Spring 2022 • Vol 42 • Issue 2
COMPARISON OF BOTULINUM TOXINS
PRESENTED BY JURIJ BILYK, MD • REPORTED BY CYNTHIA CLARK Symposium Program Director, Dr. Jurij Bilyk, discussed the three FDA-approved Botulinum Toxin’s (BoNTs)—Allergan’s Botox®, Merz’s Xeomin®, and Galderma & Ipsen’s Dysport®. As Dr. Bilyk stated in his opening, “Some things are worth hearing a couple of times, especially in medicine.” He pointed out that Juij Bilyk, MD blepharospasm has a spectrum of symptoms, from pure spasming to a combination of spasms and apraxia to pure apraxia. It seems illogical that BoNT would work on apraxia – where someone simply can’t open their eyes – but it does. Further, some people’s frustration with botulinum toxin may not be the ‘spasm’ part, but rather the ‘apraxia’ part. His purpose was to clarify how BoNTs work in the nervous system and why it is the most beneficial treatment, as well as pluses and minuses and side effects. To help us understand how BoNTs work, Dr. Bilyk used his slides to clearly explain the nerve connections and how fragile these connections are. He stated that these toxins have an affinity for hyperactive nerve terminals, which is what typifies dystonia including BEB. After injections it usually takes a couple of days for the effects to kick-in and will last from two to five months. He went on to explain that it is important for patients to understand the two stages of recovery after this initial injection with a primary effect on what he termed “nerve
sprouting” and the secondary effect when the BoNT moves into the main nerve. All FDA-approved BoNTs work this way with minimal variability. Additionally, he stressed that more frequent injections may not be the answer since the body doesn’t have time to recover. In other words, these nerve terminals are not ready to be blocked again. The BoNT has within its structure heavy and light chains that are attached by a very fragile disulfide bond that is crucial to toxin efficacy. This bond is susceptible to environmental factors such as temperature. He explained how BoNT works on and within nerves – see the slide illustration. Next, Dr. Bilyk explained the variables involved for physicians with available choices of BoNTs— including: the chemistry variants among the different types of BoNT, the “other stuff in the bottle,” the preparations or amounts of units and storage before and after preparation, and indications depending on all the variations of patients. These patient variations include geographic distribution—some areas do not have access to all approved BoNTs; and some insurance companies refuse one type to another. A final variable is the anatomy of each patient—muscle activity or pattern of spasm; muscle architecture; thickness of epidermis and skin, fascial planes and eyelid anatomical planes and just plain AGE. Dr. Bilyk explained that older patients may need less due to loss of muscle mass; therefore, less toxin may be needed. Another consideration for the variables of BoNT include injection techniques: dilution of doses, volumes of injection, CONTINUED ON PAGE 4
The Benign Essential Blepharospasm Research Foundation (BEBRF) is a nonprofit, 501 (c) (3) organization founded in 1981 by Mattie Lou Koster, a blepharospasm patient. Blepharospasm (BEB) means eyelid spasm. The eyelids unpredictably and involuntarily clamp shut in both eyes, leaving the victim functionally blind until the spasm ceases in a few seconds or a few minutes. Cranial dystonia (Meige) is a similar condition in which involuntary muscle spasms in the lower face and jaw cause grimacing and jaw movements. Blepharospasm and cranial dystonia (Meige) are classified as movement disorders and are described as focal dystonias. Hemifacial spasm generally begins as an involuntary contraction around one eye that gradually progresses down one side of the face to the cheek, mouth, and neck. It is not a form of dystonia. BEBRF is a member of the National Organization For Rare Disorders (NORD), American Brain Coalition,Dystonia Advocacy Network, Dystonia Coalition ORDR, and The Harvard Brain Tissue Resource Center (Laurie Ozelius, PhD is the BEBRF Representative). Benign Essential Blepharospasm Research Foundation 755 S. 11th St, Ste 211 Beaumont TX, 77701 P.O. Box 12468 Beaumont, Texas 77726-2468 Phone: 409-832-0788 Fax: 409-832-0890 E-mail: bebrf@blepharospasm.org Web site: www.blepharospasm.org Contributions may be sent to: BEBRF P.O. Box 12468 Beaumont, Texas 77726-2468 The Editorial Staff reserves the right to edit any and all articles. It is our editorial policy to report on developments regarding blepharospasm, cranial dystonia and hemifacial spasm, but we do not endorse any of the drugs or treatments in the Newsletter. We urge you to consult with your own physician about the procedures mentioned. The Blepharospasm Newsletter is published quarterly and mailed to patients, families, doctors, friends of the Foundation, and health care providers around the world.
Newsletter suggested donation $20.00 USD
NEWSLETTER DEADLINE DATES ISSUE
Summer Fall
COPY DUE DATE
July 1, 2022 October 1, 2022
FROM THE
EXECUTIVE DIRECTOR
The 2022 BEBRF Symposium is set for Oct. 21 & 22 at the Hilton Phoenix Airport Hotel in Phoenix, AZ, with Dr. Padma Mahant as program director. See more information on page 4 and pages 8 – 9. We hope to see you in Phoenix! Support Group Meetings are still available through Zoom. Check the BEBRF Website or Facebook page for the upcoming ones. We hope to return to in-person support group meetings in the future. Zoom meetings will also continue into the future. Advocacy BEBRF is again participating in the Dystonia Advocacy Network’s annual Advocacy for Dystonia. In addition to advocating in March for support for budgets for the NIH and the Department of Defense Peer Reviewed Medical Research Program, we will also be advocating for two very important blepharospasm treatment issues later this year. Contact me at charlene@blepharospasm.org or 409-832-0788 if you would be interested in reaching out to your congressperson and/or senators on behalf of the blepharospasm community. CONTINUED ON NEXT PAGE
PROTECTING PATIENT INFORMATION: The Benign Essential Blepharospasm Research Foundation respects the privacy of patients. Patient information is not shared outside the BEBRF organization.
