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Posted by: pdb ® 12/20/2007, 18:10:09 |
I know this has been a topic before, but no search I did found anything, so please forgive if this is repetitious.
My problem is constant closing of the eyelids that is not strongly spasm driven - i.e. I can hold the eyes open with a finger - it's how I watch TV etc. So having a prop of some sort that hold up the eyelid might well help greatly. Anyone know where these can be sourced? Thanks Peter Modified by pdb at Fri, Dec 21, 2007, 22:18:10 |
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Posted by: Lee Ann ® 12/20/2007, 22:00:48 |
Hi Peter I just got ptosis eyeglasses. You have to call around to different eye doctors to find someone familar with BEB. When I called they said they were fammilar and could make the glasses but when I went they admitted they only made them for people with ptosis not BeB. What we finally decided was he would make a pair for me to try out...non prescription...cheap...and if I liked them he would make me a pair that would look better. You need metal frames because that's where the ptosis crutch is attached. Anyway, I've been trying them for a couple of weeks now and they are okay. It's difficult because you can't put them on too tight because then you can't blink. Anyway, I met someone at the conference in Florida who had them and they looked very attractive. Mine are ugly as heck...The crutch itself is ugly and I feel very funny wearing them but they help me drive at night...which is a tremedous help. In public I feel weird...So I would say go for it if you think it would help since you don't have strong spasms. I just wish I could find someone to make a pair that would look better than what I have. Even though they said they could, the crutch itself is ugly so any glasses would look funny. I'm so sorry I didn't get the name of the person at the conference who had a nice looking pair. Also, you can't wear them for too long because they are uncomfortable...They person who made them for me to try said, "well, even if they help you 20% of the time, it's an improvement and he's right about that." sorry I went on so long about it....Hope this helps Lee |
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Posted by: pdb ® 12/21/2007, 23:20:08 |
Thanks for that, I guess a call-around is the way to go and I'll try that, but if anyone can point me to a specific source that would be helpful too - e.g. my useful locations for going to see someone are PA/Phila, Manhattan or Seattle. I definitely think these are worth a try for me. Incidentally, having got the correct terminology ("ptosis crutch") from Lee, I find all kinds of links on a Google Search for that term. Annoyingly it includes sites that say "here's an easy way to make one - send money for the info". Grrrh.
peter |
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Posted by: pdb ® 12/25/2007, 14:35:02 |
It turns our the first listing in a Google search on ptosis crutch leads one directly to a guy called Rick Williams, who makes these. His web site includes a picture of what looks like a reasonably acceptable appearance device, so not sure if that's what Lee's set looks like. It's made out of springy metal and (all this from a discussion with Rick) just pushes gently on the eyelids, allowing blinking etc - but obviously not stopping spasm crunches. So my spare glasses will be UPSing their way to him tomorrow, so I can try this out. My grand theory/hope is that if this helps ptosis, then I can get much more aggressive positioning of btx shots to control the spasms. Right now we avoid anything above the eye to avoid ptosis, and the spasm control is less effective than I am hoping for. Link to the site included below.
