Would love to communicate with someone who has the frontal sling operation for CPEO. I had it on July 5 and this made a world of difference. I had the muscle pulled back in 2008, but it was not successful, so my doctor suggested the more invasive surgery of frontal sling. What a success. I still have puffiness over eyes, some couold be excess skin due to my age.
Has anyone else had this surgery? Or is not I would love to communicate withother CPEO patients
Last edited by Administrator; 08-08-2011 at 12:04 PM.
Hi, I'm Moseydogblue and I'm due to get a frontal sling in both eyes on March 28th 2012.
I had experienced muscle pain and difficulty in swallowing, but wasn't sure what was going on. I kept hitting my head on things, misjudging the distance to overhead cabinets because I really couldn't see them. Finally went to a doctor when the lady at the Motor Vehicle dept. had to tip the machine to get me to pass the eye test to renew my license. Nice to have the license, but I really can't drive. I'll let everyone know how the surgery turns out.
I had bilateral frontal sling in 2008. I've been extremely happy with results. I had my first eye surgery in 1991. It was to correct ptosis on my left eye. I then had several strabimus repairs one eye at a time. When it came to have frontal sling, I was a little weary because some of the prior surgeries created a lot of scar tissue which developed into adhesions on my left eye. The adhesions made it impossible to blink or move the eye lid so I developed two corneal abrasions. I love the slings! My doctor wouldnt lift my left eye very much due to the abrasions but the lower lid actually blocks the double vision I experience. I've developed a wrinkle dimple in the middle of my forehead from using my eyebrows so much. I don't mind my dimple because I feel I look more awake since the slings. I can see better.
I also have complete paralysis of both eyes and I've over time found myself a tilting my head to see. I experience frequent headaches. Unsure if related to CPEO or my head position. I have mild limb and facial weakness, swallowing difficulties, fatigue, exercise intolerance, continuous ringing in my ears, sensitivity to light, night blindness, no depth perception and frequent bouts of dizziness. I was wondering if this sounds familiar to anyone else. If so, how are you managing?
Thanks for the reply. I too have muscle weakness, difficulty swallowing and some muscle weakness I have to bury my larger pills in butter so that they will go down, but I can eat anything, and so I do. Some foods I have to wash down. I prefer rum. Rum, and being overweight, combined with muscle weakness and by the way prostate cancer, doesn't work out really well, but a little more rum and I'm certainly less concerned about the whole matter.
I like the rum idea! You know I never thought about using butter. Genius! Within the last few months I had to switch to gummy vitamins. They actually make CoQ10 gummies! I was really excited when I found them.
I just had a swallow study and I am a little nervous about results. Basically, the speech pathologist told me to switch to smoothies, soups, casseroles and etc. Also to snack a lot. Eat more often and less at one time. Its hard to snack at my job. I'm going for a second opinion next month but I'm guessing there's not a lot anyone can do.
I am looking forward to getting my eyes fixed. Right now, I'm looking at the world mostly through my eyelashes.
My doc says that he's not going to open my eyes wide, but that he will at least get the lid out of my field of vision. I don't much care how it looks, as I am old and fat and have a bushy beard, so I don't have to dress much for Halloween in any case. It will be a treat to see, however.
With your muscle weakness, I get a certain amount of pain. Not anything terrible, more like the soreness you get from over-exertion, and I can assure you that nothing could be further from the truth there.
If I ever decide to move, what would "exercise intolerance" be like?
I'm happy to hear your eyelashes will be out of your line of vision. That's how my left eye was and it was extremely annoying for me. My right eye was raised higher and my eyebrows are off but I'm used to my eyes not looking the same. I bet you will love it. I do have to use genteal gel three to four times during the day and genteal nighttime ointment at night to prevent dryness. Small price to pay in my opinion. You will have to let me know how it all goes.
My husband and I have four children. Two of which are school age
One day I went to school to have lunch with my eight year old boy. A little table mate asked my son what was wrong with my eyes. My son looked at me real quick and shrugged his shoulders. This was a few years after my slings. I felt for the first time I embarrassed my kiddo. I guess at some point we all embarrass our babes. Its moments like that I get mad at this disease. It can always be worse. I guess I'm telling you this because I've found someone who understands exactly what it means to have eyes like mine. I am very blessed and a I have a support husband but he can only listen. He gets it because he's lived it through me. Its nice to share similar circumstances, in a way its. validation. So, thank you for taking the time to write back and sharing your story with me.