Español/Italiano/Français/Korean
BEBRF logo Benign Essential Blepharospasm Research Foundation (BEBRF)

Home   Blepharospasm   Related disorders   Treatments   Patient support   The BEBRF   FAQ   Blepharospasm
Research
  Site Search

 What's new 
 Contact us 
 Other ways to help fund BEBRF 
 BEBRF on-line store 
 On-line resources 
 Medical Information 
 Dystonia advocacy 
 Blepharospasm Bulletin Board 
 Subscribe to newsletter 

Ask the Doctor 2016 April/May/June

Disclaimer: neither the BEBRF nor members of the BEBRF Medical Advisory Board has examined these patients and are not responsible for any treatment.

  1. QUESTION: I have been being treated for a number of years for blepharospasm with Botox. In one of your quarterly magazines it was mentioned that there might be a condition of breathing that might be affected.
    I have a breathing condition that may or may not have happened at or near the same time I was diagnosed with, dry eyes and Blepharospasm. I sometimes cannot inhale or exhale naturally. It is almost like I have to mentally force myself to breathe.
    I have had all the tests. Breathing, Echocardiogram, Stress, Pulmonary exam, speech therapist, and neurologist. All the test came back normal. I am 76 years old. There was 40% blockage in one artery. I have had a heart attack, which I have never felt any of the classic symptoms.
    My question is, Is there any connection of breathing with the Blepharospasm?

    ANSWER: The respiratory system certainly can be involved in patients with blepharospasm and other facial or neck dystonias (see the references below). Without personally examining you it is difficult to determine whether your breathing problems are part of "dystonic respiratory dysregulation syndrome" or some other problem.

    1. Mehanna R, Jankovic J. Respiratory disorders associated with dystonia. Mov Disord. 2012 Dec;27(14):1816-9.
    2. Mehanna R, Jankovic J. Respiratory problems in neurologic movement disorders. Parkinsonism Relat Disord. 2010 Dec;16(10):628-38.

    Joseph Jankovic, MD
    Baylor College of Medicine
    Houston, Texas


  2. QUESTION: I have had BEB since fall of 2013. At that time, when I smiled, my upper lip allowed my teeth to show. In January of 2014, when I first had successful Botox treatment, my upper lip has remained flat. As a result, my smile is with closed lips only. Thought it was a result of the Botox, but all docs have said not. What is your take on this? Is it the dystonia that is the cause?
    My documentation is through pictures. But, now I no longer want pictures taken. Any suggestions on how this issue can be "fixed" or treated? Botox works fairly well for the BEB, and eyes can be covered with glasses. Can't cover my mouth!! So self conscious! I am thankful it is not worse, but need to find a way to smile again. Thank you!


    ANSWER: Most patients with blepharospasm have also spasms of other parts of their face including lips. Without examining you it would be difficult to know whether the problem you describe is part of facial dystonia or some other problem. If the lip distortion is a form of dystonia, then careful injection of botulinum toxin into or close to the affected area by a skilled clinician may solve the problem.

    Joseph Jankovic, M.D.
    Baylor College of Medicine


  3. QUESTION: I recently underwent cataract surgery. The surgery was a success. (I have perfect vision in that eye) However, my surgery was a rather traumatic experience. I was given conscious sedation and a local. About half way through the surgery I felt all the pain of the surgery but was paralyzed. I also remembered everything that occurred. The pain of the surgery was such a traumatic experience that I am terrified to have the other cataract done. During the surgery, I kept telling the doctor of the pain I was experiencing. He told me he had given me the maximum amount of medication and that I would just have to bare through it as he finished the surgery. Afterwards, the doctor felt that my negative reaction was due to me having blepharospasm. I would like to know if there is a different type of sedation needed for cataract surgery when you have blepharospasm and have you ever heard of a patient feeling pain with this surgery and the conscious sedation not working? I would like to have the cataract surgery in the other eye but I am frightened that I will have the same experience.

    ANSWER: I don't know of any factor in BEB that would make conscious sedation ineffective. There are people, with or without BEB, who are more resistant to the sedation drugs and are difficult to sedate without getting doses so high that there is a problem maintaining an airway. Sometimes a modified general anesthesia without the whole throat tube (LMA) is very helpful unless the cataract surgeon is worried about any coughing, straining, etc, after general anesthesia. Some patients are not good candidates for sedated anesthesia and better candidates for a form of general anesthesia. This needs to be discussed with the surgeon and the supervising anesthesiologist.

