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  • BOTOX/blepharospasm alert

    As some of you know, BOTOX injections can be used to treat blepharospasm. Typically patients get injections every 3 months.

    I have heard from two different patients quite recently who experienced sudden complications from an injection - in one case, the lid froze open, causing severe pain and great risk to the cornea, and in another, there are less severe but still serious problems with lid closure. I am deeply concerned about this because it's a serious thing to have happen and if I've personally heard of two in a row, there's definitely more of it happening out there. LID PARALYSIS AND INCOMPLETE LID CLOSURE ARE NOT LISTED AS RISKS on the FDA's page on Botox nor are they listed in the Botox consent forms that I have reviewed! The closest I've seen is "droopy eyelid which may continue for a few weeks".

    If there are any more of you out there, I want to urge you to tell your doctor to report this complication to the FDA - and, in any case, please file a Medwatch report on your own just in case your doctor doesn't.

    Here is the link to the FDA site for adverse event reporting.

    As we witnessed so recently with LASIK, failure by doctors and manufacturers to report adverse events associated with drugs and medical devices has serious repercussions: (1) it cripples the FDA's ability to pursue post-market safety issues, and (2) it prevents future patients from receiving accurate information about the risks they may be undertaking.

    As conscientious consumers we need to do our part to fill the gap and to educate our doctors when necessary.

    Thanks everybody.
    Rebecca Petris
    The Dry Eye Foundation
    dryeyefoundation.org
    800-484-0244

  • #2
    superb shield

    Thank you, Rebecca, for your perpetual and intense watchfulness over every strategy that comes over the horizon. . .There is no question but that without your warning, here, the risks that Botox may potentiate for patients like us would be way below the radar. . .As always, you are an amazing shield and protector for many of us, here, who are not yet well enough to research, at a deep level, all implications of a therapy. . .
    <Doggedly Determined>

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    • #3
      Wow. Thanks for that, Rebecca! I was just reading in Newsweek a few weeks ago that Botox can cause neurological problems that doctors had not anticipated. It is believed that the injections remain local in the skin, but there is evidence that they can affect deeper tissues. So, this appears to be another warning that makes me want to stay away from the stuff!

      I appreciate your being so keenly aware of myriad things to help us keep our eyes safe!

      --Liz

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      • #4
        Rebecca,

        Thanks for the information. I am considering botox treatment within the next few weeks. My eyelids are in constant spasms, and I am desperate. My doctor told me the risks, one of them being incomplete eye closure which he said is temporary. I truly hope and pray this works for me. The spasms are more and more severe, already involving my jaw. A bad dominoe effect.

        Do you have any information about using BSL after botox treatment? I use the sclerals now for my dry eyes and it helps me tremendously. I just wonder how soon after the botox can I use my sclerals.

        Thanks.

        Heidi

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