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Old 03-17-2011, 07:33 AM   #1
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Severe Chronic Dry Eye, Possible CPEO diagnosis

Hi Byu (age 39) here, the last six months my eyes have begun to droop and chronice dry eye has set in (I use Systane drops and Restasis etc), not much relief. I work in a highly lit area with floresent (sp?) light and am on computer 8 hours a day. I already have Plantar Fasciitis (since 1994) so my quality of life has already been affected and now this horrid dry eye with possible CPEO (i had an EKG to test for Kearns–Sayre syndrome-negative). Natual light or cloudy days don't bother me much. Overhead lights/fridge light and computer bother me most. Waiting for results of eyelid biopsy (surgery was three weeks ago).

 
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Old 03-18-2011, 07:58 AM   #2
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Sling Frontail surgery?

so after your sling frontails surgery to lift eyelids, has the surgery helped your eyes stay open better for driving etc... My eyes are super super dry and just had eyelid biopsy for CPEO ( no results yet) it has taken three weeks for my eyelid biopsy to begin to heal, how was your sling frontails surgery, was there scarring, have your eyelids begun to droop again. Also did you have EKG to show the Kernes Syndrone (mine was negative)...
thank you

 
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Old 03-23-2011, 12:40 PM   #3
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Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

which doctor at hopkins did you see and which procedure did he recommend besides Sling Frontails (i have heard eyes feel heavy after this and possible adjustments have to be made periodically). I just had eyelid biopsy and waiting for results. if you can't say dr. name, that is ok, I possibly and going there next but unsure b/c i have poor muscle tone behind eyes, severe light sensitivity and droopy eyes (just in the last year). Did you ever get surgery done? I'm excited to know there might be something better than sling.

 
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Old 03-23-2011, 01:22 PM   #4
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Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

i am almost 39, eye began to slowly droop about 12 months ago, extreme sensitivity to light, droopy eyes and hard to focus when driving. Right eye is more droopy than left. Had eyelid biopsy to check for CPEO one month ago, waiting for results and to be honest since my muscles behind eye have limited movement and I know this can't be fixed, I haven't heard a lot of success stories on Sling Frontail surgery (ppl say you have to get readjusted and your eyes are heavy) my eyes are already heavy. No one has posted much this year what is going on with you?

 
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Old 03-23-2011, 01:28 PM   #5
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Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

not many ppl have posted this year 2011, have you had much luck with this Sling Frontail surgery? from what i have read on the board, they have to be readjusted and your forehead gets tired from lifting lids with forehead and there hasn't been success stores. the light bothers me more than the droopy eyelids. Any help would be appreciated. Also i hate the computer (of course I work on it daily so try to not look at it at home). but i am using this board while at work b/c i have to be on it anyway

Last edited by moderator2; 03-23-2011 at 01:35 PM.

 
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Old 03-24-2011, 07:23 AM   #6
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Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

.I have had the sling and it has been great. It feels funny at first but you quickly beme use to it. Sun light has always bothered me so I use sunn glasses. I have a slight corective lens that helps when driving. I have 4 pair of glasses 2 for driving 2 for reading. They are a little different strength. The driving ones I trade of between no glasses to 1 of 2. It seem to help with strain. The reading 1 is for reading and the other computer. I tinted one of the driving glasses and that helps. It was a yellow for dull days. I should get one for sunny days. Live love and laugh no one else sees it and you are unique with a rare condition. It helps in the medical they like rarities.

 
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Old 03-25-2011, 05:42 AM   #7
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Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

so first, how old are you, second... do you have dry eyes? when did you have the sling (I heard it is reversible. I wear sunglasses even in the stores. Natural light, doesn't bother me at much as all the florescent lights everywhere. I'm a Christian and am so discouraged. Do you bother to use eye drops (Systane) to give you some comfort. My right eye is more droopy and more painful (stings) than the left, i guess if they do they sling, they even out your eyelids. My doctor told me a month or so ago that dry eyes are common and there are many who have extreme sensitivity to light. I said "why isn't everyone wearing sunglasses" lol. Do you wear sunglasses even inside. Did you have an eyelid biopsy (I now know I shouldn't have bothered b/c it doesn't matter what the tests show, I will always have blepharitis. Do you have limited or no movement in the muscles behind your eyes. I don't so that is why my eye started to droop. I had lazy eye surgery when i was 2 and went to an eye clinic for 3-4 years at age 6 to do the eye exercises but I guess that obviously didn't help. I need more encouragement and info please. Thank you, your reply means more than you know.

