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| adjusting ptosis crutches |  | ||
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Posted by: Crystal Blue ® 05/02/2009, 15:10:14 |
Hi everyone: Just received my ptosis crutches back.... the right side seems to be fitting pretty well, although I still think that it is resting a little too much on my actual eye/eyelid rather than further up. My optometrist snapped off the left side when he adjusted them the first time and so after they were repaired , he was really leary about adjusting them too much the second time and left me to try them out now for a week. My left eyelid seems heavier and more droopy than the right right now. I am having to manually adjust it back onto the crutch as it keeps slipping off every few minutes. Definitely not giving quite enough support yet. The ptosis crutches seem like a great invention - I just need to get them in the right place. For those of you who use them ... did you have to adjust them a lot once you received them? How long did it take you to build up the time that you could wear them for one session and how long can you wear them in a row without getting sore eyelids or dry eyes? Thanks Crystal Blue Modified by Crystal Blue at Sat, May 02, 2009, 15:12:05 |
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Posted by: pdb ® 05/02/2009, 19:26:00 |
Hi there fellow ptosis crutcher. Not sure where yours came from or their design, but I'll assume they are thin wire covered by a plastic tube. The trick when adjusting them is to use two pairs of needle-nose pliers - or something similar. The one pair should be used to support the wire near where it is attached to the glasses frame, so that there is no likelihood of snapping it off. The other pair is then used to bend it into whatever shape you are trying for. It sounds like you you need to bend it up so that it sits higher, more above the eyeball than on it. I've attached a picture of recommended adjustment, that I got from Alex Yoho, Master Optician at Hawkins Optical in Kansas. Hopefully that will help. In answer to your other other question, I used the two pliers method to adjust my first pair (that were on an older pair of glasses). Then from that experience I was able to do better measurements for the next pair. I do adjust them a little from time to time, as the ptosis situation varies a bit during the cycle, and from one set of injections to the next. For me, the ptosis crutch serves two purposes, and I adjust them a little differently for each purpose. The first is to keep the lids up if I have ptosis. The second is that when BoNT is wearing off, and spasms are returning, I find the ptosis crutch acts like an in-place sensory trick, and keeps the spasms minimized. During this time, I can fit them with a little less pressure on the lids, as the lids are not drooping at this stage. As far as time wearing them is concerned, that is something that is also variable based on how well they fit. You may be able to blink with them on, or at least blink by flicking the wire away from the lid momentarily, or by just tilting the glasses forward to allow a blink. You need to do something like that quite often to ensure the eyes don't dry out too much. I definitely found my eyes feeling dry on first wearing them in the morning, but everything seemed to adjust itself after a little while. I do deliberately not wear them when I don't need them. I'd also suggest that if well adjusted, you shouldn't have too much problem with eyelids hurting. When wearing them in sensory trick mode, I can have them on for long periods, e.g. working the BEBRF stand at a trade show this week I had them on for about 9 hours before a half hour break, then on for another hour or so. I need a rest from them after a couple of hours if I'm in full-blown ptosis mode. Hope all that helps Peter
Modified by pdb at Sat, May 02, 2009, 19:30:11 |
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Posted by: Crystal Blue ® 05/03/2009, 10:32:05 |
Hi Peter, Thanks for all the detailed information. Fantastic! And thanks for taking the time to post it all for me. The pictures are REALLY helpful!! I took an article by Alex Yoho to my optometrist to look at but the pictures in it were a little difficult to see. These will be great!! If you have any other info about the ptosis crutches that you think would help, it would be greatly appreciated. I hope to see my optometrist sometime this coming week and to have further adjustments made. I will let you know how it goes. Yes, I agree, they need to go up higher. About the adjustments - unfortunately one of the adjustments was started without both sets of pliers. I guess we got too excited about the whole thing and it snapped right off! The rest were done very carefully, but obviously were not enough. In answer to your question, he was able to track someone down fairly close to us (in Canada) who was able to make them. They used pics as well as measurements. I think that my eyelids were much more droopy then as the Botox had totally worn off..maybe that is part of the problem. Anyway, I am not giving up yet. I am trying these out for help with the apraxia component I have which is pretty bad. Using it as a sensorty trick when the eyelids are reasonable and for actully propping the eyelids open when they are bad. Right now I have to manually open my eyelids hundreds of times during the day. They stay open for various time periods after that - of course, none of them very long. I can blink with them on which is a good thing. Thanks so much again for your help, Crystal Blue from Ontario, Canada where it is a beautiful day |
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Posted by: Shirley Barr in New Mexico ® 05/03/2009, 11:23:55 |
I do think that it is important to mention that the ptosis crutches need to be adjusted so that one can still have a complete blink. They are useful as a sensory trick device like Peter mentioned and to hold up extra loose, heavy upper lid skin but should not be used, in my opinion, to literally hold the eyelid completely open. I don't believe that any eye doctor would suggest this and you can cause damage to your cornea due to your eye drying out. So, just be careful with the adjustments and allow for that blink. Shirley in New Mexico |
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Posted by: afisher ® 05/04/2009, 12:13:11 |
I've been using the Ptosis Crutch glasses for a year now. Some days I can wear them for longer periods than others, some days they are more comfortable then others. After 2 set of Botox shots I could not wear them at all because they were very uncomfortable, almost painful. So I think it is a moving target and there is no perfect adjustment that will be a permanent solution. Just an aid to help us through our days. In my case, some days they are EXTREMELY useful, and other days they hardly do a thing for me. Just depends on what mood my eyes are in I guess :-) But I would not be driving as I do without them, I can say that for sure. Andrea |
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Posted by: Crystal Blue ® 05/04/2009, 22:30:51 |
Thanks for sharing your experiences. I am really hoping that I will be able to use them to help me manage better with reading, walking outdoors and driving at least short distances very close to home. That would increase my function and independence so much!! I haven't been able to drive for 2 years now. If not, this is my last experiment before having surgery. Botox is not working very well at all for the apraxia. crystal blue
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