Nurse Maureen‘s Health Show
Welcome to Nurse Maureen's Health Show Podcast where we dive deep into all things health, sex, menopause, relationships, parenting, communication and more! Hosted by a passionate nurse with years of frontline experience, we bring you expert interviews, real-life stories, and the latest insights on staying healthy aging. Nothing is off limits as we delve into overall health, sexual health, mental health, and sexual health. Whether we’re breaking down medical myths, discussing cutting-edge treatments, or chatting with top health professionals, this show is your go-to for practical advice and inspiring conversations.
Nurse Maureen‘s Health Show
Cervical Dystonia: Insights from neurologist Dr. Davide Martino
Curious about the hidden complexities of dystonia and its impact on health? Join me for an enlightening conversation with Dr. Davide Martino, neurologist and director of the Movement Disorders Program in Calgary, Alberta, as we unravel the intricacies of this often misunderstood neurological condition. We'll explore the different forms of dystonia, especially cervical dystonia, which affects the neck and head. Through our discussion, you'll gain valuable insights into the causes, manifestations, and challenges of dystonia, a condition that touches the lives of approximately 50,000 Canadians.
Discover the multifaceted ways to manage cervical dystonia, from botulinum toxin (Botox) injections and deep brain stimulation to physiotherapy and oral medications. Dr. Martino shares his expertise on the clinical diagnosis process, the psychological and social hurdles faced by patients, and the promising treatment strategies available. Whether you're a healthcare professional, someone affected by dystonia, or simply eager to learn more, this episode offers a comprehensive look at the current state of knowledge and treatment options for cervical dystonia, aiming to raise awareness and understanding of this challenging condition.
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Speaker 1:Good evening and welcome to another episode of Nurse Maureen's Health Show Podcast. Thank you so much for tuning in. I'm a registered nurse, nurse, continence advisor and sexual health educator, along with host of this podcast, really appreciate all of your follows and downloads and I love it when you text the show, so feel free to text the show, or you can email me in confidence, nursetalkathotmailcom. We talk about a variety of different health subjects on the program, and so I'd love to hear your feedback. Or if there's something that you would like to hear as well, you can always go to my website, maureenmcgrathcom, or, as I said, email me nursetalkathotmailcom. I'm also on social media, so feel free to follow if you feel like following me. Anyway, looking forward to hearing from you. I am very excited about this particular subject because I know a little bit about it, but not all that much, and I am surprised at how many Canadians this particular condition affects.
Speaker 1:Dystonia is a neurological condition that affects how your brain controls muscles throughout your body. According to leading experts, exactly how and why people develop it is still a mystery and the condition is often misdiagnosed. One of the more challenging forms of this condition is cervical dystonia, which specifically affects the head and neck. It can be debilitating and life-altering for people. It is estimated, as I said, that 50,000 people in Canada are impacted by dystonia, and yet most people know little about it. Joining me today is Dr Davide Martino, neurologist and the director of the Movement Disorders Program in Calgary, alberta. Good evening, dr Martino. Welcome to the podcast.
Speaker 2:Good evening, Maureen. Thank you for having me.
Speaker 1:Oh, it's my pleasure. Thank you so much for joining me and for the education we're going to provide to the listeners about this. I have so many questions, but let's start at the beginning. What is dystonia?
Speaker 2:Yes, dystonia is certainly one of the most common movement disorders in humans and we can define it as a series of involuntary muscle contractions that become sustained and lead to the acquisition of abnormal postures or involuntary movements and sometimes tremor, which can really affect pretty much most parts of the body body and the earlier they start. Typically this we see typically in situations caused by brain injuries, such as injuries affecting the brain that occurred around birth, and certainly cerebral palsy belongs to one of these common causes. But there can be also genetic forms of dystonia, where dystonia is the primary presentation that can also start early in life and typically these forms start and manifest in a very widespread version across the body involving trunk and limbs version across the body involving trunk and limbs. But when dystonia begins later in life in adults it may affect typically one or two or three body sites only and, as you mentioned earlier, the neck, like in cervical dystonia, is the most common of these adult onset forms.
Speaker 1:Now getting back to dystonia. I would imagine that would impact as well every aspect of your life.
Speaker 2:having these sustained muscle movements of your entire body, it would be very difficult to live with, I would imagine is a motor control problem, so inevitably, and also depending on which body size is affected but let's focus a bit on cervical dystonia it does have an impact on routine activities and, as you can imagine, if the head is turning or tilting in one particular direction or is shaking, then holding a conversation becomes difficult.
Speaker 2:Sometimes patients have to position themselves in a specific position in order to maintain a conversation. Driving can be a problem. Sometimes, to some extent, even walking may be more problematic in a situation like this. But, as you can also imagine, it is a visible condition, and so there may be some stigma attached to it, either perceived by the individual or, in a way, expressed by people around them. This may impact on social proficiency, may lead to social anxiety, to lowered mood, and another important point is that these sustained muscle contractions can be painful, and so pain is another important aspect of the condition that may have a significant impact on quality of life and functioning in general, in particular in cervical dystonia.