http://eyeglassrepair.net/_wsn/page3.html shows a good picture Will keep you posted Peter |
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Posted by: Lee Ann ® 12/25/2007, 21:40:01 |
Hi Peter Those glasses are very similar to the ones I have. They have to be metal frames because of the ptosis crutch. My quesion is the add states he measures each individual...so if you're sending your glasses to him, how can he customize them for you??? Also, if you go to the top of the board and click on photos, the click photos again then non-surgical aids, you'll find a pair of the glasses also.. The glasses I saw someone had at the conference in Florida this year were tinted, so you could not see the crutch as easily which I suppose any pair can be tinted. From what I remember the crutch was not as thick or maybe it's that I'm remembering it wrong. The crutches are helpful but not what I expected. I wish you much luck Peter and please let us know how they turn out for you... Oh. also, I have alot of excess (baggy skin) on my upperlids so I have plenty of skin (unfortunately) to place the skin over the crutches. Good Luck Again
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Posted by: pdb ® 01/01/2008, 19:43:49 |
Hi Lee, The man worked miracles as my specs were titanium, not the easiest stuff to make the attachment to. The measurements were taken as per his instructions, but by me (he's half a continent away from me). I also sent photos of the measurement process and the glasses in place on me. Remarkably, he turned the job around in under 24 hours and I had them back really quickly. The only issue is that the glasses sit a little too far down my nose now, as I probably got the measure from frame to eyelid a little too long. I'll talk to him tomorrow about whether I can do any adjusting without imperiling the whole structure. Also as I used old glasses for the experiment, I will need to get the lenses updated to my current prescription to improve vision. Then I will get the ptosis crutches on my current glasses so I have a spare pair (I have a wierd, strong correction, so I can't resort to el cheapos if I lose the real ones). As far as how they look is concerned, well, an observer can see them, and they are what they are - but as I wear an Aussie hat and FL41 clip-ons everywhere (and sometimes Fitovers) to avoid photophobia, I look odd all the time (grin). But hey, people never used to remember me - now I get complements on my hat all the time, and get remembered, so it's not all bad! See separate post on how well they are working for me (answer, so far, great!) Cheers Peter |
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Posted by: pdb ® 01/01/2008, 19:26:23 |
Got my specs with ptosis crutch attached last night. See other posts in this thread for info on those. Findings so far (hey after 24 hours we know everything, right?):
1) Definitely inhibits closing of the eyelids in cases of minor spasms. Example: the corridor lighting in our apartment block normally guarantees that I have a spasm event before I reach the end of the corridor - it's the wavelength of the money saving fluorescent bulbs that triggers my photophobia. With the ptosis crutch in place, I've now made several traversals with no incident - no eye closures, no banging into the wall, no stops to wait for vision recovery. 2) around the house, no/few spasms, almost no eye closures. 3) I haven't driven a car (emergencies aside) for 3 years because of eye closures. Today I drove for most of the day, with not a single problem. You have no idea how liberating that is - or maybe you do... 4) since coming home this evening, and switching to my regular glasses (I had the ptosis crutch put on the old ones), spasms have returned quite strongly, even as I work on this. (Newer glasses have updated lenses, better for reading and computer work than those with the crutch). Now switched back to the specs with the crutch - and the spasms and closings are largely gone. OK, so that's day 1, and tomorrow it may all fizzle out, but here's a theory on why it seems to be working. First of all, in my case, I seem to have apraxia - by which I mean the eyes close and stay closed for a while after a light spasm, provoked by nothing, or lights, or something else. I can't open the eyes with the eyelid muscle, but I can easily open them with a finger. So the ptosis crutch achieves the equivalent in terms of holding them open. Also, I use the trick of pushing on my eyebrows at the side to hold my eyes open, e.g. watching TV or a concert or a movie. Works reasonably effectively. With the ptosis crutch pushed in reasonably closely, it seems to achieve the same effect, hence apparently reducing the incidence of spasms, or more likely, keeping the lids up during the lighter spasms, just like my fingers do. Next steps: see if it stays this way, or fades over time. Then, if it is holding, my next btx injections locations can be changed, because I will be able to get shots in in the eyelids above the eye, and in the forehead, that should help control the spasms. I can't get shots there now, because they cause real ptosis from day 6 lasting 40 or so days. With the crutch, I believe we can go for much stronger shots into the orbicularis oculae above the eye, and manage the ptosis through the crutch and iopidine. Fingers crossed folks! |
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Posted by: Linda M ® 01/01/2008, 21:54:52 |
It sounds like the Ptosis crutch helps alot with the spasms. How does it work when you blink? Do you blink as normal or take them off after awhile? Happy New Year and thanks to everyone for your imput. |
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Posted by: pdb ® 01/02/2008, 02:19:55 |
I would not have ever described my version of bleph as multi blink orienbted - and as the ptosis crutch seems to allow for blinking of a normal kind - i.e. it's not so strong in it's pressure as to prevent blinking for lubrication etc, it doesn't seem to impact "normal bleph" blinking. And you can push the glasses forward to allow the occasional needed blink, that seems to deal with this. All very contradictory I am sure. but that's one of the delights (sorry) of the enigma of BEB.
