscle of the left eye. She thinks surgery might be required when she's around 5 to correct all these issues. I wasn't too comfortable on the idea of " destroying her muscle" to eliminate MGJW then abstract something fm her thigh to fix the ptosis etc... Are there other alternatives that you hv heard or done? Btw, I am from Singapore & there is no insurance to cover her congenital issues that make whatever she is facing a big financial burden for us. But we love her so much that we will do every thing we could to help her live a happy healthy life. :smile:
  • In reply to StacyNewman1981:

    Hi StacyNewman1981 -

    You sound like a wonderful and loving mother. I too was born with MGJWS, and had surgery at age 4 with very good results. I am now 31 and married with 4 children. It is true that when eating, the jaw wink will be less noticeable when smaller bites are taken. I haven't noticed that chewing on the opposite of the affected side helps though.

    As a parent, I wouldn't worry about your daughter's condition too much. I had a perfectly normal childhood and only remember being teased by the bully kids once in a great while in school if they happened to notice my jaw wink. Other than that your daughter may get a few questions every now and then from other curious children. For the most part MGJWS is one of the more less severe types of eye abnormalities. Other lazy eye problems such as crossed eyes may be more difficult to fix with surgery.
  • Hi all,

    I am a married mother of 4 who knows first hand about MGJW Syndrom. I am 31 years old, and was born with ptosis of the right eye and a jaw wink. At age 4, I underwent surgery, and still have memories of being in the hospital. My surgery was successful and I had to wear an eye patch on my left eye in kindergarten to allow my right eye to strengthen.

    I still have the jaw-wink but the ptosis is not really noticeable unless I am really tired or something. When I'm sleeping my eyelid always drifts about half way open, but this has never interfered with tear production. I have struggled with being self conscious my whole life (especially in school) because of how my eyelid moves up and down when I laugh or eat and drink. I have learned how to control it for the most part, and I don't think anyone notices. It's more or less something that I have had to get over.

    I have read many of the stories posted about mothers who have children with MGJW, and if it's any consolation, it seems as though the outcomes from this surgery are very successful. My surgery was done back in 1984, with very good results. Because I had surgery young, I did not suffer any adverse effects (e.g. vision loss, astigmatism).
  • My six week old daughter Josalynn was recently diagnosed with MGJWS. I've done a lot of research and we've already been to one ophthalmologist and are getting a second opinion at Texas childrens hospital. The condition is rare but I've met a few adults with the condition and they've given me some very useful advice on helping your child cope in public. First you should socialize your child as normal. As mothers we want to protect our young but putting them in a bubble of ignorance can be more harmful than gawkers and curious strangers. Talk to your child about the syndrome when they are old enough to understand and maybe let them see what it looks like when they eat in front of a mirror. As they grow older I've heard that it helps if they chew on the unaffected side and it is less noticeable if they chew smaller bites. I hope this post helps some other mother out there. I don't know what caused this phenomenon but I thank God daily for the gift of my daughter and I will do everything possible to let her know just how rare and precious she is inside and out.
  • Welcome to Share. I am so glad that you were able to find a doctor that was so helpful. Thank you for sharing your story with all of us. Hope to see you around.
    Ellen
  • For those of you in Los Angeles, I would highly recommend visiting Anne E Simon in Torrance, California. She immediately diagnosed our 7 month old daughter with Marcus Gunn Jaw Wink after our pediatrician could provide no explanation other than to see a specialist. Her diagnosis was made within minutes even in a very mild case (thankfully). She runs a private practice and was excellent.

    It seems that in many areas it is difficult to find doctors knowledgeable on this topic and I thought it was worth providing the resource. I know it is scary to have your baby do anything abnormal. Our daughter is now 13 months and appears normal -- we go in next month for another eye check and we will pray that the condition has not deteriorated in anyway.

