eye lids not closing

Posted by: James

eye lids not closing - 11/15/00 06:12 AM

the eye lid surgery was necessary because the eye lids would not completely close,therefore leaving the eye subject to infection and getting skin flakes or having eyes dry out & get stuck .Slowly your eye lids turn outward more and doesnot touch the eye and spread your tears and lube your eye properly.As a result your eye can get damaged. I am 52 you may not need this till you get older. Meanwhile you (natural tears )to lube your eyes.Hope this doesnot scare you or worry you . The bad part is that the Plastic surgeon said other doctors who have preformed this surgery on ich people it last for about 5 years. My surgeon said 16 peoplein the USA have had this done this year.Well enough for now If you want my info email me at fergi023@aol.com.
james
Posted by: OOske

Re: eye lids not closing - 11/16/00 08:19 AM

hello all

my daughter has also problems with her eyes , they never close even in night when she sleeps.
She had an operation 5 years ago, it take 4 operations to get better, 1 eye by 1 and also 1 on the upside and 1 on the bottom of her eyes .
That helps her alot for 4 years and now she is a little bigger and the problem is back.
Somethimes when she wake up her eyes our inside out and it's diffecould to put it good again.
So i hope that it will not be an operation again because 5 years is not long and every 5 years for the rest of your live an operation , i hope not.
Is anyone having the same problem or will this ends when she is grownup?
Please let me know.
Bye bye Ichtje
Posted by: Solomon Rumicha

Re: eye lids not closing - 11/16/00 02:18 PM

I think the eye closing problem is very common to people who has Lamellar. My son had difficulty closing his eyes since the day he was born. When he was a baby we used to use wet gauze over his eyelid and cover his eyes the whole night. After a while right before he goes to bed we moisten his face and carefully put Aquaphore or Vasline around his eyes and put PM Refresher eye ointment in his eyes which helps him moisten through out the night. It seem helping him close his eyes at night. His doctor even commented that his eye looks very good. Even though my son is only 4 I think this method works very well for older people too. The other thing is moisten all around the forehead and push the skin down toward the eye in the form of massging.
Good Luck.
Posted by: Chandra

Re: eye lids not closing - 11/20/00 07:56 PM

I have Lamellar Ichthyosis and also have severe Ectropian (turned out eyelids). I have never had to have surgery on my lids as my eyelids stabilized right before I hit puberty (I'm now 28 years old). Every decade I go see Dr. John Wobig at the Casey Eye Institute at Oregon Health Sciences University in Portland. He is considered the best doctor on the west coast for performing surgery on patients with ectropian. I would suggest you contact him if you have any way of getting here to see him. As for me, I do nothing special with my eyes other than keep the lids as clean as possible. It is also very important to wear some sort of eyeglasses with UV Ray protection as having the retracted eyelids lets in a lot more light than someone without ectropian gets. This can cause future eye damage, so please, wear hats, or tinted glasses or sunglasses when outdoors!
Posted by: sing4joy

Re: eye lids not closing - 12/16/00 04:03 AM

I had a similar eye surgery done 3 years ago. An ocular plastic surgeon first tried a cheek lift to allow the skin to stretch up further. It worked a little bit, but not enough. Then he did a skin graph. He took skin from my arm (I had put heavy amounts of aquafor and glycolic acid on it for several months to make it smooth enough to be taken.) and added it to my lower eye lids. I didn't look so good for a few weeks, but everything healed fine and the doctors are very excited about how it turned out. I had to go to the specialist because the doctors where I live were scared to do this kind of surgery on someone who had ichthyosis.
Posted by: Laura Phillips

Re: eye lids not closing - 01/18/01 10:14 PM

I second what Solomon was describing, especially using some kind of night-time ointment (Refresh PM, Lacrilube, DuoLube, etc). Using an ointment at night makes a HUGE difference in my eyes (moderately severe ectropion all year round for me).

I felt like I consulted good eye surgeons for advice too, and the ones I spoke with really discouraged me from having the surgery to correct the ectropion because it would only be a temporary fix...and then I would need it again. And that every time I had the surgery, it would be less effective and last for a shorter period. They really stressed just managing it best I could with virtually the same regimen Solomon described.
Posted by: Chandra

Re: eye lids not closing - 02/07/01 05:57 PM

Yes, Dr. Wobig told me the same thing that Laura mentioned. As there is no way of knowing how long the benefits of the surgery will last, my doctor said that often when people start having the surgery performed, they end up being committed to having surgery on their eys throughout their lifetime. He too stressed that if you can take care of your eyes and avoid surgery, it's the best way to go.