    James Patrinely, MD, FACS

  4. QUESTION: I recently read about the procedure MRI-guided focused ultrasound that is working at stopping tremors in Parkinson patients. I would like to know if this procedure would work for BEB?

    ANSWER 1: MRI-guided focused ultrasound is still considered investigational (experimental) procedure currently being evaluated for the treatment of essential tremor and Parkinson's disease. In the future it may be also investigated in the treatment of dystonia, including blepharospasm, but it is unlikely it will be approved for this indication within the next several years.

    Joseph Jankovic, MD
    Baylor College of Medicine
    Houston, Texas


    ANSWER 2: I agree with Dr. Jankovic. It could also be said that this procedure is a non-invasive way of accomplishing what has been done for some time with either deep brain stimulation or making a small lesion deep in the brain. As these latter two procedures are not really standard for blepharospasm, similarly, focused ultrasound does not have an immediate obvious application.

    Mark Hallett, MD
    National Institute of Neurological Disorders and Stroke
    National Institutes of Health
    Bethesda, MD


  5. QUESTION: I was diagnosed with DES before the BEB took its toll on me in 2007. Then I was diagnosed with focal, oromandibular, cervical, and laryngeal dystonia.
    My vocal cords became paralyzed and 2 years ago my breathing and swallowing became difficult. Last year I had a tracheostomy. Could there be a correlation between the dystonia and tracheostomy? I'm still tracheid. Will I be tracheid permanently?


    ANSWER: The respiratory system certainly can be involved in patients with blepharospasm and dystonia of the lower face, jaw, neck and larynx. Without personally examining you it is difficult to determine whether your breathing problems are part of "dystonic respiratory dysregulation syndrome" or some other problem (see relevant articles below).
    1. Mehanna R, Jankovic J. Respiratory disorders associated with dystonia. Mov Disord. 2012 Dec;27(14):1816-9.
    2. Mehanna R, Jankovic J. Respiratory problems in neurologic movement disorders. Parkinsonism Relat Disord. 2010 Dec;16(10):628-38.,/li>


    Joseph Jankovic, MD
    Baylor College of Medicine
    Houston, Texas


  6. QUESTION: I would like to know if there is such a thing as pure apraxia of the eye. (this would be without blepharospasm or anything else) and if so is it considered a dystonia? If it is not a dystonia then what would it be classified as?

    ANSWER: Yes, apraxia of eyelid opening can exist without blepharospasm. In contrast to blepharospasm which is due to active contraction of the eyelid muscles (orbicularis oculi), apraxia of eyelid opening is manifested by inability to open the eyes (presumably because of inhibition of levator oculi, the muscle that is responsible for opening eyelids). Thus patients with apraxia of eye opening are often using the eyebrow and frontalis muscles in an attempt to open the eyes. There may be a delay of several seconds before the patients with apraxia of eyelid opening can eventually open their eyes. Many patients with apraxia of eyelid opening have associated parkinsonian conditions, such as progressive supranuclear palsy.

    Joseph Jankovic, MD
    Baylor College of Medicine
    Houston, Texas


  7. QUESTION: I just came across a website that mentioned Bangerter foil as something that might help BEB patients who have light sensitivity. I had never heard of it. What do you know about this? Is it a viable treat for BEB patients who light sensitivity?

    ANSWER: These devices are increasingly popular among the strabismologists for partial or full visual occlusion, and I've seen them used by some therapeutic optometrists. They are stick-on membranes, like Fresnel prims, that both decrease light passage through the lens and blur the image, although they are not the same as using an incorrect focusing lens. If someone with BEB is very light sensitive, they will probably do better with tear film management, polarizing glasses, tinted lenses, or maybe the FL-41 lenses. If someone wants to fully occlude vision with a semi-opaque medium, Scotch tape is cheaper and easier to obtain.

    Charles Soparkar. MD, PhD, FACS
Home > Patient Support > Ask the Doctor Index > Top of this page

Disclaimer Site map Webmaster Dedication Updated: July 7, 2016