Hi everybody
I'm new to this so am still not sure if i am doing the right post or whatever!!
Anyway, I have recently been diagnosed with Chronic Progressive External Opthalmolplegia after having many tests and a muscle biopsy. I am 15 years old and just wanting some more information about it from people who actually have it instead of one of the many consultants i have seen who just give way too much confusing detail!
Im expecting an operation sometime this year to lift my eyelids but at the moment i still know little about this!
Anyone had any experience of this operation or of the disorder?
Any comments would be appreciated
Thanks, Nat x
Sorry to hear you're going through the process and finding out you've got CPEO. I can only encourage you that it sounds like you're seeing good doctors if you're even getting a diagnosis. So many of "us" have had to go through many many many doctors visits over the years when little was known or discussed about this problem.
Before going into what CPEO is I would encourage you to read the other posts on CPEO on healthboards. Just put CPEO into the search bar at healthboards and you'll get some of the closed postings... very informative and this will give you some background on a lot of the participants backgrounds
Hope this helps you out. I'll be happy to answer any questions you might have also. I had CPEO's onset right around your age as well. Doctors still aren't sure if my condition is more "Kearns Sayre Syndrome" or CPEO etc...
I was first clinically diagnosed in 1993 then with mito dna deletion and complex 1 deficiency. Had two rt. eye ptosis repairs prior to then. Now I need to get another but don't really trust anyone on my insurance to know what they are doing (with me that is). Probably need to venture out but there is always difficulties with that, given the distance & necessary after care and such. I'm wondering about if it is possible to have something a lot less invasive then muscle adjustment, just a minor adjustment, like a little skin tuck. Oh, well.
Hope everyone is doing fair,
Sandy
Last edited by moderator2; 09-27-2009 at 09:22 AM.
Reason: the remark was inappropriate
Hello Sandy, I have the same issue as well...I have had two operations for ptosis but the first one was unsucessfull and dont like the turn out of the operation...I there is a doctor here in Texas that preformed the ptosis surgery on my left eye where he went underneath the eyelid and made the adjustment, it came out very good....I will find out the name of the procedure and get back to you...Where are u located, Im so thankful I found some1 to share info with
Keith
Last edited by moderator2; 09-28-2009 at 05:36 AM.
Reason: please try using the Quick Reply button instead of Quote Reply
I thought I replied but somehow didn't take. Anyway I would like to know about the procedure you had and where. For some reason my insurance for specialist includes Texas. It's at least 500 miles away!
Hi,
I was diagnosed about 12 years ago, have had 3 surgeries to lift my lids. Many problems with that including dry eyes, I use restasis and sleep in a mask at night as well as wearing goggles outside to keep the wind off of my eyes.
Last year I suffered a stroke, my right c artery is narrower than my left because the muscles in the artery have thickened for some reason which I believe is related to cpeo...has anyone ever heard of this?
No sorry I have never herd of this....im sorry to here that has happen...I to have cpeo, what have the doctors stated to you and could this been prevented in anyway.please get back to me
the procedure i had was done here in Dallas tx, the doctor was very helpful than the first doctor that i saw on my left eye...the sugery was very sucessfull...he did the procedure underneath my eye lid instead of cutting on the out side to lift my eye lid...came out much better his name is dr. mazow,...
Last edited by moderator2; 11-18-2009 at 01:14 PM.
Reason: please do not ever post anyone's telephone number for any reason
Yes, the heart may be involved and considered a CPEO progression. I'm suppose to get it checked every year, but I don't. Myopathy could make the heart muscle enlarge. I hope you're okay. Dry eye sounds terrible. Over time it should relax, one would hope.
My neuro-ophthalmologist retired I'm asking his replacement about ptosis repair next month. Maybe get a referral somewhere. I'll look up dr. mazow, I can find his/her's #, no problem. Thanks
the procedure i had was done here in Dallas tx, the doctor was very helpful than the first doctor that i saw on my left eye...the sugery was very sucessfull...he did the procedure underneath my eye lid instead of cutting on the out side to lift my eye lid...came out much better his name is dr. mazow,...
Which surgery did you have? the levator resection? Could you give more details?
The procedure that AI had was performed by a doctor here in Dallas,tx which he is very well experienced with this procedure...the procedure was performed under my eye lid where the excess skin was removed and the eye was lifted about 1 mm...it was done very well...u cant even tell anything was done...wich we could talk about this instead of messages...I would love to know more about ur symptomns as well...the procedure that ur talking about was offered to me by anohter doctor but didnt like the procedure, the procedure im telling u about was alot better...serious...get back with me.....
Hi There
I was just reading your post. I too just found out in the past couple months that I too have cpeo, I am suppose to go for the muscle biopsy, and after seeing it done on utube. I am well not too sure. It looks very painful!!! So tell me please how was that?
How was your eye surg.?
I have hearing loss and no signs yet of the droppy eyes. They feel weak so if there is a droop it is not noticeable yet. I am always tired though, its a struggle to get out of bed some days.
Please keep me posted on your health.
thanks
I never had the muscle biopsy, but I think its a relatively straightforward procedure.
My eye surgery went OK. Had both eyes done the first time but the left didnt take real well, so I had to have that done again a few months ago. Now I think both eyes are better, I can certainly see better. Was hoping for a better cosmetic response but my wife and co-workers said it looks better than before. Overall, the surgery wasnt too bad, not really painful at all.
Luckily I dont have a lot of weakness, my symptoms are just about limited to my eyes. You might try some of the vitamins and see if that helps with energy. I take a bunch (coQ, riboflavin, etc) but dont notice much difference with my eyes.
Hi,
Thanks for the reply! I have been taking vitamins, I have also started with the coQ10. Seems most people with this are taking that, so i got me some! have no idea if they are working but my fingers nails are looking better then ever!!!
Still have not had the appointment for the muscle biopsy. Arms and legs are weak eyes feel heavy. And I am still terribly tired. I think that is the worse for me, trying to get out of bed in the morning.Headaches are not too bad either right now.
There really is not a lot of info on the net. Every case is so different. I can't find anyone in Canada to talk with either.
Anyway thanks for the reply!
hi cpeo sufferer here. have droopy eye, weakness in feet mainly and horrible sensitive to light and dry eyes. did you have Frontalis Sling? or something else. thank you.