TABLE OF CONTENTS Comparison of Botulinum Toxins . . . . . . . . . . . . . . . . . . . . . . 1 From The Executive Director. . . . . . . . . . . . . . . . . . . . . . . . . . 2 The 2022 BEBRF Symposium Is On!. . . . . . . . . . . . . . . . . . . . 4 Medical Marijuana for Blepharospasm . . . . . . . . . . . . . . . . . . 5 Easy Way You Can Fundraise . . . . . . . . . . . . . . . . . . . . . . . . . 6 Coping With Dry Eyes And Photophobia . . . . . . . . . . . . . . . . 7 2022 BEBRF Phoenix Symposium Speaker Bios. . . . . . . . . . 8 BEBRF 2022 Phoenix Symposium Schedule . . . . . . . . . . . . . 9 BEBRF 2021 Symposium 1st Q&A Session . . . . . . . . . . . . . 10 BEBRF 2021 Symposium 2nd Q&A Session. . . . . . . . . . . . . 12 Support Group Meetings & Photos. . . . . . . . . . . . . . . . . . . . 13 BEBRF Has Fundraising Merchandise . . . . . . . . . . . . . . . . . 16 2
The opinions expressed in the articles in this newsletter are those of the authors and do not necessarily reflect the views of the BEBRF, publisher of the BEBRF newsletter.
Cranial Dystonia Doctors BEBRF has a very good database of doctors who treat blepharospasm, and we are seeking to enhance it with doctors who also treat cranial dystonia (also referred to as Meige). If you have cranial dystonia and are getting good medical treatment, please email or call me at the address/phone number above so that we can note the doctor in our database. Upcoming Webinar Many blepharospasm patients call the BEBRF office for advice. My BEBRF colleague Angel Roberts and I have put together a program called How to Get the Most Out of Your Injections We will be presenting this Webinar in June. Check the BEBRF website and Facebook page for more details as they are posted. Mid-Year Appeal The Mid-Year Appeal is underway. Please consider making a donation. We hope to recognize all of our 2021 donors publically in the next Newsletter. Please be sure to respond to our requests for permission to list your name. BEBRF attends the NANOS Academy BEBRF attended the North American Neuro-Ophthalmologists Society (NANOS) Annual Academy in Austin, TX in February. In addition, we will also attend the American Academy of Optometry in San Diego in October. The purpose for this attendance is to ensure as many medical professionals as possible are aware of BEB, which will lead to earlier diagnosis and earlier treatment. In addition, the BEBRF presence at these academies provides the opportunity to give the treating doctors the patients’ perspective on their BEB care. The picture below shows Dr. Jane Boyd and me as we represented BEBRF at the NANOS Academy.
BEBRF BOARD OF DIRECTORS
Heidi Coggeshall, President/Treasurer* Tishana Cundiff, Vice PresidentEducation & Support* Peter Bakalor, Vice PresidentDevelopment* Jane Boyd, MD, Vice PresidentPhysician Outreach* Charlene Hudgins, Executive Director/Secretary Cynthia Clark* Robert Campbell, PhD* Jonathan Healy Carlas Powell* Bryan Renehan*
EX OFFICIO
Mark Hallett, MD, Advisor *Patients
MEDICAL ADVISORY BOARD
Mark Hallett, MD, Chief, Human Motor Control Section, NINDS, NIH, Bethesda, MD Brian Berman, MD, Richmond, VA Andrew Harrison, MD, Minneapolis, MN Joseph Jankovic, MD, Houston, TX Hyder A. “Buz” Jinnah, MD, PhD, Atlanta, GA Laurie Ozelius, PhD, Boston, MA Sarah Pirio Richardson, MD, Albuquerque, NM Charles Soparkar, MD, PhD, Houston, TX Mark Stacy, MD, Greenville, NC Julie Woodward, MD, Durham, NC
DISTRICT DIRECTORS & EMAIL
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Bryan Renehan, Eastern C T, DE, DC, FL, GA, MA, MD, ME, NH, NJ, NY, NC, PA, PR, RI, SC, VT, VA, WV dir-e@blepharospasm.org Tishana Cundiff, Central AL, AR, IL, IN, IA, KS, KY, LA, MI, MN, MS, MO, ND, OH, SD, TN, TX, WI dir-c@blepharospasm.org Cynthia Clark, Western AK, AZ, CA, CO, HI, ID, MT, NE, NV, NM, OK, OR, UT, WA, WY dir-w@blepharospasm.org
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COMPARISON OF BOTULINUM TOXINS depth of injection, number of injections, and the injection pattern. There is a wide variety of injection patterns. A doctor will get comfortable with an injection pattern that works for them. One thing to be aware of is if you inject a muscle enough you temporarily paralyze it which could lead to a certain amount of atrophy, which could diminish the muscle mass, which could lead to changes in injection methods. Two simple rules: 1. Higher doses of BoNT result in higher efficacy, BUT also result in higher adverse events such as droopy eyelid, double vision, lagphthalmos, and dry eye. 2. Higher volumes of BoNT at each site result in more diffusion, with higher adverse events. Dr. Bilyk stressed that all FDA-approved BoNTs, especially the three he prefers – Botox, Xeomin, and Dysport – have similar efficacy—one is not better than the other. When it comes to mixing and matching, however, there are important considerations. Botox and Xeomin have a more equivalent ratio 1:1—1.2; Botox/Xeomin to Dysport ratio is higher at 1:3—4, and Dysport may have a wider
spread than either Botox or Xeomin. According to Dr. Bilyk, a fourth mix/match option, Myobloc® which is a newer botulinum toxin B, is far too difficult, presenting a Botox to Myobloc ratio of 1:24—100! Dr. Bilyk said his general rule is that switching from Botox to Xeomin is much easier than the others. Where a doctor injects matters. Studies show that injection in the preseptal region of the Orbicularis Oculi muscle have about an 86% effectiveness rating. However, if you move closer to the lash line and inject in the pretarsal region, the effectiveness rating rises to 96% -- it also leads to longer duration and fewer adverse events. In conclusion, several adverse but temporary effects were cited ranging from ptosis and dry eyes to blurred vision. Two most common are ptosis (drooping of eyelid) and lagophthalmos or incomplete blink. Dr. Bilyk stressed “everybody gets adverse effects sooner or later and to be careful not to panic—you or family members—they do go away!” His full presentation can be found on our website and is both highly informative and entertaining.
