BEBRF maintains relationships with many renowned blepharospasm doctors to which we can refer patient questions. Here is where you will find an ever-changing group of questions and answers provided over the years.
If you have a question for which you would like us to try and find an answer, please email bebrf@blepharospasm.org. If your question is selected and addressed from among the many we receive, the answer would appear below, on the BEBRF Facebook page, or in the Newsletter.
Disclaimer: Neither the BEBRF nor members of the BEBRF Medical Advisory Board has examined these patients and are not responsible for any treatment.
Ask the Doctor
Dr. Hemmati: Soft contacts can provide some relief in healing processes, much like a bandage. It can also feel like there is more drying. Try soft contacts before the more expensive scleral or Prose lens.
Dr. Weikert: Soft contacts may be useful for treating some surface issues and are specifically recommended in those cases.
Dr. Yen: Yes, the myectomy can be done with blepharoplasty. If there was good levator function before surgery, there should be no change after the surgery. Conversely, if there were levator function problems before, those problems can often be corrected during surgery. The limited myectomy is done more often than the full myectomy.
Dr. Miocinovic: Yes, because a lot of our patients with Parkinson’s disease actually do have dystonias of various kinds including blepharospasm, and in those cases, both usually do get better. The same target in the brain is used for both, with the same two electrodes.
Dr. Kim: Lasik surgery is not necessarily contraindicated, but typically after Lasik dry eyes do get worse. They do a very thorough pre-operative evaluation for Lasik to determine that. So, you could be a candidate potentially if it’s not too severe.
Dr. Miller: When we first started using what was at the time botulinum toxin, we didn’t know how often we could use it. So, we worked out with Medicare that the average was three months, but we know that some people need it every six weeks. If they need it more frequently than that, then we’ll go on to oral medication or surgery or a combination. Under Medicare, it might vary from state to state as these things are managed at that level. In Maryland, we can give it as often as we need to. Although I sometimes have to talk peer to peer with the insurance company personnel because they don’t understand why somebody needs it every 6 or 7 weeks or 8 weeks and why some people go 6 months. So as we’ve stressed this morning, everybody is a little bit different but the average is 3 months.
Dr. Miller: This is called diffusion, and it definitely spreads – in a good way sometimes but in a bad way other times. That’s why some of you have developed drooping of the eyelids. I don’t think it’s necessarily too deep or too superficial; it’s just that it diffuses. In addition, I have a fair number of patients who have asked me to give less in the lower lid for exactly that reason. You can give it right up under the lid and the patient feels that the cheek falls and then their smile isn’t as good. Then you have to try some variation like a smaller dose or a single central dose. Again, you’ve got to work with each other.
Dr. Scorr: There is one trial now of a drug called Perampanel, which is approved for treating epilepsy. There’s a theory that it might help dystonia in conjunction with botulinum toxin, and several centers are enrolling now.
Dr. Miller: No. I’ve been giving botulinum toxin since the early 80s and some of my patients have been on it for 35 years. You don’t become immune to it, especially at the doses that you all get as blepharospasm patients. Even patients who receive it for cerebral palsy and things like that or torticollis, who have much higher doses, in general, don’t become immune. Antibodies stop things from working but even many people with antibodies in their blood continue to respond to botulinum toxin. I don’t believe I’ve ever had a patient who stopped responding to the drug. You might need a larger dose over time, but you don’t become immune to it.
Dr. Soparkar: Yes. The reason is you are decreasing the inflammation on the eyelids. I’m not sure if oral steroids which have systemic side effects are the best way to manage that. Think more about local, topical treatments to decrease your inflammation.
Dr. Murdock: This is a decision that should be made with your surgeon. While it may lift the brows and possibly help to open the eyes, beware of frontalis antagonist blink syndrome. This could worsen dry eyes, thus exacerbating blepharospasms.