2022 BEBRF SYMPOSIUM Q & A SESSIONS

REPORTED BY PETER BAKALOR

Q & A SESSION 1: DRS. MAHANT, SAMANTA, AND SUBEI

Q: Can you comment on the study that reported on the benefits of coffee in the studied cohort?

A: (Provided after the event by Dr. Mahant) Prior coffee habit was looked at as one variable among several in an Italian multicenter case control study (groups studied: one with blepharospasm compared to control groups of patients with hemifacial spasm, and another group of relatives of patients with blepharospasm). A protective effect was seen, which was proportional to the amount of coffee consumed -- one to two cups per day were needed for protective benefit. Also, the age of onset of the eye spasm was found to be later in patients who drank more coffee: 1.7 years for each additional cup per day. This may indicate a role for adenosine; caffeine blocks adenosine receptors which may play a role in the underlying cause of blepharospasm. Defazio G, Martino D, Abbruzzese G, et al. Influence of coffee drinking and cigarette smoking on the risk of primary late onset blepharospasm: evidence from a multicentre case control studyJournal of Neurology, Neurosurgery & Psychiatry 2007;78:877-879.

Q: Does having a blepharoplasty improve the results of Botox or is having a limited upper lid myectomy a better option? Part 2: I had blepharoplasty, with 100 units Xeomin every eight weeks and my lids are still closing . What else can I do?

A: Dr . Mahant: With blepharoplasty, I’m not sure it has been shown to improve blepharospasm in particular. Blepharoplasty can remove excess skin on the eyelid and if that is getting in the way, that may help with vision. I don’t know that it will help with the results of the injections.

Dr . Samanta: The data for improving blepharospasm specifically is inclusive of a myectomy. Clearly, you would not expect an improvement in blepharospasm just from blepharoplasty. It might help to remove some of the excess weight which might be pushing down on the lids but other than that, no. In regard to the second question, I wouldn’t expect the blepharoplasty to have made a significant change. If it had been a myectomy, then you would be back to trying different toxins and dosages. Otherwise, deep brain stimulation might be considered a possibility and there are other non-western approaches that may help. Also, have you been evaluated for dry eye and has that been dealt with fully?

Dr . Subei: Re blepharoplasty, you have to be careful with that because oftentimes I see patients after blepharoplasty with dry eye. They can do it by putting a little sling in the eye lid and that can result in increased exposure to air. In any case, blepharoplasty can lead to increased exposure of the eye and if you have blepharospasm, an increase in the risk of dry eye is the last thing you want.

Q: Does zinc, when taken five days ahead of injections increase the effect of botulinum toxin and are there any foods with zinc you see helps injections?

A: My experience is that there hasn’t been a clear difference. A couple of studies have been published but they were small, and it’s not entirely clear what the whole mechanism for this would be.

Q: Can you damage your eyes by using outdoor FL 41 lenses indoors? Can you over massage the meibomian glands?

A: Dr . Subei: Typically not. What patients would often do is use regular sunglasses indoors and that could definitely increase the sensitivity of the eye to all wavelengths of light, so that could make the motor photophobia much worse. If you’re not going to wear the FL41 lenses, I would not wear regular sunglasses indoors. To answer the question directly: No. You wouldn’t typically damage your eyes.

In regard to massaging the meibomian gland: as long as you’re not irritating the skin, there is no concern. If that were the case, I would stop. Otherwise, typically warm compresses are helpful as well as massage. Also, there is intense pulse light therapy which was used initially for rosacea. Some studies show that it can help with meibomian gland dysfunction. It stimulates the gland and decreases the inflammation that may be clogging it up or causing it to malfunction.

Q: I have taken Baclofen for blepharospasm and meige for four years with little effect. Is there another Med that you could recommend?

A: Dr . Mahant: first, it’s important that you consult your primary physician about your blepharospasm care, but outside of Baclofen, as we’ve discussed here, there are some other options. For example, benzodiazepines are an option that work a little bit differently by working on a different GABA receptor. Benzodiazapines include Xanax, Valium, Ativan, and others. They can be more effective but there is risk because they are controlled substances, and there are risks of tolerance and dependency, so you have to be very careful with that. I have to say that within my practice, the use of clonazepam (another benzodiazepine), particularly at night, seems to lessen some of the severity on a daily basis that patients experience. My patients have done quite well and not had dependency issues – again, that’s within my patient population, and that doesn’t mean that it’s not a risk. There are other options but keep in mind that as far as benefits are concerned maybe 20 to 25% of the patient population benefit from these medications. You shouldn’t rely on that as your sole source of improvement.

Q: Any progress on long-lasting botulinum toxin?