THE 2022 BEBRF SYMPOSIUM IS ON! The 2022 BEBRF Symposium is scheduled for October 21 & 22 at the Hilton Phoenix Airport Hotel in Phoenix, AZ. Neurologist Dr. Padma Mahant is the Program Director, and she has put together an educational and enlightening slate of speakers. Please see pages 8 & 9 for speaker information and the Symposium agenda. The Symposium is BEBRF’s major annual educational event. Many who attend learn useful information for living with their blepharospasm. Friday evening, Oct. 21, BEBRF hosts a Meet and Greet, with delicious appetizers and a cash bar, to give the patients in attendance a chance to meet, share, and socialize with each other. Both the Meet and Greet and the Symposium the next day are free to attend, and the Symposium includes complimentary breakfast and lunch. At the 2021 Symposium in Philadelphia, BEBRF also put together a Saturday night post-Symposium outing for those who wished to participate, and there will be a similar outing in Phoenix. In addition, BEBRF has ne-
gotiated a special room rate for those who come from out of town. To register for the Meet and Greet go to this web address: https://bebrf.app.neoncrm.com/eventReg. jsp?event=26& To register for the Symposium go to this web address: https://bebrf.app.neoncrm.com/eventReg. jsp?event=25& If you would prefer not to register online, simply call the BEBRF office at 409-832-0788, and the staff will help you register for the Meet and Greet and the Symposium. If you would like to reserve a hotel room call 480804-6095 (be sure to tell them you are with the BEBRF Symposium) or go to this web address: https://www. hilton.com/en/attend-my-event/phxahhf-bebrfcc732da0-8afa-4e53-82f7-9b4c8330a925/ All of the above registration/reservation links are available from the BEBRF Website.
See you in Phoenix! 4
MEDICAL MARIJUANA FOR BLEPHAROSPASM (AND A BIT ON TRANSCRANIAL STIMULATION AS WELL) BRIAN D. BERMAN, MD, MS • REPORTED BY BRYAN RENEHAN
This presentation: • Discussed the history and use of medical marijuana, • Reviewed the potential of cannabinoids to treat blepharospasm, and • Provided update on magnetic and electrical stimulation approaches for blepharospasm.
antipsychotic and suppression of muscle spasms. Current uses of THC are as a painkiller, anti-inflammatory, antioxidant, euphoriant, and suppression of The Cannabis plant was cultivated from prehistoric nausea and vomiting. times in China, India, Egypt and was planted in As for safety, it is Virginia in 1611, and in Plymouth Colony in 1632. The believed that the use of plant has many chemical compounds, but our concern CBD and THC is less is with Tetrahydrocannabinol (THC) which it has in addictive than many Brian D. Berman, MD, MS high concentrations and has a major psychoactive other drugs including component and Cannabidiol (CBD) which is up to 40% alcohol and more on par with caffeine. of plant’s extract and does not cause a high. When using these compounds, the reported side The medical literature shows that as early as effects include redness of the eyes, increased 1842 the plant was used as an analgesic and appetite and thirst, decreased salivation, increased anticonvulsant. Over the years, it was used to treat heart rate and blood pressure, slow heart rate and insomnia, neuralgia, dysmenorrhea, and migraines. low standing blood pressure (high doses), urinary Its use began to be outlawed with the Marijuana frequency, decreased intraocular pressure, euphoria, Tax Act, 1937 which removed 28 relaxation, dysphoria, anxiety, cannabis-containing medicines panic, subjective time slowing, from the U.S., and it eventually depersonalization, altered . . . it is believed that the became illegal to possess with sense of body proportion, the listing of the plant in the auditory/visual illusions and use of CBD and THC is less Controlled Substances Act, 1970 hallucinations, impaired balance addictive than many other – Schedule I. and coordination, and impaired In recent years, most states memory and problem solving. drugs including alcohol and have lessened restrictions on the Cannabinoid studies in dystonia more on par with caffeine. use and possession of Cannabis. have been limited. They have There are currently prescribed been limited in scope and in some medications on the market reported cases only dealt with one including Dronabinol (MarinolTM) patient. The conclusion from the a Synthetic THC for Nausea, appetite stimulation, studies is that Cannabinoids seem to be effective, but MS pain; Cannabidiol (EpidiolexTM) a CBD extract for further studies are required to determine their role as TM Epilepsy (Dravet, LG) and Nabiximols (Sativex ) a 1:1 complementary treatment in dystonia. THC:CBD for Pain in MS and cancer. There is currently an ongoing study funded by Current uses of CBD are as a painkiller, antiBEBRF -2019 BEBRF Research Grant Effect of Noninflammatory, antioxidant, anxiety reducer, psychoactive Cannabidiol as an Adjunct to Botulinum CONTINUED ON NEXT PAGE
PLEASE REMEMBER BEBRF IN YOUR WILL 5
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MEDICAL MARIJUANA FOR BLEPHAROSPASM - A BIT ON TRANSCRANIAL STIMULATION Toxin in Blepharospasm - a prospective double masked cross-over study with Investigators Rona Z Silkiss, MD, FACS, Arvind Chandna, MD, DO, FRCS, FRCOphth, Christopher Tyler B.A., M.Sc., Ph.D., D.Sc., and Jayson Koppinger, MD. The current recommendation is that THC and CBD are generally safe to try but with some caution. Start low and go slow. Start with 100% CBD or low concentrations of THC and be aware of adverse effects, be aware of drug-drug interactions and be cautious about tolerance and dependence. A BIT ON TRANSCRANIAL STIMULATION Transcranial Stimulation is the use of magnetic energy or electrical stimulation of the brain from outside the scalp as opposed to deep brain stimulation (DBS) which is a major operation to insert electrodes into the brain. DBS has shown that it provides substantial relief for about 50 % of the patients who are getting 50% or more relief from Blepharospasm motor symptoms and severity, but like any major surgery, it has potential side effects such as infection and the need to replace he batteries, which may require additional surgery. The benefit of Transcranial Stimulation is that it is not an invasive procedure and does not carry the risks associated with DBS surgery.