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Posted by: Lee Ann ® 01/05/2008, 20:56:09 |
Hi Peter,
Sorry I didn't respond sooner but my computer was down for a while... I'm sooooooo, soooooooooooo, sooooooooooooo glad the ptosis glasses are working for you. You haven't updated us and am curious if you still are having such good results with them. Amazing you can measure yourself for the crutches and just send the glasses in. Did he charge very much??? I can't believe that after not driving for 3 years you were able to...What a blessing.... Keep us posted, please Lee |
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Posted by: pdb ® 01/06/2008, 21:17:07 |
BEB is a mysterious thing, so it contrives to fool you occassionally by behaving itself...so my first day with the ptosis crutch was the best so far. So I now know that if I have a bad day, with lots of major spasms, the crutch doesn't do that much for me, but on a better day, or before I get tired in the evening, i.e. when I'm having lighter crunches, it helps a lot. So I'm in a position where I certainly wouldn't say I can drive any time I like yet, but I can some times, and I can tell when, so at least that's an improvement. The opportunity here is as I said elsewhere, I don't get any shots above the eye now because of ptosis, and that's my guess as to why btx doesn't help my spasms that much. Next time (a couple fo weeks away), I'll get the shots there and hope the result is ptosis managed by the crutch and lighter or reduced spasms, which should be on average a better result over all. Incicentally I can adjust the crutch with needle nose pliers, so when I get my second pair done I'll be able to send in more accurate measurements. Cheers Peter |
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Posted by: spirit ® 06/22/2008, 14:47:06 |
Hello and God Bless, I know you've been through absolute hell, and it looks like you're coming out on the other side. Your message is parallel to what I've been going through for the last 6 (yes 6) years. I have Blepharospasm with the dreaded Apraxia kicker,hell of a combo,yes? I have dealt with the "finger" wall and pole collisions,human knockdowns ,missed work.12 different Meds,and in April ,surgery.What worked was faith in God,and a little pair of goggles my wife bought for me to play around with that I somehow fashioned into a band that holds my eyelids up.It was almost like a miracle. In short this is what I need from you PLEASE! Imformation on how you got those Ptosis crutch additions to your frames. Thanks PS Let me tell you this to go through what you(we)have makes you a true warrior .So far so good. |
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Posted by: pdb ® 06/22/2008, 20:43:28 |
You've certainly dug back a bit into postings on the board to find that one! I've posted more recently at http://www.blepharospasm.org/forums/beb/posts/61823.html
To recap. I Google searched ptosis crutch, found "Rick's Welding and Eye glass repair" site, and called him. He made them for me based on measurements he told me he needed. I subsequently put together diagrams and a note on how to do those measurements yourself. Give me your email address in a response and I will send them to you. Others have found local opticians that know how to get them, and it's probably better to have someone like that get them for you, if you can find one that is familiar with the device - but my mate Rick has done a great job for me and some others on this board, so it's safe to go that way also. Note there is an alternative approach, known as the Lundy Loop, named after a gentleman in the UK that had Myasthenia Gravis, who made his own device to solve this problem. Again, Google search the term and see what you find. As an update, it now being nearly 6 months since I got the ptosis crutch, I can say the following things about it (all to do with how it works for me, could be different for others): 1) It solves the ptosis problem
I can only say, go for it. They cost me about $75 give or take, and the value for money is incalculable. Cheers Peter Modified by pdb at Sun, Jun 22, 2008, 20:47:18 |
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