Marcus Gunn

[happy678]

My son is now 13years old. He has Marcus Gun in one eye. He has had a total off 5 operations to try and improve the condition, none off thease have made any difference, in my opioion it has only made the eye worse.He also wore patches for a number of years, which when i look back, they would never have made any difference, as it is not a lazy eye. He visited 4 different hospitals, all were of the same opioion that there is not much that can be done if anything. i no longer take him to the hospital and have not done for 3 yrs, as i do not feel that anything can be done.But in those 3 yrs i would be intrested to know if any one has had any success.
Thankyou,
Wendy.


This discussion is related to Marcus Gunn   Ptosis.

[Thellys]

Hi Mels456. I am 32 yo and I'm sorry to inform you that it won't really go away. I learned about it in my teens, and was never teased for it back in school. The only thing that I can tell you is that you learn to live with it. You learn to masquerade it, by not chewing too wide, also if you look down to your plate your eye won't open as much. I know this is a pain in the ***, but if you want to avoid questions or stares, you have to do these things. After a while these actions become automatic. I have always done it myself, but as I get older, I care less and I have been telling people right away so that I won't have to masquerade it. I just want to eat looking straight ahead without having to hide. Been doing that for a while and it feels great. People get used to it. If they stare too long at you, you just ask them if they want to know what it is all about, and then you patiently explain to them. We should be thankful, there are much worse symdromes out there, a lot of people would exchange syndromes with us in the "blink of an eye" ;)
I hope this helps you,

Greetings from Brazil,

Thellys

P.S.: I tried to reply to your comment but I couldn't figure it out.

[Mels456]

Hi, I'm 15 and I have just recently learned what the condition of my eye was called.. Marcus Gunn. My parents have took me to a doctor when I was baby when they first noticed it and said it would go away with age. As I grew I hoped year after year that it would go away because of the laughter and stares I would receive in school. I now know that it will never go away. My point is, how did you become so okay with this particular "disorder?". I don't know exactly what to call it. I don't want to be special, and I don't want to be looked at in a weird way every single time I eat.

[Thellys]

Hi Mels456. I am 32 yo and I'm sorry to inform you that it won't really go away. I learned about it in my teens, and was never teased for it back in school. The only thing that I can tell you is that you learn to live with it. You learn to masquerade it, by not chewing too wide, also if you look down to your plate your eye won't open as much. I know this is a pain in the ***, but if you want to avoid questions or stares, you have to do these things. After a while these actions become automatic. I have always done it myself, but as I get older, I care less and I have been telling people right away so that I won't have to masquerade it. I just want to eat looking straight ahead without having to hide. Been doing that for a while and it feels great. People get used to it. If they stare too long at you, you just ask them if they want to know what it is all about, and then you patiently explain to them. We should be thankful, there are much worse symdromes out there, a lot of people would exchange syndromes with us in the "blink of an eye" ;)
I hope this helps you,

Greetings from Brazil,

Thellys

[NHackett]

Hey, no idea if people are still interested in this but recently I was asked to write about myself, like all of myself, for college and I started to get onto what I wanted to be when I was older and it asked for a reason... (I want to be a peadiatric nurse) So I felt I was able to share about my own marcus gunn's. This then got my mum started on others who had it. Now... I always felt pretty... Alone I guess you could call it with this. So while my mum was telling me how unique I was, for the past hour, I have been trying to find someone, anyone with this that I could talk to... Maybe understand a little more.

Well, I'm seventeen and, obviously, I was diagnosed at birth with Marcus Gunn's. I've had two operations, the first when I was four and this consisted of taking a ligiment from my leg (just above and to the side of my knee) and attaching it to the muscles of my eyelid so that my eye actually stayed open a little better, this operation (from my knowledge) is called a brown suspension. The second operation was when I was eight and this was actually to lower my eyelid because it was meant to relax after my first operation but it didn't.