Transcranial Magnetic vs Electrical stimulation. Transcranial Magnetic as suggested uses magnetic waves to stimulate the brain. No adverse side effects were observed with the use of this therapy. Transcranial Magnetic stimulation with blepharospasm patients showed some improvement in symptoms but the improvement did not last very long. 15-minute sessions only showed improvement for a few days as opposed to six or more weeks with botulinum toxin injections. When administered six weeks after injections the improvement lasted a while longer but not anywhere as long as botulinum toxin. Electrical stimulation uses either direct or alternating current to stimulate the brain. Two case studies seem to indicate that this direct electrical stimulation to improve blepharospasm symptoms seemed to work. Being a one patient “case study” however, makes it the least reliable research. As a result, more research is necessary and is in the works. In 2018, BEBRF Research Grant was funded for “Non-invasive inhibitory neurostimulation for the treatment of blepharospasm: A pilot study” with Investigator Brian D. Berman, MD, MS. The results of this study have not yet been completed and are expected soon.
EASY WAY YOU CAN FUNDRAISE! Facebook has made it very easy for you to put on a fundraiser for BEBRF. Many people commemorate their birthdays by holding a Facebook fundraiser for a non-profit charity, such as BEBRF. Consider doing this for BEBRF on your next birthday… or anniversary… and/or any other special event you would like to celebrate. If you would like information on how to do this successfully, please contact the office at 409-832-0788. BEBRF would like to acknowledge the following people who have held birthday fundraisers in the past year. The amount of money they raised ranged from $0 - $525, for a total of $4,928. Imagine if more people did this. Imagine if a LOT of people did this… Again, a very special thank you to the following: • • • • • • • • • • • 6
Shelley Anderson Peter Bakalor Jon Regina Bodzinski Fran Bruney Alicia Burton Clara Correll Pat DeMars Betty Carter-Craig Deppert Jovonda Gordon Susan Marie Haines Dan Irving
• • • • • • • • • •
Mandi Hart Jackson Britney Jones Jacquelyn Kennedy Evangeline Kessler Ilana Schwager Knopfelmacher Lea Krause Maureen McGannon Susan McQueen Nye Sean Pate Tamikio Nolan Roberson
• • • • • • • • • •
Angel Roberts Frances Rodrigues Robin Sommers LuAnn Tanzilli Mary Kathleen Theil Corrie Thomann Carrie Fucilla Thomas Sue Wong Sue Rogers Zimmerman Stephen C Zoeller
COPING WITH DRY EYES AND PHOTOPHOBIA PRESENTED BY ADITYA KANESA-THASAN, MD | REPORTED BY BRYAN RENEHAN In plain English, “Dry eye can be caused by many factors which disrupt the normal balance of the tear film resulting in ocular discomfort. The Spectrum of Dry Eye is from the Aqueous Deficient (low production of tears) to Evaporative (early evaporation of tears) or a mixture of both. Rather than using “dry eye” as a catchall description, a more apt description may be “tear imbalance” or “Ocular Discomfort” to describe the condition. In addition, the vast majority of “dry eye” is related to tear evaporation and the quality of the tears. The Spectrum of Dry Eye definitions: • TBUT (Tear Break Up Time) – The amount of time it takes the tears to evaporate between blinks. Normal is greater than 10 seconds. • Tear Osmolarity – A measure of how concentrated the tears are. Higher numbers of tear osmolarity mean there is less water in the tears. • Tear Film – The layers of tears which covers the eye surface. There is an oil layer and a combined water and mucous layer, and both are important. This needs to be robust and protective of the eye surface. The vast majority of “dry eye” is related to tear evaporation and the quality of the tears. These evaporation/quality issues are caused by things like low humidity, high wind, or temperature, or Meibomian gland disease. To accurately diagnose dry eye, we first look for symptoms include tearing, burning, itching, light sensitivity, redness, intermittent blur, and heavy or gritty eyes. We start with the patient questionnaires. Then in the clinic we can use Dye Staining, Schirmer Testing to see amount of tear production, MMP9, and test Tear Osmolarity. Lastly, we can use various diagnostics depending on the case, including Topography, Epithelial Mapping and Meibomography. Studies of dry eye and blepharospasm patients showed that in some patients the Botox treatment helped the patients dry eye symptoms while others see no relief, and in some cases, the condition is worse. Initial Treatment in most cases consists of use of artificial tears, but since the types of artificial tears vary, it is often useful to try several types to find what works. The most important treatment is warm
compresses for 10 to 15 minutes at a time to help oil flow. Eyelid scrubs (such as OcuSoft Plus, Avenova, SteriLid) help remove debris around the lashes that may cause some inflammation. Artificial tear ointment can help some patients at bedtime. Moderate Dry Eye Aditya Kanesa-Thasan, MD Treatment may include preservative free artificial tears, anti-inflammatories (such as Restasis, Xiidra, Cequa ), topical steroid pulse, punctal plugs, Omega -3 supplementation, or Doxycycline/Azithromycin. The anti-inflammatory medications take several months to work so you must stick with them to see any results. Severe Dry Eye Treatment includes eyelid thermal pulsation (i.e., Lipiflow ), punctal cautery, Autologous Serum Tears, Amniotic Membrane, Scleral/PROSE lenses, and targeted surgical treatments. Lagophthalmos is the incomplete or defective closure of the eyelids often after Botox treatments. This leads to the inability to blink and effectively close the eyes, which can lead to corneal exposure and excessive evaporation of the tear film. Treating Lagophthalmos after Botox includes using preservative free artificial tears, topical ophthalmic ointments, tape tarsorrhaphy, moisture chambers (goggles especially at bedtime) and glue or suture (in severe cases). Treating Photophobia in Blepharospasm is helped by wearing glasses with a FL-41 tint, which can show significant benefit over standard gray or rose-tinted lenses. Those wearing these glasses showed less fluorescent sensitivity, tearing, and blinking. In summary, there is overlap between dry eye disease and blepharospasm, with evidence of two-way exacerbation of either disease. Botox can significantly improve blepharospasm and can improve signs of dry eye in some patients but in other cases can exacerbate the symptoms. Combined treatment with Botox and dry eye treatments can improve quality of life and restore function.
