Another question


Posted by Peter Hillier , Apr 01,2001,06:24   Archive
This one concerns the eyelids, as Yvonne's eyes were clamped shut for about eighteen months prior to diagnosis the only way she could get any sort of vision was by holding one eye open at a time, this has resulted in the upper eyelid skin stretching and she now has enough spare to make a set of luggage, has anyone had similar and did you have the excess removed and was it benificial please?
Also, can anyone tell me if you have any spectacle frame manufacturers over there who can fit the Ptosis props to metal frames as they only fit to the plastic types over here?
Thanks everyone and the weather here on the Isle of Wight is thick fog which clings to you like an ex-wife.



Recommend Current pageAuthor Profile
Replies to this message


Re: Another question

Re : Another question --- Peter Hillier
Posted by Delaine Inman , Apr 01,2001,10:10 Top of Thread Archive
The stretching of the skin of the eyelid is a common problem with BEB. When I had a partial myectomy the doctor trimmed a little of that off to help improve vision.
We've discussed the eyeglass crutches on the BB and I know some people use them. I can't help you on that. You might do a BB search or someone else will address that.
Sunny skies here in Tennessee



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Another question

Re : Another question --- Peter Hillier
Posted by Shirley-Arkansas-USA , Apr 01,2001,22:04 Top of Thread Archive
Hi Peter,
The muscle spasms and the pulling and squeezing that are the symptoms of blepharospasm will cause this stretching and thus loose skin. It would improve the condition somewhat in that she could possibly get her eyes to open easier. The problem is that within a short time, due to the continued symptoms the problem will reoccur. If she has really good luck with the botox and it controls her symptoms, it would take longer for the skin stretching to occur again. But in time, it will.
When an upper myectomy is done, this loose skin is usually removed along with that procedure. In the upper or limited myectomy, the squeezing muscles are removed. Different doctors do this in different ways and take out different amounts of muscle tissue. This is not a cure but a treatment option. Most people still have to have botox after the procedure.

As far as the ptosis crutches go, what I remember hearing in the past is that individuals just went to their eye doctor or optician and talked to them about what they needed and sometimes they can be made for the individual. I don't know if there is a special place to get these or not. Someone posted pictures of ptosis crutches a year or so ago. You could do a search in the archives and possibly find them. If you can't, let us know and we'll try and locate the pictures for you.

Mindy, don't you know a little about the ptosis crutches or am I thinking of someone else? Someone on here has used them before and had there optician make them for her.

Shirley in AR.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Ptosos crutches

Re : Re: Another question --- Shirley-Arkansas-USA
Posted by MaryNY (Mary,MaryNY), Apr 02,2001,19:33 Top of Thread Archive
I'd just like to tell all of you a little story, which now seems to be fact, not known at the time. When my daughter was in school (she graduated from HS in 1980) she had to do a report on something, anything, that was different and unusual, probably an English assignment. In the "Magazine Section" of the paper one weekend was a story told in great humor of a man who had invented something for people to keep their eyes open, the reason being that they must be sleepy all of the time, couldn't do their homework, etc. Katy sent for the product, and it was a little plastic thing for each eye, with a ball on each end. She did her report. and we all had a great laugh about the device. NOW I'm thinking that the poor man probably had BEB - unknown (by me, anyway) at the time. Maybe by now he's made a fortune,calling them "Ptosis Crutches"!........who knew?? Mary



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: LONDON DYSTONIA CLINIC - PETER?

Re : Another question --- Peter Hillier
Posted by June in Toronto (June Floyd,June in Toronto), Apr 02,2001,00:14 Top of Thread Archive
I'm wondering, Peter, did you try that address of the London Dystonia clinic I posted for you? Surely they have some answers for you? Best wishes to you and Yvonne

June in Toronto




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Another question

Re : Another question --- Peter Hillier
Posted by kathy , Apr 02,2001,09:17 Top of Thread Archive
i see we have a latent British humorist writer here.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Another question/Ptsos Crutches

Re : Another question --- Peter Hillier
Posted by Mindy , Apr 02,2001,20:23 Top of Thread Archive
Hi Peter,
I went through the phone book and called eye doctors to see who knew about ptsos crutches. I let the eye doctor put them on my spare pair
of eye glasses.
He soldered the crutches to the eye glass frame.
It's thin, almost like a wire covered with clear plastic.
They're kind of flexable to place it where it feels comfotable.
They work well for ptsos, not for spasms.
The doctor said stroke patients usually wear them.
Mindy



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile