hi my friend, I'm so sorry. You are not alone. I wish we could all get together and have a a support group gathering. None of my family, mom or dad's side, great grandparents and beyond have had this. Mine was apparently a rare occurrence. Along with droopy eye, (mainly right eye), also have chronic dry eye and now balance issue due to weakness of my feet. I went to Hopkins and basically the diagnosed me and said i have a while to wait to get frontalis sling. They said wait till your eye almost closes. Computer bothers me a lot, so i have to get off this thing.
not crying anymore... i am just angry, but just trying to cope and thankful i just got his now and not 20-30 years ago like so many.. I have a lot to be thankful for. what is going on with you!! i'm dreading winter b/c that is when eye pain is worse for dry eye.
Last edited by moderator2; 08-24-2011 at 07:59 PM.
This is my first time posting on this site.. I have SLE and post alot on their site.. We just found out that my husband has CPEO..through a muscle biopsy that he had done.. We are clueless as to what is going on.. He started having hearing loss a few years ago and his eyes have always been a little droopy, but we never thought anything about it..Well, long story short: he had a really bad car accident in May and spent about 3 days in the trauma unit and fractured all the bones in his face, when we seen the eye dr on the trauma team, the first thing he ask us was did he have CPEO? because he woke up from the wreck with double vision (that he still has) and he could not move his eyes from one side to the other..We have seen about 5 specilist by now and go back to his eye specialist tomorrow.. they are even talking about putting a pacemaker in!!! Can someone who has had this awhile PLEASE help me understand what we are in for and if we are going in the right direction?
Thanks to anyone who can help...
so sorry to hear about your husband. The thing with all of us with CPEO, we all have had very different symptoms at different times. I am 39 and was just diagnosed this year. It is very scary because it is a rare Mitochondrial Disease and there is no form of treatment or cure.
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We seen his Neuro-Opthomologist yesterday and he said basically that there wasn't anything they could do about his droopy eyelids until they
are almost closed..So he had them to put these prisms on the backside of
his glasses that just stick on and see if that helps to correct his double vision, these things were $67.00 for just stick ons!! I hate to see how much the real "permanant" kind will cost..If they help over the weekend then he
will write a script for the glasses... Does anyone here have to wear them and could you tell me how things are going with them..
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bama girl, take heart, as i said there are different symp. out there. Most of us have the droopy eyes, some have had or have hearing loss, or heart conditions (usually associated with KSS). Most Mitochondrial patients (there are 40 named MITO diseases, one being cpeo- see UMDF.org - I called them a few times and they gave me good info and support that dr.'s didn't) are usually very tired, some have limb weakness. I have horrid dry eye and terrible light sensitivity, this is not common for CPEO.
One thing bamagirl, try not to be tempted with all the computer info out there, because it can be upsetting and there is so much unknown.
I haven't had to get a lot of second opinions but I know some have gone to several dr. so just don't accept what the first dr. says, take your time. Be careful with the internet.
bama girl really needed to hear that about the droopy eyes, not being able to address that issue till they are almost closed. I have had the same situation, and had one neauroplastic dr. ready to do lower then uppper lid lift then went to hospital met another dr. and he said NO lifts and wait till eyes are almost closed to get surgery (CPEO advised surgery is called Frontalis Sling b/c our eye tend not to close all the way.
I'm so glad you were told that too. Never heard of the prisms but I do n't really have double vision.
I'm nearly 20 and have had it all my life. I have ptosis mostly but i feel other symptoms are starting to show, muscle pain, very tired etc.
I had 2 operations when about 12 weeks old where they connected my eye brow to my eye lid so they would stay open. I have since had an extra operation in 2007 to lift the eye so that i do not tilt my head, this went successfully but did not work fully. Therefore i went for another in February 2011 which worked more, but my eyes are now not level giving me dizzy spells. I will be returning for another operation before the end of october to sort this out hopefully.
However, my surgeon has said he can open my eyes slightly more and level the eyes but it may take 2 seperate operations!
I did also stop breathing twice when a baby and had to be put onto a home alarm system that would sound when i stopped breathing. I will be asking for tests to see if i lower capacity lungs etc. (my ~VO2 max is about 35 (way below average) and even though i'm a runner, my breathing is ALWAYS terrible and has not gotten better. I am now however struggling to walk so my running/cycling is none existant. Anybody else suffer from breathing trouble and had a diagnosis related to CPEO or mito disease? It may be that i'm unlucky and have terrible lungs, but it seems a bit of a coincidence in my opinion.
I have had no bad experiences with operations so i'd recommend them. I did have agonising pains in 2007 but in 2011 they gave me 1200mg ibuprofen every four hour plus, high dose paracetamol and an IV drip. I had no pain what so ever. I was neverous for 2011 after having pain but all i can reommend is ask for every pain killer they have, and their max dosage!