 
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Old 03-25-2011, 08:17 AM   #8
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Cool CPEO 2011

Thought I might start a new thread... anybody do fine with their limited eye muscle movement and chronic dry eye and have the most pain (in the eye) when they use the computer? If I didn't look at the computer ever, I think I could manage the dry eye, limited eye movement and droopy eyes (no surgery yet), as soon as I look at the computer, my right eye begins to burn (the one that is most droopy). My life has been drastically changed b/c of this and I have found a bit of comfort and help thru thus. I try not to bother with looking at the computer otherwise except scanning my e mail for anything urgent. I use systane drops (gel and balance) and the natural light doesn't bother me much. Any advise? Anyone have frontails sling THIS year about age 40 ish. Also anyone have no history of this eye mess in their family, you are the first? Also... anyone out there have lazy eye when they were young ( 2 or 3) wore patch, did eye exercises then haven't been to eye doctor since there dry eye/droopy eyes appear. Thanks for any encouragement on this. It could be worse I know but... I'm having a tough time.: I do wear sunglasses at work and when I go to the store but have realized my eye still burns whether I wear sunglasses or not. I have my sunglasses on right now.

 
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Old 03-28-2011, 07:20 PM   #9
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Re: CPEO 2011

Hi there,
I am currently dealing with CPEO having been diagnosed in 2008.
Have had the sling surgery in 2009 and have experienced multiple differences in body since then!
I am 24 and struggle with a constant lack of energy and aching muscles.
My eyes continuously dry out causing me to put drops in during the day and gel at night sleeping with a mask.
My left eye burns more than my right and i find my sight and droopyness is more noticeable in the left.
I had perfect sight before the operation-2years on and i require glasses 24/7.
I am seeing my opthamologist next week and will be discussing another operation due to my eyes having drooped and starting to cover my pupils again.
I find driving at night very difficult and in the afternoon when my body starts to get tired my eyes get extremely heavy and tend to cause headaches with my straining my forehead to keep my eyes awake/alert.
When i first found out i had this disease i felt sorry for myself and always felt down, now ive come to terms with it i know i just have to deal with what ever comes my way and just live each day the best i can with what ive got!
As much as i struggle i always think theres someone else out there with worse than what ive got!

 
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Old 03-29-2011, 05:14 AM   #10
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Re: CPEO 2011

That is just what I needed to hear. you are 24, wow. Did you have eyelid biopsy or did your dr just tell you you had CPEO? Your e mail was encouraging and sounds similar to my situation. I went to wearing glasses occasionally to all the time. Thank you again. So if I understood correctly you had sling surgery to lift eyelides 2-3 years ago and you are going to have to have it again b/c they have started to droop again somewhat? I'm going go my first Md Ophthalmologist, and I am going to get a new glasses RX with new frames, maybe transitions this year that adjust according to light. Also she was the one who recommended this Occuplastic surgeon who obviously has not followed up on my biopsy. I will ask her what the protocol is to deal with this person who did the eyelid biopy who did not follow up with the lab. Does the overhead/florescent light bother you more than natural light? Thank you for any questions you are able to answer.

 
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Old 03-30-2011, 01:14 PM   #11
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Re: CPEO 2011

Got a call from Dr. this morning, said results of eyelid biopsy were Incunclusive. From what I know, results sent to lab in local area, the processed with incunclusive results, sent to Mayo and they need frozen speciman which were not available. In my opinion I should not have bothered with biopsy since I already have limited eye muscle movement, droopy eyes and Chronic Dry eyes. On the way to BIG hospital nearby to see Dr. NOt sure if i can post hospital or not, my eyes hurt too bad to read all the restrictions. It could always be worse.... I'm blessed and I need to count my blessings.

 
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Old 03-31-2011, 11:38 AM   #12
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Second Eyelid Biopsy

Anyone ever bothered to get second eyelid biopsy to test for CPEO when first test was incunclusive?

 
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Old 05-15-2011, 03:57 PM   #13
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Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

Quote:
Originally Posted by prairyrose View Post
.I have had the sling and it has been great. It feels funny at first but you quickly beme use to it. Sun light has always bothered me so I use sunn glasses. I have a slight corective lens that helps when driving. I have 4 pair of glasses 2 for driving 2 for reading. They are a little different strength. The driving ones I trade of between no glasses to 1 of 2. It seem to help with strain. The reading 1 is for reading and the other computer. I tinted one of the driving glasses and that helps. It was a yellow for dull days. I should get one for sunny days. Live love and laugh no one else sees it and you are unique with a rare condition. It helps in the medical they like rarities.

 
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Old 05-15-2011, 04:04 PM   #14
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Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

Hi, Your enthusiasim about the sling has encouraged me, as I have had the muscle raised in 2008 and my eyes have fallen, I have an appointment tomorrow to have an exam and possibly go for the sling. I was diagnosed in 2008 with CPEO. How was the surgery and what was the down time? I am female and 62 yrs old. Is there visible scarring? I guess to see better and less strain on neck from looking up is worth anything!! Not being to open my eyes is so frustrating, and feel like I look half asleep all the time!!
Waghappy

 
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Old 05-16-2011, 04:34 PM   #15
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Re: CPEO 2011

ren hey just been to HOPKINS and told i have cpeo and told to see rhemotoloist (sp)
also told maybe I have Sjogren's. My eye hurt so bad I can hardly see straight.
I'm 39 and was told to wait to get Frontails sling. I think my eyes are pretty droopy, anyway, the dry eyes are killing me (i just got bottom temp. plugs. I wonder how many ppl have cpeo and sjogrens?

 
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