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2022 BEBRF PHOENIX SYMPOSIUM SPEAKERS Padma Mahant, MD, Program Director, is a Movement Disorders Neurologist with the Barrow Neurological Institute Movement Disorders Program, Department of Neurology, as well as Foothills Neurology, a private practice in Phoenix. She also serves as Clinical Assistant Professor in Neurology at the University Of Arizona College Of Medicine. Dr Mahant graduated with honors from the Medical College of Pennsylvania and completed her residency in Neurology at the University of Rochester. She then completed a fellowship in Movement Disorders at Barrow Neurological Institute. She has contributed to clinical research in Parkinson’s disease, blepharospasm, and motor control research. She is a member of the Movement Disorder Society, the American Academy of Neurology, and the Alpha Omega Alpha Medical Honor Society. Dr Mahant has also served as an investigator for the Parkinson Study Group and as clinical faculty for ASU’s Center for Adaptive Neural Systems. She regularly speaks for patient and physician groups on topics related to movement disorders, including two prior BEBRF Symposiums, and her clinical practice is grounded in a comprehensive and compassionate approach to patient care. Dr. Mahant is honored to be a part of the BEBRF community and to serve as Program Director for the 2022 BEBRF Symposium. Johan E. S. Samanta, M.D., is a Movement Disorders Neurologist in private practice in Phoenix, AZ. In addition to his busy clinical practice, he remains actively involved in academic medicine as Clinical Associate Professor of Neurology at the University of Arizona College of Medicine in both the Tucson and Phoenix campuses. He received his medical degree from the Medical College of Pennsylvania in Philadelphia before completing an internship in Internal Medicine at St. Joseph’s Hospital and Medical Center and a residency in Neurology at Barrow Neurological Institute in Phoenix, Arizona. He completed his postgraduate training as the Evelyn Kossak Movement Disorders Fellow at the Muhammad Ali Parkinson Research Center at Barrow Neurological Institute in 2000 before joining the Barrow faculty and serving as the associate program director for the neurology residency. Since moving to private practice in 2003, he has maintained his focus on movement disorders with an emphasis on the diagnosis and management of Parkinson’s disease, dystonia, and tremor. He has over 25 years of experience in the therapeutic use of botulinum toxins for movement disorders and has performed over 22,000 injection treatments over that time. Obada Subei, MD, obtained his doctorate in medicine at the University of Illinois at Chicago. He pursued his interest in Neurology at the University of Arizona at Phoenix and completed a fellowship in the field of Neuro-Ophthalmology at Michigan State University. Dr. Subei is well known for his compassion for his patients. He has dedicated his career to helping people maintain their vision and treat those with rare and unique disease entities. He is always advocating for his patients’ well-being.
Virgilio Gerald H. Evidente, MD, is a movement disorders neurologist, and is the founder and current director of the Movement Disorders Center of Arizona. Dr. Evidente received his fellowship training on Movement Disorders at the Mayo Clinic in Arizona, and founded and headed the Deep Brain Stimulation program at the Mayo Clinic in Arizona from 2001 to 2012. He is a fellow of the American Academy of Neurology, and a member of the International Parkinson and Movement Disorder Society. He has also served as a Principal Investigator, and Co-Investigator for numerous clinical trials, regarding treatments for Parkinson’s disease, Atypical Parkinsonism, blepharospasm, cervical dystonia, genetic dystonia, tremors, spasticity, cognitive impairment, psychosis related to Parkinson’s, Huntington’s disease and ataxia. His main interests are deep brain stimulation for movement disorders, botulinum toxin therapy, and movement neurophysiology. He has over 100 peer-reviewed publications in the various aspects of movement disorders.
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Francisco Ponce, MD, is an Associate Professor, the Chief of Stereotactic and Functional Neurosurgery, and the Program Director of the Neurosurgery Residency at the Barrow Neurological Institute. He specializes in DBS for Parkinson’s Disease, essential tremor, and other movement disorders. He is a leader in the widespread adoption and acceptance of “asleep” DBS – an advance that has standardized the DBS surgery, rendering it more comfortable, safe, and predictable. Through outreach and education, he seeks to increase awareness and accessibility of this proven therapy to patients and neurologists. Indu Subramanian, MD, received her medical degree from the University of Toronto. She completed her neurology residency and Movement Disorders fellowship training at UCLA. Dr. Subramanian has stayed on at UCLA and is now a Clinical Professor of Neurology. She established the movement disorder clinic at the West Los Angeles Veterans Administration and has assumed the position of the Director of the South West PADRECC (Parkinson Disease Research, Education and Clinical Care) Center of Excellence in Parkinson Disease. She has developed a strong interest in integrative medicine with a special interest in Yoga and Mindfulness. She underwent a 200 hour yoga teacher training and studied mindfulness at the VA with J.G.Serpa and Christian Wolfe through Insight LA. She is designing a yoga teacher training program for yoga instructors who are interested in working with PD patients. Dr. Subramanian is board certified in Integrative medicine. She is also passionate about palliative care in Parkinson Disease. She is doing a contemplative fellowship for health care providers through the New York Zen Center and is an AAN Palatucci Fellow.
