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10/23/2011 10:13 AM

Some insight for everyone wondering about surgery

selfconsciousMGKid
selfconsciousMGKidPosts: 9
New Member

So for along time I have been digging around hoping to find research documents and different types of surgery to cure MGJW or at least correct it. Here is what I have learned...

Marcus Gunn Jaw Wink is primarily caused by a faulty gene. It is autosomal, so this means only 1 parent needs to have the faulty gene. It also has incomplete penetrance... this means that the child can carry the allele without showing symptoms his whole life, but still pass it down.

At first I thought that it was a nerve-muscle disorder very close to the face or eye, but that is not the case at all. People with MGJW have a fused nerve (that is the theory) that makes the eyelid move when the brain gives certain orders to move your jaw, or sucking. This is known as the 7th cranial nerve, or facial nerve. Further research has me to assume that to correct the problem PROPERLY, rather than some bogus mutilation of your face, they would need to cut open a small incision in your skull, and operate close to your brain stem. This would involve neurosurgery and neuroregeneration... technology that is still in its infancy. On top of this, the surgery would still be considered cosmetic, so most insurance wouldn't pay a dime. So your looking at over $250,000 on a surgery that to my knowledge hasnt even been thought of yet. Unless of course being a guinna pig for an experimental surgery would be free.

MGJW is normally associated with ptosis and other eye conditions. It is rare and considered "lucky" to JUST have the jaw wink. I have talk to some of the best surgeons in the world about MGJW and they have told me that the primary option of bilateral levator excision and frontalis brow suspension is not worth it if you do not have ptosis.

The best advice I can give to parents worrying about their child and other people around my age with MGJW, is just to get use to it, try and minimize the jaw wink. It is an appearance thing, so try and work on other things. If you look attractive and you have a great personality... and your eye does some weird stuff while your eating on a date... or taking a shot(this happens to me alot lol) 9 times out of 10 the person or people wont care to much... Because low and behold, most people have something they are very self conscious about themselves.

Also we have to realize that their are probably only around a few thousand people with this condition... so unless one of us or someone concerned about the condition puts millions of dollars into research for it, we wont see any progress on a surgery. Because from a business perspective, why would you invest $ trying to cure something with a consumer basis of under 10,000 people... thats like investing in water on the moon.

It may sound science-fictiony... but I wouldn't even look into fixing your jaw wink (if you DONT have ptosis or any other problem with your eyes)until nano-technology becomes more prominent in society.

Also, this has made me abit disappointed as the communication with surgeons was only recently, shutting down my hopes of getting it fixed. (although i was never able to get hold of a neurosurgeon familiar with MGJW)

So if anyone would like to share stories, or tips, or even ask for advice. Feel free to text me @ 269-409-1018

You can ask me or tell me anything!

*If you believe any of this information is incorrect, please email me right away, I dont want to be telling people wrong information! Thanks*

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10/27/2011 11:07 AM
LissaP318
Posts: 10
New Member

My daughter is 15 months old and has MGJW along with ptosis in one eye. We had the ptosis corrected but did nothing with MGJW. She actually has MGJW in both eyes but it is much more pronounced in her right eye. We wouldnt change a thing about her! We absolutley love the little things she does with her eyes. We hope to teach her to embrace it and that its what makes her who she is. As a parents you dont want your child to ever be made fun of for things so of course I worry about that. But like you said everyone has something that bothers them about themselves. I think you just have to learn to accept and embrace things and remember that it could always be something much worse.

01/31/2012 12:22 AM
MotherLhr
Posts: 4
New Member

dear consiousMGkid, its good to hear your positive attitude. I am a mother of a 3 yr old, who has congenital MGJW + ptosis. doctors hav recommended surgery at age 5. I hope it will get better after surgery.

03/01/2012 03:16 PM
Avences
Avences  
Posts: 3
Member

Hi..

I am alma and I am neww to this site..

So MGJW is caused by a faulty gene? Its dissapointing that not a lot of ppl know about this..

Only ppl living with it..


05/05/2012 05:56 PM
lifequest
Posts: 2
New Member

I know. That's one of the worst parts. Tried to ask the Oprah show to showcase it once, but that didn't fly. I have a longing to meet with or converse with "my people", as I've never met anyone else with it. I think that support groups are at least a good start.