    Many thanks for the adults out there who have shared their stories to give us parents guidance on this very under-known condition.
  • Hi Rose,
    Would not like to give you advice as i have never considered the surgery option,in fact didn`t even know it existed before the wonders of google.
    I am 43 years old and have had this condition all of my life.I believe it was most noticeable when i was a baby and feeding on a bottle,i think my parents thought the winking was cute.I remember having my "good" eye covered briefly to `make the other one work`and it must have done the trick because i didn`t need glasses until i was 40 years old.(and only then for reading)I guess my case wasn`t too severe but i remember school photo`s were a bit hit and miss because i didn`t like it if you could see my "lazy eye."I think the winking has lessoned over time but it`s hard to say because i can`t feel it or tell i am doing it.Other people are usually too polite to mention it,and i was never bullied at school.I tend to explain it if i`m eating with someone new and i catch them looking,otherwise i tend to forget or just lower my eyes as i chew.
    I can`t advise on any individual cases,i can just tell you my experience and that this has had no adverse effect on my life-other than i think the eye is just a little dry and i have no overspill of tears when i cry.My eyes fill up but no tears on the cheek,i must have saved myself a fortune in waterproof mascara!
    I hope this helps.I have never contributed to a forum in my life but this is so rare,especially,it seems in Britain,it seemed like the responsible thing to do. Good Luck and good health. :smile:
  • Rose_79

    Welcome to Share. I am sorry that you are going through something so scary with your daughter. Most of our moms are based in the US but there are some UK moms on here and I hope they will jump in soon. In the meantime, I wanted to let you know that I was thinking about you.

    Take care and we hope to hear more about you and your daughter soon.
    Ellen
  • Hi there everyone. My daughter is now 9 weeks old and she has been diagnosed with MGJW and Ptosis and that she may need surgery to correct it. Hearing this was heartbreaking, my husband and I couldn't believe this is happening to us and our little baby, we are so worried for her now with the operation and her future. This is all I can think about all day and I am trying my very best to stay positive. Hearing about other parents experiences on this forum really helped.

    We live in the uk and she is being seen at moorfields eye hospital in london. We are waiting for a follow up appointment with the surgeon who will give us his recommendations on the best way forward.

    The doctor that we saw said to prevent her loosing sight in her eye she will probably have to have an operation where her eye is permanently open and therefore she will never be able to blink again. My husband and I are not happy with this option and we would rather go down the route of fixing the ptosis and shortening the muscle. The doctors said that shortening the eyelid muscle will make the MGJW worse.

    We are now waiting to discuss this further with the surgeon who will hopefully be able to give us more information and the best way forward.

    Most of the posts on this site are from parents/people based in the USA and the Philadelphia hospital has been mentioned as one of the best place in the USA.

    This condition is very rare but I was hoping to hear from parents of children based in the UK who have gone through ptosis/mgjw treatment in the UK, where they had the treatment and the outcome of the treatment. Please can someone get in touch my email address is rose_79@hotmail.co.uk. Thank you.
  • In reply to Danielle H:

    Hi Danielle
    I am 47 years now with a MGJW and ptosis. (SO most of times it looks as if my eye os closed all the time, which have made people wonder if I am blind etc) I know it can be pretty burdensome being a teenager with this diagnosis. The problem is it is not so severe so you meet a lot of curious folks. Which makes you annoyed and embarressed. I don't know if you have ptosis as well because to my opinion it is the ptosis that is most visible????
    I did not either have surgery and today I am very happy with that. You must learn to accept yourself and to trust that you are an important and wonderful individual with a relatively small issue. You will discover that it is no hindrance for having friends, boyfriends, getting married and having children. Have patience and you will see that quite soon when your environment gets more mature it will not be the same anymore. Trust me :smile:
  • Hi Cristin,

    This is Barbara from the March of Dimes. I’m so sorry that you are facing so many challenges. It is good that you have come to Share – there are others who know what you are going through. I hope that soon they will jump on and offer their advice. In the meantime, I can tell you that Marcus Gunn Jaw Winking Syndrome is a rare disease, with no known, definitive cause. Here is a link to the National Organization for Rare Diseases which discusses this syndrome:
    http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Marcus%20Gunn%20Phenomenon. In a separate email, I will send you more information with other links that will help you understand your son’s condition.

    In addition, I suggest that you keep a running list of your questions and concerns, and when you go to see your son’s specialist you will have all of the questions ready.

    I hope this information is helpful to you.

    Best wishes,

    Barbara

    Health Education Specialist

    Pregnancy and Newborn Health Education Center
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