BENIGN ESSENTIAL BLEPHAROSPASM RESEARCH FOUNDATION SYMPOSIUM SATURDAY, OCTOBER 22, 2022 - PHOENIX, ARIZONA PROGRAM DIRECTOR: PADMA MAHANT, MD
7:00 a.m.
REGISTRATION AND COMPLIMENTARY CONTINENTAL BREAKFAST
8:30 a.m.
WELCOME REMARKS
8:45 a.m.
Overview of Blepharospasm Risk Factors, Padma Mahant, MD Diganosis, and Treatment
President & Executive Director
9:30 a.m. Botulinum Toxin: Injection Techniques and Toxin Choices
Johan E. S. Samanta, MD
10:00 a.m.
Dry Eyes and Photophobia
Obada Subei, MD
10:30 a.m.
BREAK
10:45 a.m.
Presenters Q&A Panel Session
11:30 a.m.
Oromandibular Dystonia and Meige Syndrome
Virgilio Gerald H. Evidente, MD
Noon - 1p.m. COMPLIMENTARY LUNCH 1:00 p.m.
Deep Brain Stimulation Surgery for Blepharospasm: What Do We Know?
Francisco Ponce, MD
1:30 p.m.
Exploring Alternative Management for Blepharospasm Indu Subramanian, MD and Related Conditions
2:15 p.m.
Presenters Q&A Panel Session
3:00 p.m.
BREAK
3:15 p.m.
Breakout sessions for Patient meetings
4:30 p.m.
Symposium ends 9
BEBRF 2021 SYMPOSIUM FIRST QUESTION AND ANSWER SESSION MODERATOR: DR. JURIJ BILYK | PANEL: DR. APRIL LAO, DR. ALISON WATSON REPORTED BY PETER BAKALOR
Q: Do you change your injection pattern for Apraxia of Eyelid opening? A: Dr. Watson: It depends on if there is an accompanying spasm. I usually start out with my standard treatment pattern then modify based on the patient’s feedback. Q: How long does it take for Lidocaine gel to work? A: Dr. Watson: It has to be on there for 15 to 30 minutes to work. I generally don’t use it with my patients because of concern that it might impact efficacy. Comment by Dr. Bilyk: When I prescribe it, I have it put on when the patient arrives, or even at home before hand, as it takes a while to become effective. Q: If concerned about zinc levels, is it OK to just take a multi-vitamin? A: Dr. Watson: Certainly, taking a multivitamin with zinc in it is more than enough. If your botulinum toxin is not working you might want to investigate with your doctor, especially if they think there might be absorption issues limiting the efficacy of the multivitamin. Q: Please talk more about Brimonidine A: Dr. Watson: Brimonidine is a drug that’s used for glaucoma. It uses a different path to target the Mueller muscle in a way that stimulates it to raise the eyelid a little. It’s a different muscle than the one impacted by botulinum toxin. Comment by Dr. Bilyk: It doesn’t work for everyone, but it’s covered by insurance as a glaucoma medicine. Q: Where could I get ptosis crutches put on my glasses? A: Dr. Bilyk: Ptosis crutches are made by adding a wire to the back of the glasses above the lens, so that when you put them on, the wire pushes against the skin of the eyelid and raises it. Use is for Apraxia and other paralytic situations. There aren’t too many places that make it. It is difficult to fit and you can’t send away for it. Also, it creates a static situation, whereas the lid is dynamic and goes up and down. With the crutch, the lid stays up and dries out the eye, and requires frequent drops 10
If your botulinum toxin is not working you might want to investigate with your doctor, especially if they think there might be absorption issues limiting the efficacy of the multivitamin. to deal with that. I use them infrequently, and they are not a panacea. The best place to find them is to look for a University Ophthalmology department that has an optical shop, and they may be able to help. Q: Other than for insurance reasons, is there any reason to use Dysport over other botulinum toxins? A: Dr. Watson: Generally, it might be used if Botox or Xeomin are not working well for the patient. Anecdotally I believe it disperses more which can be advantageous but does create the worry of it spreading to unintended areas. I haven’t seen that in my patients, but other than just trying to find something that works well I don’t use it. Comment by Dr. Bilyk: It is a very good drug, and it works well, so if you are on Dysport and it is working, stay on Dysport. It is as effective as the other two approved medications – it is just that it is tricky getting the equivalent dose right if one is switching. Q: What oral medications are available for Meige? A: Dr. Lao: There are anticholinergic medications that are usually used more by Neurologists for movement disorders and issues of that nature, so better to refer that to them. Comment by Dr. Bilyk: I don’t think anyone on the panel prescribes them because there are side effects, and you really need someone that is more familiar with them to prescribe them, and that’s usually a Neurologist. Q: For injections, please clarify what you mean by volume and what you mean by dose, and generally who reconstitutes and mixes the toxin?