I never thought of trying wet gauze. I'll have to do that. Thanks for the tip!
Posted by: sofia

Re: eye lids not closing - 03/16/01 05:37 AM

I hope some one can help me. I suffer from horrible, painful corneal abrasions that have completely made me neurotic with my eyes. The last one was in October. The Dr. performed a stromal puncture. She said this will help the cornea in tact better. She also put me on Muro tears which are horrible. It is made from NaCl (salt) they sting. But I must admit it moistens the eye for a while. I am horrified of getting another abrasion. I had also suffered one while I was in Philidelphia. If anyone has any suggestions please let me know.

[This message has been edited by sofia (edited March 16, 2001).]
Posted by: Laura Phillips

Re: eye lids not closing - 03/16/01 06:27 PM

Sofia,

Do you already use a night time ointment in your eyes when you sleep (like Refresh PM, DuoLube, etc)? I was having trouble with cornea changes about 10 years ago, before I started using a night time ointment every night.

I can't miss even a single night, or I really notice a difference (for the worse). So far, since I've been using ointment every night, my opthalmogolist has been happy that the cornea has looked normal.

Laura
Posted by: sofia

Re: eye lids not closing - 03/17/01 04:23 AM

Dear Laura,
My eye doctor recommended I use Aquaphor at night. This of course is a heavy petroleum cream. I put in the Muro tears and then use the jelly to keep my eyes shut at night. It has helped some but I am scared. I suffered alot with the last abrasion.
Posted by: Laura Phillips

Re: eye lids not closing - 03/19/01 09:28 PM

Sofia,

I know what you mean about Muro tears. My horse has a number of eye problems (uveitis and secondary glaucoma) and we use hypertonic saline ointment in his eye when he's having a uveitis flare up. I feel so badly, as I know it burns.

Maybe give a night time ointment a try---I don't think it could do anything to hurt (though maybe ask your opthalmologist first). I would think if you needed the Muro drops, put those in first...then put the ointment in before bed. For me personally, putting drops in and then coating the outside of my eye with Aquaphor would not do the same thing.

Also, maybe talk to your doctor again. You mentioned that the Muro tears moisten your eye for a little while...which makes me think that your eyes are dry, and you want moisture? (makes sense, the whole 'not closing completely when you sleep and getting dried out issue'). Again, what I know about hypertonic saline is only from treating my horse...but my understanding of hypertonic saline is that is draws moisture out of the eye, reducing inflammation (I think in the packaging, it talks about treating 'corneal edema'). I don't think your doctor has you using hypertonic saline as a moisturizer, but I could be totally wrong on this. You just might want to discuss it again with your doctor---why she has you using hypertonic saline and whether there's another product that you might also use if what you're really after is relief from dryness.

Hope that helps,
Laura
Posted by: Nikkster

Re: eye lids not closing - 03/22/01 04:23 AM

Sofia,

What is a stromal puncture? Is it some kind of surgery? What do they do? I too suffer from corneal abrasions because my eyes do not close all the way when I sleep. During the day, I use Refresh plus Tears. This is especially helpful during windy days, smoky rooms, or air conditioned environments.

At night, I use the same thing that Laura uses(Celuvisc Tears plus), but recently I started using a night time drop called GenTeal Lubricant Eye Gel. My ophthalmologist told me to try it out. You can get it at most drug stores, but I was able to find it at Walgreen's. It's very soothing and lasts most of the night. I think it works a lot better than Lacrilube, which comes out kinda thick and clumpy. GenTeal has worked pretty good for me for now. I am supposed to go back to the doctor every 6 months to make sure that nothing changes with my eyes.

Hope that helps.

Nikkster
Posted by: sofia

Re: eye lids not closing - 03/25/01 12:11 AM

Dearest Laura and Nikkster,

I have been using the Aquaphor to close the eye. Lately my eyes are drier and worsen at night. The abrasions are horrible because they are so painful. However, now I am using Muro ointment which seems to lesson the stinging and the irritation of the Muro tears. Nikkster, a stromal puncture is basically little holes being punctured in the white part of the eye. It helps keep the eye intact so that a corneal abrasion will not happen. Normally, if I feel the eyes very dry and painful it would inidicate an abrasion. Now if this happens the eye stays better in tact and makes me aware that more moisture is needed. It has helped. Discuss it with your doctor it you may need this. I just am trying anything to prevent this. The last abrasion which was in October was so bad, I was out of work for two days. It was extremely painful and horrible. I wish there was something else that could be done.

[This message has been edited by sofia (edited March 24, 2001).]