Posted by: sofia

Eyes - 11/04/03 03:28 AM

Well just to let my friends in the forum know I finally had to have eye surgery b/c of the slight ecotropin I suffered from in my lower lids. My doctor did a wonderful job but what an ordeal. She actually did a lift in the lower lids and put in a plug in the tear ducts. I suffered close to 8 corneal abrasions (3 right eye and 5 in the left). I am grateful that this surgery could be done and now in the process of re-cooperating but I am saddened that this had to happen. I suffered so much with the corneal abrasions. I am young, as the doctor put it but at least it may prevent the next corneal abrasion. Just to let you know in the forum, as much as we take care of our skin.. remember to take care of your eyes. They are so important.
Posted by: CHLUKE2003

Re: Eyes - 11/06/03 05:48 PM

i used to have excelent eyesight. i have the same condition as you, but i did not know it until i had my eyes examined for glasses a few years ago. i knew that people kept asking me what was wrong with my eyes. i never knew anything was wrong with them. none of the dermatologists i had ever been to told me it was a correctable condition. after 20 years of working in the sun and cataracts and the abrasions to my corneas, i no longer see well at all. i would be interested to know how well your operation went and if it was worth it. i do hope it helped you a lot.
Posted by: sofia

Re: Eyes - 11/07/03 05:02 AM

Well Chluka I honestly can say its better.
The Sunday last I suffered another corneal abrasion and I had surgery that Wed before. I was so upset. I thought all the pain and effor when down the drain than a miracle. Within four hours my abrasion had healed. After coming home from the emergency room at 3.30am. I woke up the next morning around 7.30am and I could open the eye. No sensitivity to the light and best of all I was not hurting. I think I made the right decision. I am lookin at my eyes, they are healing. I still have light bruises and the stiches still are settling in (which thank god will be removed by Tues Nov 11)but the eyes look moist and I donot have to constantly lubricate. I am glad. For the fear I had it was the best decision I could have made.

[This message has been edited by sofia (edited November 07, 2003).]
Posted by: Anonymous

Re: Eyes - 11/07/03 02:24 PM

I was just wondering, how do you get a corneal abrasion and is it generally only in lamellar ichthyosis?
Posted by: ShaunaJ

Re: Eyes - 11/07/03 07:23 PM

Ryley has had a few corneal abrasions. In fact she just missed 2 days of school from one. She couldn't even open her eye. Now she can but her eye is so red and looks blood shot I feel so bad for her. Ryley does have LI and slight ecotropin also. I know her doctor said it could be from the thick scales on her hand. When it is bright out her eyes water so she wipes them he thinks when doing this the thick lose scales scratch her cornea. I belive him on this because her hands get some thick hard scales and tight bands which also cause her hands to split way bad. I have thought of having the surgery but decided to leave it until she is old enough to make up her own mind. Till then we try and keep sunglass on to help block the sun so her eyes won't water as much. She also has to wear glasses now to help her see so these make it so she doesn't rub her eyes as much also. Sofia did insurance cover this or did they try and say it was cosmetic?

Shauna Johnson
Posted by: CHLUKE2003

Re: Eyes - 11/07/03 09:50 PM

i am sure there are different ways each person gets the abrasions(which are microscopic) for me it is because my lower eyelids droop. the doctor told me this caused my eyes to dry out, which i do notice because they start to burn a little. the rubbing of the dry eyelids against the dry eyes causes the abrasions. i used drops at night and sometimes the gel but i do not really like the gel too much as it blurs my vision until it totally melts or what ever it does. my eyes tear a lot also during the day. i wear sunglasses everywhere. i wear yellow ones indoors because florescent lights bother me a lot.
i am very sensitive to light as i am sure many of the others at this site are. in fact if i close my eyes and someone shines a flashlight on a part of my face i can usually tell them where it is shining because i can feel it, even with blinders on.
ps. i buy really good sunglasses. they make a real difference. i used to wear cheap ones. i have found that the maui jim glasses which are made of the same material as the astronauts visors are made of, work great. i have the titanium flexible frames and they are so light i often forget i have them on and they don't hurt the bridge of my nose where the rub. unfortunately they are quite pricey.
Posted by: Chandra

Re: Eyes - 11/08/03 05:08 PM

Thanks for the tip on glasses, I need a new pair of bifocals and sunglasses, so I will remember to look for Titanium frames and the type you mentioned for sun glasses.

My 2 cents on the corneal abrasion source is not only having ectropian, but also if your eyes can't stay moist enough. The abrasions I have are from incidences where the only way I could have avoided the abrasion was if I could close my eyelids all the way (and I can't). However, my tear ducts are overactive, and my eyes roll back to keep them moist at night, so eye moisture is never a problem, thus I've never gotten an abrasion without knowing exactly what caused it.