A: Dr. Bilyk: Volume is the amount of stuff you are injecting that is already constituted. For example: 0.1cc, 1.0 cc and so on. Dose is how much of the botulinum toxin is in the reconstituted mix, i.e. the concentration. We try to maximize the amount of toxin in the minimum amount of volume. I can put 5 units into 0.1cc or I can put 5 units into 0.5cc. The more volume, the more the likelihood of spread, the more it might diffuse, which can be good or bad. The rule is, put as much of the toxin into the smallest volume you can, which controls how much it disperses. Q: For the longer lasting botulinum toxin discussed earlier, how long until it is approved or not? A: Not known by the panel. Q: For medication for Meige, do you recommend it as needed or daily? A: Dr. Bilyk: It is really, really variable – some patients can handle side effects, others cannot. Generally these are not as needed medications, as some of them take time to build up to a stable level, which does not fit with using them as needed. Q: When is it OK to rub eyes after injections? I hear contradictory reports. A: No knowledge of need to restrain rubbing. Q: Regarding pretarsal injections: do you always
The rule is, put as much of the toxin into the smallest volume you can, which controls how much it disperses. limit injections sites to the two, medial and lateral? Do you feel that injection in the middle of the pretarsal area increases the risk of ptosis, if you stay close to the lash line? A: Dr. Watson: I do inject medial and lateral, and I do think that injecting in the middle increases the risk of ptosis, though if lower it might be less so. Comment by Dr. Bilyk: I never inject in the center, always medial and lateral. Even with medial and lateral you can still get ptosis. Q: Do botulinum toxin injections become ineffective after a while? A: Dr. Watson: There used to be more of a risk of antibodies up until the mid-1990s, but we don’t worry about it quite as much now. Q: Can Botox and Clonazepam cause a runny nose? A: Dr. Bilyk: I don’t think so. Even with injections near the nose for Meige, I’ve never heard anyone report that as a consequence.
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BEBRF 2021 SYMPOSIUM SECOND QUESTION AND ANSWER SESSION
DR. JURIJ BILYK, DR. ALISON WATSON, DR. ADITYA KANESA-THASAN, DR. ANN MURCHISON
REPORTED BY BARBARA KIMMEL
Q: Who mixes the botox?
You know somebody’s done a lot
A: Dr. Bilyk stressed the importance of having a welltrained technician mix the botulinum toxin since things can go wrong with each of the many steps. If his office’s one dedicated technician is away, Dr. Bilyk mixes it himself. Steps/variables include what preservative is mixed in, drawing out the correct amount, and using a fresh needle (he doesn’t inject with the needle used to draw the botulinum toxin because this original needle will be dulled and a sharp needle will hurt less). Q: What type and dose of Omega 3 is recommended? A: Dr. Kanesa-Thasan said the data on supplements is mixed. He doesn’t recommend specific supplements to his patients since he hasn’t seen much success with Omega 3 (or other supplements including flaxseed) among his patients. He leaves it up to patients to see what supplements work for them. If a patient decides to take Omega 3, he often suggests PRN Pharmaceuticals which is specifically targeted for dry eye (he couldn’t recall the dosing off hand). He recommends a healthy diet including fatty fish. Q: What’s the difference between blepharoplasty and myectomy? A: “Gigantic.” Myectomy is a long, meticulous, risky procedure involving removing the entire orbicularis, stripping all muscles from the brow to the lower lid. Blepharoplasty removes only a small strip of orbicularis – and in some blepharoplasty, no muscle is removed. Blepharoplasty doesn’t give the functional effect of myectomy. (Note: Dr. Bilyk has seen multiple new patients who misthought they had a myectomy but had had blepharoplasty.) In her two years at Wills Eye, Dr. Watson said she
of myectomies when they try to talk patients out of it. It’s not a bad procedure, but you must be careful to pick the right patient. If you do, the success rate is better. has been able to talk all of her patients who were considering myectomy out of it. Dr. Bilyk: “You know somebody’s done a lot of myectomies when they try to talk patients out of it. It’s not a bad procedure, but you must be careful to pick the right patient. If you do, the success rate is better.” Q: Why is photophobia such a big problem for blepharospasm patients? A: It’s not known why. It could have something to do with your central nervous system or a feedback loop from the brain. Treating the dry eye component sometimes helps with the photophobia. Also, blocking some spectrums may help. Q: Does the body produce enzymes that detoxify botox? Can that contribute to decreased efficacy over time? A: They are not aware of enzymes that break down the botulinum toxin protein. Decreased efficacy is more likely an antibody issue. Dr. Bilyk said decreased efficacy could be from botulinum toxin being given too frequently.
BEBRF WOULD LIKE TO THANK
Nancy Fowler FOR REMEMBERING US IN HER WILL.
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SUPPORT GROUP MEETINGS To get your support group meeting in the next issue of the newsletter, please notify the Foundation office, before July 1, 2022, the next newsletter deadline. If you are interested in attending an online meeting but are not currently in a location with a support group leader, please contact us, and we will try to find you a meeting.