A: Dr . Samanta: There is a formulation based on type A strain that has concluded its clinical trial and has recently filed with the FDA. Typically getting approvals and the process through the FDA will delay the availability of any drug or therapy by six months or more. Until it’s officially approved it’s just guesswork as to when it might come out. I would hope that it would be available by some time perhaps the middle of next year. The short answer is yes. There is at least one longer acting botulinum toxin that is in development and the approval process. So we hope that we will see something within a year. As far as duration of benefit is concerned: six months has been mentioned but probably between four to five months, so perhaps a five month window is the most likely result. In the real world, that would be a substantial improvement, getting people down to two or maybe three treatments a year whereas within this room now there are probably patients who are getting five or more treatments a year.

Q: Please comment on the eye drop (Upneeq) that temporarily opens eyelids .

A: Dr . Subei: It’s a newer medicine. I haven’t really used it or rather haven’t prescribed it for my patients yet. It sounds promising, but I do have very limited experience with it. In general, with new medications, they have to be on the market for a while before you see accurate results.

Q: For surgery such as myectomy or deep brain stimulation, do you see any difference in coverage for Medicare or Medicare Advantage versus typical workplace insurance?

A: Dr . Samanta: There are as many answers as there are plans, so it’s not an easy question to give a straightforward answer to.

Q: I like bourbon and a good cigar, so the question is how much does the smoke affect my dry eye?

A: Dr . Subei: It depends on the bourbon I guess. Smoking can definitely worsen dry eye. There are not many things that smoking improves beyond perhaps your mood. It’s not that great for your eyes especially if you’re indoors or in an enclosed environment. If you have dry eye, I would say goggle up before you go into the smoke room.

Q: Can you have jaw opening and jaw closing when speaking at the same time?

A: Dr . Evidente: That’s a tough question to answer. The answer is yes, but it is very rare. Dystonia can be at rest or action induced. Action induced is when a certain action is done, the dystonia appears. For jaw opening dystonia, the most common thing you see is jaw opening at rest and yet a very small percentage of my patients with jaw opening dystonia have symptoms when they speak, when they chew, or when they eat. That action now triggers the jaw closing muscle. So opening is at rest; closing is action induced. It’s kind of paradoxical, and the only way to prove that is to do electrophysiology. The last thing you want to do is to inject both muscles at the same time because that would negate the gains from injecting one versus the other because those are opposing muscles. In that case, you have to ask the patient which one is more bothersome - jaw opening or jaw closing? It is really tough to tackle both because if you do both the agonist and antagonistic muscles, the effect will be zero. It’s like patients who haven’t had any injections.

Q: If DBS does not work, is it easily removable and if so, are there any issues left after the removal?

A: Dr . Ponce: Yes, it is reversible. If you turn it off, it’s like it’s not there. I’ve had patients who’ve elected to have the battery, the pacemaker and the wires down the neck removed, but for me not to do anything with their brain, so that’s an option. Then I’ve had people who had an infection. The standard of care for an infection is to remove the entire system. So, once I release the electrodes from the fixation point behind the forehead, it basically just slides right out. So the hardware is out, but there’s still the bur hole. Those kind of heal up overtime, but you still feel a dent and you’d have the scars

(one in each side of the head, one behind the ear and one on the chest). The short answer is: it’s reversible, and they can be removed very safely, and what’s leftover is basically a little dent behind the forehead where the four small bur holes in the skull were.

Q: Have you heard of muscle activation therapy applied to dystonia?

A: Dr . Subramanian: In the paper I referred to, most of those patients had focal dystonias: neck dystonia, torticollis, and some with hand and foot or musicians dystonia. With musicians dystonia, the sense is that people use the body part a lot and really have to be precise. Sometimes the brain is hyperactivated because it is using this area so much, and so sometimes, in these sorts of problems, we’ll send people to physical therapy to retrain the brain in some way. Obviously with the eyes that’s going to be hard. For example, with a violinist and vibrato, if we use that hand in a different way such as training them to read braille, and by doing that, reorient the same body parts in a different way, the brain is remapped. We don’t really understand what causes dystonia, where there is some mismatch between sensory input and motor output. Again, in musicians’ dystonia the movement is very refined, and the question is can we retrain these areas? In response to the question: if you’re working with a physical therapist, the idea is they work with your physician to assess what’s needed and then give it say two weeks where you are not distracted and give it a try. Work with the person, give them feedback and assess with them. There are situations where too much exercise or too much use can actually worsen the movement.

Q: I have jaw clenching and have experienced very dry mouth from injections in the masseters which affected the salivary glands. Temporalis injections are helping . Is there a danger of impacting the salivary glands when injecting the medial pterygoid?

A: Dr . Evidente: Yes. Absolutely. Anytime you do injections around the face or the neck or the jaw, there is potential for dryness of mouth and indirectly, dysphagia which is difficulty swallowing. We try to minimize that in several ways. One is to use the least dose, and the second is to be as precise as possible therefore using EMG; third, use the most concentrated solution. The more you dilute the toxin, the more it spreads to structures that you don’t want to influence. Those are the strategies to reduce the degree of spread of the toxin and minimize the dryness of mouth.

