Blepharospasm Bulletin Board

First thing to consider is, did she get ptosis from the injections - i.e. droopy eyelids, which if bad enough would be equivalent to closed eyes. Considerations re ptosis are:
a) unlikely to be completely closed
b) unlikely to range between open and closed, even if closed for 90% of the time - the droop is there or it is not if it is ptosis, from my ptosis prone experience
c) generally, ptosis clears up in a week or two or a few. It can take longer - in my case often 40 days before it is not interfering.

Second, she may be suffering from Apraxia. I won't attempt a definition of Apraxia, but the information on the BEBRF first page can lead you to good discussion and definitions of that. Botox does not necessarily fix Apraxia, but it for most folks does help with the twitching/spasms etc of the eyelids.

A consideration with all of this is how long she has had the symptoms. For many patients, the symptoms evolve over the first year or two, then settle down to a fairly steady pattern. If she is new to this then two factors have impact: has it settled down into its steady state? and, are the injection locations and strength right yet? For many patients, getting the injection locations optimized is a trial and error process that takes several rounds of injections, supported by consistent monitoring of the behavior of the eyelids by the patient. The more information the patient can give the medical professional - be thay an opthalmologist, neurologist, movement specialist or whatever, the better.

If I were you I would proceed with the botox injections – I assume the last ones were a reasonable time ago, as in 45 to 90 days ago? You do not say what the diagnosis of the contrary opinions was – if they thought it was not Blepharospasm, then what did they think it was?

I would ask all of them about Apraxia and what they suggest can be done for that.

Good luck, and let us know what happens.