05/23/2012 08:03 AM
Cristina016
Posts: 3
New Member

I deff know the feeling of never meeting anyone. Rather, until recently I came into contact for the first time with someone that has it but for me I don't fully count it just bassed on the fact that he had surgery so instead it looks like one eye never shuts. Unless thats how I look in person. I'm still self concious about it like anyone else would be but I work around it. If I chew I look down, if I speak I blink as much as possible, if I open my mouth I widen my other eye,and I avoid looking too up instead I lift my head. You just learn to work it the way you would work around a broken arm or something. I refuse to be a guinie pig for any kind or surgery. On a different note i'm extremely thrilled to see theres a group of people like me for one and I am not alone. Smile

06/21/2012 02:08 PM
IDDA
IDDAPosts: 1
New Member

Hello all! Brand new to the site Smile

I haven't struggled with being self-conscious about my MGJW since I was a child. My parents explained to me that it was God's way of making me “awesome”. They basically instilled enough confidence in me that I didn't care about what other kids said about my eye. As you grow older, (through middle school-highschool), kids/young adults make less of a deal about it. I can remember a few instances in high school where someone asked about my eye….. and that was all that was done, asking. So when they'd ask, I'd move my jaw to show them what the deal was. Some think it's cool, some people were weirded out by it – no biggie. I can remember one time where I was “made fun of” as a freshman in high school from a senior. I blew it off which made him look like an asshat – no biggie. As an adult, I'm occasionally asked about it by other adults. I just show them how it works and most can't get enough of it, bizarre really.

With that said, it's hard for me to relate to anyone that is self-conscious about it. However, I would really encourage new parents that had a child with MGJW to not have surgery, UNLESS it is to correct severe ptosis. Why risk permanent damage to your children's eyes to protect them from some teasing? Instead, instill self confidence and pride about what makes them special.

I'm sure most of you who have MGJW can relate to this; however, maybe it's good info for new parents of children with MGJW. Wearing eye glasses really helps to hide my ptosis. I wear them daily now (instead of contacts because of an astigmatism) and have had less questions about my eye.

Anyways, it's nice to know there are more people like me out there! Hopefully those of you who are struggling with being self-conscious about your MGJW learn ways to cope with it. I hate to think anyone has let this unique syndrome bother them for a lifetime. As for parents with kids that have MGJW, keep pumping sunshine to your kids. Taking them to the doctor for possible surgery (in my opinion) is irresponsible (unless it's to correct severe ptosis) as it leads your kids to believe something is wrong with them when in reality, we all were born with less than desirable attribute(s) of some kind. Unfortunately, for those of us born with MGJW, it's nearly impossible to hide (like a birth mark or whatever have you).

Good luck to everyone!

Cheers ~ Matt


07/15/2012 02:26 PM
Noxy
Posts: 4
New Member

That's actually a huge surprise to me. I always thought that MGJW was due to a malformation and has absolutely nothing to do with genes.

But after some lectures on the net, I learn that it's rare that the gene manifests itself but it certainly seems that it runs in family while being dormant. The weird thing is that even if you and your spouse have absolutely no family record, you still can have a child with MGJW.

As you say, selfconsciousMGKid, the only permanent solution for it is to expect leaps forward in the coming decades of nanotechnology or other genetic engineering technologies.

While I have a one year old child with mild MGJW, I sure hope that my descendants won't suffer from heavier effect of it.

Post edited by: Noxy, at: 07/15/2012 11:40 PM


09/11/2012 10:38 AM
jinsi
 
Posts: 5
New Member

Our son Allen was born in March 2010 and we are blessed by having him in our life. His suffers with the Marcus Gunn Winking Syndrome from Birth and associated Bilateral Ptosis. During the first few months we found it amusing that Allen used to wink his eyes while having his frequent feeds but never thought it would be a medical condition. Even though we made frequent visits to the pediatrician for the infant check up's, the doctor never observed this phenomenon nor we ever thought that our son would have this syndrome which we have never heard about or come across. It was in his 4th month when we asked our pediatrician that she noticed he had bilateral Ptosis.