Q: to Dr . Ponce: What’s the oldest person you’ve implanted for DBS?

A: Dr . Ponce: We’ve had patients in their early 90s. Unilateral essential tremor would probably be the condition. It’s a family decision making sure that family members who might advocate for them have a chance to speak up and are part of that decision making process.

Q: Given the success rate of DBS, how long do you need to keep tweaking the Botox before you go for the DBS?

A: Dr . Evidente: I would want to use at least two toxins, for example Botox and Xeomin, first. I would rarely use the only type B toxin, Myobloc, because if injected in the face it really hurts. I rarely use Dysport. I want to try at least two of these toxins and at least two injection cycles each and of course oral medications if possible before I say let’s start talking about deep brain stimulation and things that are more invasive and radical.

Q: If you have DBS, can it help both blepharospasm and cervical dystonia?

A: Dr . Ponce: Yes it can help those segmental dystonias that affect multiple parts of the body.

Q: Can injections at the lash line affect the meibomian glands?

A: Dr . Evidente: The answer is yes, because all the botulinum toxins affect glands, and nerves are also affected not just the muscles. It also affects the autonomic nervous system or the nerves around the muscles so anything that’s driven by autonomic nerves such as the glands will be potentially affected.

Q: What is the relationship between blepharospasm and Parkinson’s?

A: Dr . Evidente: Blepharospasm is more common in patients with Parkinson’s than the normal population. It can sometimes be driven by the medicines for Parkinson’s. I’ve seen patients with blepharospasm as a dyskinesia from levodopa which is the most common drug used for Parkinson’s. What’s even more common in Parkinson’s and Parkinson’s syndrome is apraxia of eyelid opening. That’s very common. The main difference between apraxia of eyelid opening and blepharospasm is a difficulty opening the eyelids. There’s no spasm or forceful closure. It’s like your eyes are just so heavy. We see apraxia more commonly in Parkinson’s than we see blepharospasm. There is no doubt blepharospasm is seen in Parkinson’s patients. Sometimes it responds to levodopa, but also can be worsened by Parkinson’s medicines. The important thing is that if you have blepharospasm or apraxia in the setting of Parkinson’s, DBS will make those symptoms disappear.

Dr . Subramanian: I have seen apraxia of eyelid caused by DBS as a side effect but agree with everything Dr. Evidente said.

Q: If you get DBS can you still get botulinum toxin injections if you still have blepharospasm?

A: Dr . Evidente: It depends on whether the DBS treats the blepharospasm or not. DBS is really effective for these conditions. The tricky thing is the programming. If your blepharospasm doesn’t respond but your Parkinson’s does, that doesn’t mean that programming by another doctor might not be able to solve both. It’s really tricky. When we published the first paper on blepharospasm, one of the things that we wrote is that you really have to stimulate the deepest contact. For instance, the Medtronic lead has four contacts from up to down so from dorsal to ventral. In that paper, we wrote the most effective contacts for blepharospasm were the deepest contacts. Usually when Dr. Ponce targets, it’s the middle contacts as the sweet spot for hand dystonia, whereas for blepharospasm it’s the deepest contact where we usually have better success. The programming can be set to program three contacts or four contacts as needed to ensure the right contacts for each problem are programmed.

Q: What were the names of the two books Dr. Subramanian referenced?

A: Dr. Vivek Murthy’s book is Together, and Noreena Hertz’s book called The Lonely Century. I urge you to read both.

Q: My doctor says I’m not a good candidate for DBS because of fear of seizures. Can you

comment on that?

A: Dr . Ponce: the gatekeeper for DBS is the neurologist, and different neurologists have different ideas and different preferences for treatment. For example, there are neurologists that manage Parkinson’s disease and never incorporate DBS as part of their strategy. They may not have been trained in it in their Fellowship and may not want to deal with the programming. A second opinion is always a very reasonable thing to ask for. I’m more comfortable when the referral comes from a given neurologist than from a generalist. As far as seizures go, the risks from the operation are things like bruising, confusion, or a speech problem that goes away as the swelling goes down. It can manifest in a seizure. I used to see around one a year around five years ago, but don’t see them very often right now. Typically, if a seizure occurs, we would give medication, and if we don’t see another seizure, then the neurologist would stop the seizure medication eventually. Epilepsy is extremely rare - I would go so far as to say it’s not a risk and you’re not going to have permanent seizures. Under the neurologist care, discontinuing any epileptic medication for that seizure should be an inevitability. So a seizure is a risk but it is kind of a recovery event that should be temporary.