I do strongly recommend that safety goggles are important for everyone, but ESPECIALLY for folks who can't close their eyelids all the way or have ectropian! Wearing at minimum glass if not safety goggles just when you're cleaning house is a good idea so that if your face is close up to where you're spraying a cleaner, the mist doesn't get in your eyes. I took a craft workshop at the local university craft center. Some people were doing a Raku firing (pottery) and thus there were tiny tiny metal particles floating in the smoke and that's how I got the worst of the corneal abrasions I have because the goobers kept the dang door open and let all that smoke into the building.
Posted by: sofia

Re: Eyes - 12/21/03 08:49 PM

I am sorry I did not respond sooner. I first got a corneal abrasion about 5 years ago and it was so painful. By the time I had the surgery I had suffered almost 10 abrasions 4 in the left severe and 6 on the right. They were so painful and would incapacitate me for at least 2-3 days. I had to be put on antibiotics for a week and eventually the redness and the light sensitivity would go away. A corneal abrasion is a scratch in the eye. Normally a person can get it by getting something in the eye. I on the other hand would get it even if a dust particle flew in. Because Ichthysosis is a skin "disorder" your eyes are made up of epithelial tissue. My eyes would not close at night correctly and not matter how much ointment or eye drops I put in,it did not stop the abrasion from happening. Now, I am feeling a alot better my eyes a lubricating nicely. Another problem I encountered my tears were not good. The tear duct were deteriorating and the tears I produced were not clensing the eye. The insurance covered my surgery, the doctors visits and a new medication that is out for those suffering severe corneal problems. It helps in restoring the tears in my eye its called Restasis. It is extremly expensive and you should check if the insurance covers it. I am wondering with all these problems if we can apply for social security. My surgery again will need to be done within 5-10 years and I was out nearly 2 1/2 weeks from surgery. In all honesty, I am still healing and it has been 2 months but I am so glad I did it. My eyes now are better. I wake up and instead of dryness their moist. I also have "eye bugers"...its exciting I had not had that in years.

I hope this helps.

Posted by: pauline5

Re: Eyes - 12/22/03 03:19 AM

Hi Sofia,

sorry to hear all about your surgeries, and pain you are having to endure, I don't envy the guys who have ectropian eyelids, it must be so painful...

I have developed the dry eye problems the last few years, but it is getting worse lately, and the doctor just told me I have to now lubricate my eyes every hour, to prevent scarring and scratching of the corneas, is that the same as corneal abrasion?

And I have discovered lately, that you are so right, our eyes are sooo important, if not moreso to take care of...very delicate organs...

And Keith, I wonder the same thing, although I have EHK, and have never had probs with my eyes growing up, all of a sudden they are sensitive to light, and always giving me that scratchy feeling...

Does anyone know if there is anything else we should be doing apart from the good quality glasses and eye lubrications...?

Hope you continue to see some improvement, and get some relief Sofia...

Take care
Posted by: Chandra

Re: Eyes - 12/22/03 04:10 PM

Just a quick note on sunglasses - get the kind that also have some sort of protection for the sides, too. Sunglasses that shield your eyes only from the front aren't as effective. You will get a bit more relief with glasses that shield the sides. While you may not look as stylish as you'd like with this type of sunglass, at least you'll be more comfortable!
Posted by: Ellen

Re: Eyes - 01/03/04 03:12 PM

I have a dry eye problem, too. The eye doctor told me to use drops and ointments in my eyes, but they didn't seem to work. What did help was taking a tablespoon of flaxseed oil every day. It has taken the grittiness out of my eye. I use the type without lignans, because the type with lignans gives me negative reactions in other areas of my health.

Posted by: Annamarie

Re: Eyes - 01/08/04 11:42 PM

My son Ryan also has had many problems with scarring on his corneals caused by his eyes not tearing and also ectropian of the eyelids since birth. His has had eyelid surgery many times to take out a piece of eyelid skin and put in a larger piece to make him more able to close his eyes. At one point he had to have eyedrops in each eye ever hour and then ointment at night. The last surgery he had was different. The surgeon just put stitches to pull his outer eyelids closed more all the time. This has seemed to help him immensely. He doesn't need the eye drops or ointments anymore. He does use a humidifier though every night in his room.
Posted by: SusieL

Re: Eyes - 07/19/04 04:57 AM

I am curious about the surgery where they put a stitch or two in lids to close them more... first of all, is it noticeable? Does it look odd, or can you not even tell they're stitched? My son has slight ectropian with his LI and the doctor mentioned this surgery as a possibility in the future. I am wondering if I should just have it done to avoid the abrasions in the meantime.

I am wondering if he got an abrasion this week. He woke up one morning with one eye bright red in the inner corner. The white part of the eye. It looked like a few of the little blood vessels broke. He was able to open the eye and he didn't rub it or complain about it unless I was trying to open his eye to check on it. It has gotten more pink than red now, so it must be healing. Is that what it looks like? I had originally thought he must have rubbed some Amlactin in it or something, but now I'm wondering...

Posted by: sofia

Re: Eyes - 08/03/04 03:00 AM

The surgery I had done in October was the best choice I could have made. Although, I still have dry eyes (mild) it is a thousand times better. I think that as scary as it was I would do it again when necessary. The surgery consisted of lifting my lower eye lid. My doctor stiched the side of eye lid (rear part of the eye) just slightly. I had mild bruising and stiches for about 3 weeks. Once removed I had a small red scar which has finally faded. So over all I had a lift which benefitted me greatly but made me look younger too.

[img]http://www.ichthyosis.com/ubb/smile.gif[/img] Sofia