We consulted an Pediatric Ophthalmologist in Baltimore who educated us about Allen's rare case of the Winking syndrome and Bilateral Ptosis. Allen did not have a severe condition and a surgery was hence ruled out by the doctor. We consulted multiple ophthalmologists at the point of time and most were of the same opinion that since his case was moderate severity (eyelids not shadowing the pupil), a surgery could be delayed until he is old enough. Though there were few who were more concerned with the money they could generate with a quick surgery. For two years we were constantly in consultation with the ophthalmologist in Baltimore and we were pretty happy with Allen's progress. Allen learnt to raise his chin a bit to compensate his vision but he tends to keep his jaw open/moving to keep his eyelids up (Marcus Gunn syndrome). He has a bit of astigmatism which is in tolerable limits as of now. He does not need glasses for now but may need them at a later point of time. Based on his day today activities, we could say he is just like a normal child and did not have any sight related issues. He is very observing and he finds out even the minutest detail/difference which we fail to observe.

Here is where our problem starts. Six months ago, we had to relocate as a family from Baltimore, MD to Louisville, Kentucky. And as a result we had to consult a new ophthalmologist nearby. We had his second appointment with the new doctor recently which is after 6 months we relocated and Allen being not comfortable around strangers did not do well on the vision tests the doc gave him. The Doc closed Allens right eye and did a vision test of the left by asking him to compare pictures. Based on similar tests, the doctor suggested that his left eye vision is deteriorating and he needs patching on his right eye 2 hours daily to improve his left eye vision and may need surgery when is he 3 years old. I knew Allen was struck by anxiety due to a stranger's test and when i brought the same test home and asked Allen to perform the compares after patching his right eye, he did exceedingly well. The doctor also advised that to improve his left eye vision we should patch his riht eye for 2 hours daily. Allen being an active kid hates to put a patch on his eye. He immediately pulls it off since it's something which prevents him from a full vision.

So I really want to question the Doctor's idea to patch the eye of a 2 and a 1/2 year kid who do not like much restrictions being imposed upon him and its difficult to make them understand at this age. After this visit we really got tensed with the doctor's feedback and we are pretty sure the doc is wrong with his findings since we closely observe him daily with his activities. But we being no expert are looking for a second opinion now on to confirm the doc's findings. And I pray to God that he is absolutely wrong.

We have not yet decided on whether we will have a surgery for Allen and after reading the various experiences in the forum, we really feel if a surgery is really worth all the side effects the surgery and pain it brings along with it unless it would take his vision away? Also I want to see if there is a way we can search reliable doctors in a given location. Good reliable Ophthalmologists are hard to find. I am looking for suggestions in and around the state of Kentucky where we can take Allen for second opinion. Would you have any suggestion for finding the doctors? I already checked sites like health grades and vitals but not sure whom to approach.

I feel that conditions like Bilateral Ptosis are rare conditions and only a doctor who has examined a similar condition before could provide a best possible advise. I really feel offended when the docs bring in the interns and show Allen as a specimen, something which they do not see in their practicing career often. And it also be noted that a suggestion which worked for one patient will also be an ideal solution for another patient suffering from the same issue. The right resolution for these kind of medical conditions also would also depend on the emotional, spiritual and family preferences.

In closing, want to quote from 2 Corinthians 12:9 “My grace is sufficient for you, for My strength is made perfect in weakness. Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me."

I really look forward to getting some enriching feedbacks from you folks before we can decide on what would be the best in Allen's case.


03/07/2013 10:58 AM
MGJWmommy
Posts: 3
New Member

We had to patch our sons left eye to force the use of his weak eye. He was about 10months old and would promptly remove the patch. His ptosis was blocking the pupil and we knew surgery was in the near future we were just trying to delay it. We had to resort to medicinally patching by using atropine once a week in the good eye. It would make that eye blurry and our son would manipulate his head or slide his jaw forward to open his weak eye further. But by the time he was 16m we moved forward with the surgery. We noticed about 6 months ago he was sliding his jaw forward again and begun to take steps to move forward with his next surgery. Sad the lid needs to be raised just a bit more and hopefully he will be able to better use his eye. I understand your frustration with "being a specimen." I have had very loud arguments with the insurance company who wants us to see their doctors because they can "treat ptosis" while ignoring my pleas that he has the compounding factor of MGJW and is a small child - not a 60yr old woman looking for a cosmetic procedure (which is plastered all over the doctors' webpages).

Good luck!

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