PATIENT STORY - JANA FISETTE

REPORTED BY HEIDI COGGESHALL

Jana Fisette has blepharospasm and oromandibular dystonia (“OMD”) but has seen this year significant symptom improvement via her dentist Dr. David Olson in Bridge City, TX. Jana was diagnosed and treated for blepharospasm three years ago. She had difficulty speaking, swallowing and was unable to drive, read, walk by herself, or watch

TV. She was treated by eyelid Frontalis Sling Suspension surgery and received Botox® with intermediate success and a poor prognosis of remission.

Along with blepharospasm symptoms, Jana presented to her dentist with sore back teeth, constant pain in her left ear and multiple headaches. Dr. Olson thought these symptoms were separated from her blepharospasm and successfully treated them with a custom made lower balanced dental occlusal splint (Tanner Splint). More significant to our community, Jana also noted some mild improvement in her dystonia. Could Dr. Olson improve her dystonia further? After consulting with a colleague, Dr. Steven

Broderson, and using his process of treating patients with headache pain by using orthopedic dental appliances along with cranial osteopathic adjustments, Jana’s blepharospasm and OMD symptoms began to subside. These appliances are the May Pivot appliance on the lower jaw (which replaced her Tanner Splint) and a Broderson ALF appliance on the maxilla.

After 3 months of treatment with reports of good and bad days, continued symptom resolution occurred until she could enjoy a normal quality of life. She can now drive, read, talk, and participate in social activities. Is this a cure? No! But there is hope that the dystonia may completely resolve over time. Jana still receives Botox injections for her eyes and this may also be a factor in her symptom reversals. Maybe some reduction in frequency of her Botox injections will be a test of the efficacy of this mechanical way of treatment. Dr. Olson continues her orthopedic therapy and biweekly cranial orthopedic releases as she reports nearly complete remission.

(I, as a fellow BEBRF Meige patient visited Dr. Olson for my OMD and felt an immediate improvement in my speech with my May Pivot device he provided. Because I am not nearby, I do not have his weekly cranial adjustments, which Dr. Olson and Jana believe are critical to her success. I also continue to receive Botox in both my upper and lower face.)

Could other patients be helped? Dr. Olson’s suggestion for potential treatment research would include an academic neuroanatomist PhD, a cranial osteopath DO, a vascular neurologist MD, and a dentist who is experienced in treatment of myofacial pain, orthodontics and gnathologic orthopedics.

From Dr. Olson: “I believe that the switch that activates the neuropathway to dystonia symptoms can be reversed. The question arises as to what it is and where it is. It could be mechanical, biochemical or physiological to a mechanical event. Is it at the nerve source or peripheral? Why is it bilateral?

There is no question that it involves the fifth and seventh cranial nerves, and possibly the tenth as well as it sometimes affects the voice and swallowing. The temporal cranial bone is intimately related to these three cranial nerves as well as the occlusal function of the teeth. This articulation of the Jaw Joint is exposed to multiple different force directions and strengths due to chewing and bruxing.

An injury to the chin directly affects this bone, normal functional chewing affects this bone, and abnormal function of the teeth (Bruxing) also affects this bone. A lifetime of stress and parafunctional occlusion often is related to frequent severe headaches. Cumulative functional trauma to the temporalis bone, its neighbor bones and soft tissue may be a factor in any dystonia, therefore there may be some relief simply by decreasing the Jaw Joint pressure, massaging the cranial sutures and balancing the direction of chewing forces. Hopefully improving the cranial environment by micro adjustments to the sutures of the skull may facilitate fluid movement of blood and cerebral spinal fluid. The goal is a normal balanced organic function of the Jaw-Cranial relationship. It may be that simple.

During Jana’s orthopedic treatment with blepharospasm/miege symptom subsidence and reversal, in order to try to understand the complexity of this disease, I have been studying the dental texts by Dr. Jack Hockel, Dr. Harold Gelb, and Dr. Stephen Broderson, and videos by Brendan Stack. Along with the tempero mandibular joint texts and extensive historical literature review, I have spent significant time studying cranial osteopathic texts by Dr. McGown, Dr. Sutherland, Dr. Upledger, and the Upledger cranial sacral therapy study guide.

Integrating the information with neuro-anatomy texts and Cunningham’s Manuel of head, neck, and brain dissection is overwhelming. So when I asked Dr. Brendan Stack (who was very successful treating dystonia symptoms using orthopedic dental appliances). “What is happening?” His answer was “I don’t know but it works.” Parallels of the peripheral nervous systems and their cross communication should be investigated as there being demonstrated by sensory tricks used to offset dystonia symptoms.”

PLEASE REMEMBER BEBRF IN YOUR WILL

BEBRF would like to publicly thank, recognize, and acknowledge our generous donors from 2022. We have tried to contact all donors for permission to list their names, but unless a donor responded with that permission by the beginning of 2023, other donors are listed anonymously. Whether you are listed by name or not, we most sincerely thank you for your generosity.

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