|
|
|
|||
|
| Ptosis crutch: the when why and how update |  | ||
| Archive | |||
|
Posted by: pdb ® 10/31/2008, 06:48:17 |
There seem to be a steady stream of requests about this. so I thought I update an earlier post with some additional material. When a ptosis crutch might be useful: * (Obviously) if you are suffering from ptosis, as a result of Botox or from some other cause. * When you have the type or phase of BEB that has your eyes close for a period of time, with or without light to modest spasms * For some people (e.g. me) the ptosis crutch works as a sensory trick and seems to inhibit spasms and closures. When it isn't appropriate: * If your spasms are really strong, this won't stop them. e.g. if taping your eyes open doesn't work, this won't either. Concerns about them: * Do they make dry eye worse? If they are well fitted, you can blink quite easily, but you need to pay attention to doing that enough, using drops enough, etc. * What if I fall on my face, will they damage my eye? A good thing to be concerned about. They are made of thin, reasonably flexible wire, which will bend if pushed. As they should be sitting above the eye ball, they should not push across the eyeball in a fall, and should just bend to flatten out. No-one can guarantee that, so you decide yourself. For me, having vision prevents me from falling. Having got a sprained ankle from a fall when I should have been using the crutch but didn't, I can vouch for the dangers of NOT wearing them. * Are they comfortable? If properly fitted, then the answer to that is somewhere between yes, and maybe not after a while, but it's worth it for the ability to see. Perhaps some of the regular crutch users can comment on that in responses. * Cost? I've seen quotes and actual receipts ranging from $30 to $75. * How do I know if they will work for me? Best trick is to try the old taping up the eyelids trick. If that provides some relief, then a ptosis crutch likely will too. And relative to the cost of surgery, it's a cheap experiment. Where do I get them? I will update a previous post and insert that here. Rick Williams Eyeglass Repair shop in Elgin Illinois has made them for several of us, via phone and email. His web site is http://eyeglassrepair.net/_wsn/page3.html. His phone number and email address are (800) 249-6944 any495@yahoo.com. I've now had them done by him twice, with excellent results. His web site gives pointers to how measurements can be taken, but my wife and I cobbled up a way of doing it that worked also, and others on the board have used that. I can send the diagrams etc that I used that illustrate this. But even better is to have your optician call him and get it done that way. Either way, talk to him about the measurements etc. Many people are finding that their local optical shop can get these done, so phone around and see. I know there are at least two in Manhattan (Gruen and another I've forgotten), and other people might respond to this posting with others. You or your optician can also get in touch with Alex Yoho at ayoho@cox.net in Topeka Kansas. He is a published expert technician, who does training on making these things. And if you haven't seen the pictures in the photoalbum (as against the FAQs), look there as well. You can find the link to the photo album at the top of any forum page. Look in the non-surgical aids section - and just for good measure the link directly to that is
When in the photo album, click on the pictures for a bigger picture and some additional wording. Cheers Peter Related link: http://eyeglassrepair.net/_wsn/page3.html Modified by pdb at Fri, Oct 31, 2008, 09:56:45 |
| | | | Current page |
| Replies to this message |
| Re: Ptosis crutch: the when why and how update | | ||
| Re: Ptosis crutch: the when why and how update -- pdb | Top of thread | Archive | |
|
Posted by: afisher ® 10/31/2008, 11:30:34 |
I agree with Peter that they are more of a sensory trick, so if the tape or pushing one eye brow with a finger works for you, these may also. They do not "hold" your eye open, so again as Peter said, when the spasms want to take over they will. comfort: some days I hardly notice them, some days I can't wait to tear them off my face. I just take the discomfort as part of the alternative. I must wear them to drive and if that is uncomfortable, so be it, it gets me to work and any other place I need to go. I don't drive anywhere unless it is necessary. dry eye: yes, some days (when they are holding my eyes open at their best) I can feel my eyes drying out, but again, the discomfort to me is worth the alternative of not being able to get around. As I use mine mainly for driving, I know this is a temporary situation and eye drops are available soon. I've been wearing them 2 days straight right now as I am on vacation at home and want to get things done with my eyes open and am tired of the tight ball cap on my face. They are working quite well, although I know I will need to take them off to rest a couple days before returning to work. I had a great experience working with Rick in Illinois by mail and I think he charged me $75. Andrea |
| | | | Where am I? Original message Top of thread Current page |
| Re: Ptosis crutch: the when why and how update | | ||
| Re: Ptosis crutch: the when why and how update -- pdb | Top of thread | Archive | |
|
Posted by: steven g ® 10/31/2008, 16:03:19 |
Peter...you always have knowledgeable, sensible things to say. I am glad you mentioned ptosis crutches are not for everyone. I have had beb for 8 years. Tried the crutches on the advice of a neurologist who didn't quite get it. I have hard closing of the eyes. Go right past the crutches. Also, those with meige and violent twitches, which I have frequently, do not benefit from ptosis crutches. I would imagine anyone with mild beb or botox that works very well can benefit from ptosis crutches. My botox results are very unpredictable. Just had to add my two cents, because that is probably all it is worth.
Good luck to everyone. Steve |
| | | | Where am I? Original message Top of thread Current page |
| Re: Ptosis crutch: the when why and how update | | ||
| Re: Re: Ptosis crutch: the when why and how update -- steven g | Top of thread | Archive | |
|
Posted by: afisher ® 10/31/2008, 17:46:23 |
and Thank-You Steven for voicing the other side. We certainly don't want to mislead anyone. We all know what works for one does not work for all. We just want to be sure the word gets to those it would help because for me, it is the miracle that allows me to continue working. I do not know where I would be without mine. For my "type" of BEB it is the answer that had allowed me to keep on keeping on! Andrea |
| | | | Where am I? Original message Top of thread Current page |
| Re: Ptosis crutch: the when why and how update | | ||
| Re: Ptosis crutch: the when why and how update -- pdb | Top of thread | Archive | |
|
Posted by: Karen ® 11/03/2008, 00:03:44 |
Thank you for the good info. I have a question......I am more in the squinting stage of BEB. I'm very sensitive to light and my eyes are dry alot of the time (I use moisture replenishing drops as needed. Would the Ptosis crutch work for me to help with the squinting aspect? I squint so hard sometimes that my eyes tear up and run down my cheeks. Thanks! |
| | | | Where am I? Original message Top of thread Current page |
| Re: Ptosis crutch: the when why and how update | | ||
| Re: Re: Ptosis crutch: the when why and how update -- Karen | Top of thread | Archive | |
|
Posted by: pdb ® 11/03/2008, 02:07:27 |
re the squinting.... My guess is that you will pass through that stage, and that the ptosis crutch likely is not going to be of use until you find out what the more settled down pattern of bleph you have is like. That's assuming your progression is like mine, where squinting was an early phase that then changed to more of a spasm/closure model. In any case, feeling is that squinting is not something it will help with. Maybe others have a different view. Good luck Peter |
| | | | Where am I? Original message Top of thread Current page |