CENTRAL DISTRICT West Dallas/Fort Worth, Texas Date: Wednesday, April 27, 2022 Time: 1pm – 2pm Location: Zoom Please contact Sharon for invitation instructions to meeting. Contact Person: Sharon West Phone: 817-297*4389 Email: swest124@swbell.net Houston, Austin, Round Rock, San Antonio, TX Date: Friday, June 10, 2022 Time: 11am – 12:30pm Location: Zoom (Please contact Carlas for invitation instructions to meeting.) Contact Person: Carlas Powell Phone: 409-363-2206 Email: carlas.powell@gmail.com Dallas/Fort Worth, Texas Date: Monday, June 20, 2022 Time: 12pm – 2pm Location: Zoom (Please contact Ena for invitation instructions to meeting.) Contact Person: Ena Wilmot Phone: 817-488-0445 Email: enamwa@hotmail.com Dallas/Fort Worth, Texas Date: Tuesday, August 16-17, 2022 Time: 8am – 5pm Location: Dr. Brook’s Office 9800 Baptist Health Dr Little Rock, AR 72205 Contact Person: Ena Wilmot Phone: 817-488-0445 Email: enamwa@hotmail.com Dallas/Fort Worth, Texas Date: Tuesday, October 18, 2022 Time: 12pm – 2pm Location: Zoom Please contact Ena for invitation instructions to meeting. Contact Person: Ena Wilmot Phone: 817-488-0445 Email: enamwa@hotmail.com
Houston, Austin, Round Rock, San Antonio, TX Date: Friday, October 28, 2022 Time: 11am – 12:30pm Location: Zoom (Please contact Carlas for invitation instructions to meeting.) Contact Person: Carlas Powell Phone: 409-363-2206 Email: carlas.powell@gmail.com West Dallas/Fort Worth, Texas Date: Wednesday, November 16, 2022 Time: 1pm – 3pm Location: Zoom Please contact Sharon for invitation instructions to meeting. Contact Person: Sharon West Phone: 817-297-4389 Email: swest124@swbell.net WESTERN DISTRICT Greater L.A., California Date: Thursday, April 28, 2022 Time: 6:30pm – 8:30pm Location: Zoom (Please contact Cynthia for invitation instructions to meeting.) Contact Person: Cynthia Clark Phone: 650-678-4132 Email: clark.cyl@gmail.com Greater L.A., California Date: Saturday, May 21, 2022 Time: 9:30am – 11:30am Location: Euro Cafe 546 E. Baseline Rd Claremont, CA 91711 Contact Person: Cynthia Clark Phone: 650-678-4132 Email: clark.cyl@gmail.com CONTINUED ON NEXT PAGE 13
Greater L.A., California Date: Thursday, June 16, 2022 Time: 6:30pm – 8:30pm Location: Zoom (Please contact Cynthia for invitation instructions to meeting.) Contact Person: Cynthia Clark Phone: 650-678-4132 Email: clark.cyl@gmail.com Western District Date: Thursday, June 16, 2022 Time: 4:00 pm – 6:00 pm PDT Location: Euro Cafe 546 E. Baseline Rd Claremont, CA 91711 Contact Person: Cynthia Clark Phone: 650-678-4132 Email: clark.cyl@gmail.com Western District Date: 4:00 pm – 6:00 pm PDT Time: 10am – 12pm Location: Zoom (Please contact Cynthia for invitation instructions to meeting.) Contact Person: Cynthia Clark Phone: 650-678-4132 Email: clark.cyl@gmail.com NATIONAL SUPPORT National Zoom SGM Date: Thursday, April 14, 2022 Time: 1pm – 3pm, Central Time Location: Zoom (Please contact Charlene for invitation instructions to meeting.) Contact Person: Charlene Hudgins
Phone: 409-832-0788 Email: Charlene@blepharospasm.org National ZOOM SGM Date: Friday, May 20, 2022 Time: 1pm – 3pm, Central Time Location: Zoom Please contact Charlene for invitation instructions to meeting. Contact Person: Charlene Hudgins Phone: 409-832-0788 Email: Charlene@blepharospasm.org National ZOOM SGM Date: Wednesday, June 22, 2022 Time: 1pm – 3pm, Central Time Location: Zoom Please contact Charlene for invitation instructions to meeting. Contact Person: Charlene Hudgins Phone: 409-832-0788 Email: Charlene@blepharospasm.org National ZOOM SGM Date: Monday, July 18, 2022 Time: 1pm – 3pm, Central Time Location: Zoom Please contact Charlene for invitation instructions to meeting. Contact Person: Charlene Hudgins Phone: 409-832-0788 Email: Charlene@blepharospasm.org
IF YOU ARE INTERESTED IN LEARNING MORE ABOUT STARTING A SUPPORT GROUP, CONTACT THE BEBRF OFFICE AT 4098320788.
Record or Not Record? The BEBRF staff is frequently asked about whether webinars or Zoom support group meetings are recorded for later viewing. Here are the two very different answers and reasons: Webinars are a part of the educational programming of BEBRF, and as such are ALWAYS recorded and shared on our website for future educational benefits to patients who may not be able to attend the live webinar. The advantage of attending the ‘live’ webinar is that you have dedicated a set-aside time to invest in learning this material, and you also have 14
the opportunity to ask the presenter a direct question, which obviously you can’t do with a recording. Zoom support group meetings, by contrast, are a part of the support programming of BEBRF and are NEVER recorded. While educational ideas may be exchanged, those ideas stem from the sharing of ideas, treatments, and lives that patients have with each other, and that sharing is encouraged by having a safe, private environment to express problems, concerns, and questions.
01/21/22 NATIONAL SUPPORT GROU
P MEETING
DALLAS/FORT WORTH SUPPORT GROUP MEETING
04/14/22 NATIONAL SUPPOR T GROU
P MEETING
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It is our editorial policy to report on developments regarding BEB/Meige and related disorders, but we do not endorse any of the drugs or Ittreatments is our editorial to report developments regarding BEB/Meige and related but domentioned. not endorse any of the drugs or treatin thepolicy Newsletter. Weon urge you to consult with your own physician about disorders the procedures ments in the Newsletter. We urge you to consult with your own physician about the procedures mentioned.
bENIGN ESSENTIAL bLEPHAROSPASM RESEARCH FOuNDATION, INC. P.O. BOX 12468 BEAUMONT, TEXAS 77726-2468 409-832-0788 l Enclosed
Dated Materia
BEBRF has new and fun merchandise! There are four different long and short-sleeved t-shirts in multiple colors, three different mugs, and a tote bag in several colors. If there is something you would like to see, suggest a design idea. A percentage of every sale goes directly to BEBRF. You can view all of them through a link on the BEBRF Website, Facebook page, or by going directly to the site at www.bonfire.com/store/ bebrf - Please take a look…
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