I was passed from hospital to hospital for them all to tell me the same thing and then argue over what to do about it. I missed a lot of school when I was younger due to this and of course I got the questions 'what's wrong with your eye' but as I got older I learnt to style my hair so that it doesn't show as much and when i need to look down (because it stays up and open) my hair falls in front of my face. No-one really notices anymore unless one of my friends that I've known since I was younger says something about it.

I guess there's not much else to say... But I'm really interested if anyone else has this condition, or has a family mem. with it :)

XX

[AGahrmann]

There are support groups for families and individuals who are afflicted with the Marcus Gunn Syndrome (Marcus Gunn Phenomenon).  

http://marcusgunn.org

This non-profit group is working together to educate and work toward a solution.

All the best,
Allison Gahrmann, Founder

[jkim0107]

Does he have just jaw-winking symptom or does he also have ptosis?

I am currently 20 years old and have the Marcus-Gunn Jaw-Winking Syndrome (with severe Ptosis) but was luckily diagnosed at an early age. My ptosis causes my eyelid to cover my entire eye when I am at rest so it looks as if I have only one eye open.

***What you DO have to watch out for is the possibility of amblyopia (lazy eye). This is not at all congenital. It is something that may manifest if ptosis is not rectified.

Ptosis, where the eyelid obscures the vision by drooping over the pupil will, in turn, alert the brain to "shut off and disregard" the images from the eye with the condition. This may occur even if the eyelid droops to cover only a portion of the iris and/or pupil. The child will then start to use only one eye in seeing. If untreated, loss of vision and depth perception may occur. You should continue to have your son use the eyepatch for practice. Studies show that just 2 hours of wearing and eyepatch and doing near and far excercises may help the vision.

Neglecting to exercise can lead to blurry vision, astigmatism, and increased sensitivity to light and wind on the affected eye.

Studies indicate, however, that some patients with this syndrome compensate the ptosis with the jaw-winking symptom in what is called a "habitual pose".

This is relevant to what I experienced.

When i was younger, my ptosis was very obvious. However, my parents made me practice excercise opening and closing the eye with the ptosis everyday. As the years passed by, I began to learn to subtly position my jaw so that my ptosis and the jaw-winking syndrome will not show.

My heart goes out to all the youths who have this condition because kids are very cruel sometimes (even if it is unintentional).

I was very sensitive about my condition and was teased many times. In fact, I was teased so much that I cried at home every day.

This is why I stress that parents ALWAYS be supportive and EXPRESSLY VOICE how beautiful their kids are. If my parents had done any less, I honestly do not know where I might be right now.

Another thing I would stress is the importance of strongly encouraging practice excercises in controlling the ptosis by using the jaw-winking syndrome to their advantage.

I have come a long way. I remember, the first thing almost everyone would ask me when they first met me was "what's wrong with your eye?"

By the time I was in high school, I had learned to control my ptosis to a pretty good degree and I think I heard this question from maybe only two people.

After high school, no one has ever asked me this.

I have tamed my ptosis and syndrome through practice.
Though I still have to concentrate and make an effort to keep my eye open and blink in sync with the unaffected eye, it has become easier. Though it is not the same as having normal involuntary blinking, controlling my ptosis with the jaw-winking syndrome and masking the two have become almost second nature.

If ptosis can be controlled with the syndrome, there should not be vision loss (as the drooping lid will be controlled and will not obscure the vision). In addition, being able to control it may make it a better alternative to surgery. Surgery may prove benefitial to those patients who have just the Marcus Gunn syndrome...but for those who have this syndrome as well as ptosis, surgery will not be effective. At least not yet....

Below are some pictures. You can't even tell. Not even the jaw-winking. I pretty much have it under control, and all it took was several years of practice (WHICH SHOULD START AT A YOUNG AGE. IT IS NEVER TOO EARLY) Remember to help your children practice exercising control because there IS something they can do about it. I felt ugly all throughout my adolescent and middle school years and never once thought I was beautiful. However, my parents never failed to encourage me and love me, and as I began to see the progress I was making in controlling my condition, that was when I began to see what my parents had seen in me all along.