I have been doing some research to convince my doctors to prescribe me with different medication such as Coenzyme Q10 which i'm sure you're all familiar with for CPEO patients. I will report back on what they said and if any body would like a copy then email me. I also receive currently the lower mobility of DLA so CPEO patients can get that if you don't already.
However due to my dry eyes, muscles weakness and tiredness, (meaning i'm having a lot of time off work and not getting paid) i am going to appeal for the higher rate.
Furthermore, because of spending 19 years with my head looking at the ground (to reduce neck pain) i have terrible geographical knowledge, (road names etc, where shops are) therefore i have bought a walking GPS system (not cheap at all (about £600)) and i have to say it's reduced my anxiety greatly. Before I was scared to go out incase i got lost as i could not see road signs etc. I'd recommend looking into that too.
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oh dear lorddan. wow, you have had droopy eye for 20 years> just now getting surgery and you have had so many!!!!! i''m almost 40, eyes started drooping last year. Have horrible light sensitivity and dry eyes, plan to move to FL where it warm. I'm very uneasy on my feet, must wear flip flops or sandles or tennis shoes or I wobble. Do you have weakness in your feet.
Wow, wow... do you know many with cpeo? Very rare.
My balance is fine. In the last four or so months i have had ankle pain that has got progressively worse (maybe a related muscle problem im thinking) and last couple of days i am walking so slow because of the pain im getting over taken by 70 year old men lol. Having to put ice packs on every day now just to walk a couple of hundred yards.
My dry eyes are terrible. People keep commenting thinking im crying as i probably wipe my eyes a hundred or so times a day. It's called (if my research is correct) Keratoconjunctivitis Sicca. And by the looks of it there is a treatment they can do, i'm going to ask my surgeon about it when i have my consultation in a couple of weeks (i'll let you know what his thoughts are). This will mean i could be having a total of 7 operations on my eyes lol. I have definitely got my moneys worth out of the NHS!
Not sure if you get neck pain like me from the ptosis but i find that using "Powergel" which contains ketoprofen works really well for the neck pain (doesn't smell either which is really good so i can use it for a night out with friends and not have to feel concious of smelling odd hehe).
I don't know anybody else, apart from people on these forums with CPEO.
no neck pain, I put on a therapatch if necessary but I think that is from stress from work.v
my biggest thing is sensitivity to light. I've never heard of any anyone with sensitivity to light who has CPRO. I think first I had sensitivity to light, then eye droop and weakness in my feet. In the winter is when my dry eye gets bad. Can u believe, when my eye dr. sent me to neauroplastic dr to do lift, he said lets find out why your eyes are drooping (good, right?) but then he did eyelid, yes eyelid biopsy to test for CPEO ( was told a thigh muscle biopsy should have been done ). eyelid biopsy speciman was not frozen, so when speciman was sent to mayo, results .were inconclusive (they requested frozen sample)
Wow, i understand the doctors being confused by the condition but he seemed to have got EVERYTHING wrong haha.
My neck pain used to be that bad that i'd have to go bed for an hour or so after school to relieve it. Thankfully it's not that bad now but i still require physio and daily neck exercises.
Not sure if anyone else is getting it but that last couple of weeks i have started to get a really strong pulsing sensation in my body. I can be sitting there with my hands on top of each other (light to no pressure) and feel a massive throbbing. It happens in other possitions too. Also, i am getting muscle spasms before sleep, (last couple of weeks it started). I can feel a build up of a tingling sensation/ crossed with the sensation you feel when you are nervous, which lasts for about 20 seconds then i have a half a second body twitch. It's very new to me and the build up us so scary. Anyone had these? Hopefully it's something as simple and unrelated as high blood pressure.
One thing i did forget was that my surgeon said that the muscles above or below my eyes had turned to scar tissue/gristle as i was forming during birth. Therefore they have never worked like you'd expect. However the operation in 2007 saw him cut the scar tissue slightly to lengthen it/allow it to stretch, which worked well. However in 2011 he said he could not do that anymore so he has removed the whole muscle and allowed the eye to move and reconnect to the inside of my eye socket (he said it has a natural stickiness that will help it bond). The down side is that my left eye worked fine but the right eye stuck in a different position, this means i now have one eye droppier than the other. This is causing dizzy spells and very little depth perception. So if you are recommended the surgery ask whether they are removing the muscle or not, because if they do, it's unpredictable where the eye will connect to the socket and could cause uneveness.
It can be corrected but he could not tell they were going to be uneven until a week or two after when i could open my eyes fully. Before this time it was just too painful so could not tell.