I wish you all the best of luck. If you have any questions or just need someone to talk to, you can email me at ***@**** at any time. I would be more than happy to help or maybe even listen.

http://img.photobucket.com/albums/v11/licentious_on3/Photo-0032.jpg
http://img.photobucket.com/albums/v11/licentious_on3/l_bc6a1532dfc49d52d155b4cb709ff494.jpg
http://img.photobucket.com/albums/v11/licentious_on3/mixxxxxx-%20clean%20out%20mailbox/l_bfdab1600b917027ec02bb784eb8cb0d.jpg

I dont want to dig out all my old photo albums so I cannot upload a picture of me with the regular ptosis (it is severe and when I do not control it, it droops over the entire eyelid) but I do have my preschool picture framed. In this picture, I have already been practicing controlling the jaw-winking syndrome to remedy a bit of my ptosis so the eyelid is only partially drooping.

http://img.photobucket.com/albums/v11/licentious_on3/mixxxxxx-%20clean%20out%20mailbox/IMG.jpg

Most habitual posings use the eyebrow muscle to also aid in rectifying the ptosis in addition to adjusting the jaw. This is what I had learned to do. You can tell in the picture that the eyebrow for the eye with the ptosis is a bit more raised. You cannot discern the difference in my recent pictures because I have shaped my eyebrows to look even.

[vlw115]

Our son is now 6 yo with Marcus-Gunn jaw winking.  He's completely fine, just done with kindergarden.  His friends started noticing his winking during lunch and asked him about it.  He told them it's just something that he was born with.  That appeased his other young friends and it didn't come up again.  He's never been teased and has lots of friends.  For the past year, he's become more aware of it himself.  We bought children's books to read to him about how people are different from each other.  That helped him to understand that we're all different in some way or another.

The problem with the surgery is that once they raise the eyelid to ease the droopy lid, the winking component still remains and looks worse as there is more scleral show if the lid is higher at rest.  Another option we were presented with and didn't take is to remove the muscle from the eyelid, which would just make things obviously worse.  Our ophthalmologist also proposed that if our son wears glasses (no prescription, just a zero lens and nice frame), that this will detract attention from his eye.  We may go for that at some point if he becomes more self-conscious.

If you look up Elizabeth Engle, M.D. on the internet, you will find the only researcher in this country (that we could find after several months of searching) looking into the genetics of Marcus-Gunn jaw winking and other congenital eye problems.  She's a pediatric neurogeneticist at Boston Children's Hospital, part of Harvard University.  If you contact her lab, they may be interested in obtaining DNA samples (saliva) which could help further the understanding and development of this phenomenon.  Who knows, perhaps in years to come there will be a treatment worthwhile? The website is very interesting.

In the meantime, I think it's really important not to put our anxieties upon our children, but rather teach them to be proud of themselves and who they are.  

Best, VLW

[happy678]

Thankyou so much for your advice, i am trying as i have always done to help my son, feel comfortable with his condition. I feel it would be of great benefit if he had any questions to ask someone who actually knows the answers, and can calm his fears and worries. Would you be kind enough for me and my son to email you from time to time. We are from the Stoke area.
Regards,
Happy678

[Jaw27]

I am 27 and have marcus gunn. I can;t help you about if any new surgery have become avaliable but as we are so few with MG i would not think that any medical organisations would benefit from research so i guess they don't.

But what i can do is telling you my story and hope that helps. I too wanted an operation in my teens but were told by my doctor that the chances for success were so slim that he suggested not to go ahead with it. How am I happy about that today. I have learned to live with it and now think that it is part of making me special. I was teased on a few occations but to be honest i think that during my teens I made a bigger problem out of myself than others!

It never kept me from experiencing any of the things others do! I had "loads" of girlfriends and they never had any problems with it. I always told them about my eye early on. So any suggestions would be to make sure your son knows about his eye and what it is so any one interested or not can understand how special he is (1:1500000 i believe!)

Jaw