Speaker 1:And so basically, cervical dystonia affects the head and neck and causes spasms and it causes spasms.
Speaker 2:It does present in the form of abnormal posturing of the head, which is typically turned or tilted to the side, or shifted forward or backwards, and oftentimes you can see the head shaking as the individual is moving it from side to side.
Speaker 1:So you've mentioned a number of the symptoms that are common to cervical dystonia. How is it?
Speaker 2:diagnosed? Yes, the diagnosis at the moment remains essentially clinical. So we observe, through inspection, the patient and we can diagnose it. So it is by examination, by physical examination. There aren't specific markers that we can test for to confirm or disconfirm a diagnosis of cervical dystonia and, for example, imaging does not help. Mri or CT of the head or neck do not help, because there is no obvious structural change in the individual's brain that can pinpoint the presence of dystonia and likewise there is no blood work or other types of tests, such as, for example, collecting cerebrospinal fluid as we sometimes do in neurology, that can help diagnose cervical dystonia. In most cases the diagnosis is made through examination by a neurologist.
Speaker 1:And it's just incredible. And about what age does this come on, and can it be confused with other conditions, or what are the differential diagnoses, like arthritis, that type of thing?
Speaker 2:Yes, for sure, Cervical dystonia typically begins in the 30s this is the most common age of onset is in the early mid-30s and sometimes early 40s. It can also happen earlier or later, but in most cases this is when it starts. And, yes, it can be confused with the muscle strain. It can be confused with a problem related to the joints of the cervical spine. So osteoarthritis, as you mentioned, and often is diminished or is really overlooked by, sometimes by primary health professionals or by patients themselves who can't really understand what's going on. Yet they feel that their neck is in pain or that it's starting to shake and they attribute that to poor sleep or inappropriate physical exercise. So it can be confused with other things. But honestly, to us neurologists there are very few things that can present like cervical dystonia. So to a trained eye, the diagnosis becomes usually quite straightforward, and so in a situation like this, it is always a good idea to discuss as soon as possible with a primary care physician and ideally also seek a referral to a neurologist?
Speaker 1:Absolutely. I understand that researchers are not exactly clear on the specific cause or causes of cervical dystonia. Why is that?
Speaker 2:Well, first of all because it's a disorder of the central nervous system of the brain and we cannot test the brain with the same still we can't, even in this day and age, in the same level of depth that we can study other organs.
Speaker 2:And also, as I mentioned earlier, there are no macroscopic changes in the structure of the brain that we can identify with a simple brain scan. The problem of dystonia is that it is a software problem rather than a hardware problem, to put it in terms. So it has to do more with the connectivity of brain networks and how they function, and probably this even begins early in life, in development, only to manifest a bit later in life. It has to do with the plasticity mechanisms that control these motor networks. We can study plasticity in the lab, for sure, and also non-invasively. But given the variability of these plasticity tests that we have in the lab that involve, for example, sophisticated equipment like TMS, transcranial magnetic stimulation, for example, there's a lot of variability across the general population in these plasticity measures, and so it's quite it has become really difficult for us to identify a test that separates people with dystonia from those without dystonia.
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Speaker 1:Ladies, do you leak with cough, sneeze and or exercise? Did you know that leaking urine is never normal? Hi, it's Maureen McGrath, registered nurse and nurse continence advisor. It's time to stop letting bladder leaks hold you back, and time to say goodbye to bladder leaks and hello to Moxie Patch, a revolutionary new device to treat stress urinary incontinence. Moxie Patch is ultra discreet, effective, reusable and eco-friendly, empowering you to live life to the fullest, free from the worries and limitations of stress urinary incontinence. With Moxie Patch, you can choose freedom from the hassle of bulky pads and embrace life again. Stop letting bladder leaks hold you back. Say goodbye to embarrassing moments and hello to unstoppable confidence with Moxie Patch. For more information or to order your Moxie Patch, go to MoxiePatchcom today and discover a new level of confidence. Moxiepatchcom, because you deserve to feel confident. Moxie Patch is also available at select retailers and on Amazoncom. Now. Are there any known risk factors for cervical dystonia?
Speaker 2:There aren't risk factors that we can definitively link to the cause of dystonia. For example, there isn't such a relationship between a risk factor like smoking and lung cancer, for example. But there are some environmental factors that can predispose. There is some evidence that repeated trauma to the cervical spine and to the neck may be associated with a higher risk of developing cervical dystonia. But the evidence is not very strong and, as you can imagine, it's not coming from populations of thousands of patients.
Speaker 2:Usually these studies are relatively small, they involve just a few hundreds and sometimes when we in epidemiology, when we have to study risk factors, we can't really conclude definitively. We can draw firm conclusions from studies that do not involve thousands of patients in most cases. So I would say repetitive trauma affecting head and neck may be considered a predisposing risk factor and we also documented a few years ago a potential protective effect of coffee drinking. But again, we don't understand the mechanism of that. We have some speculations about it. So I wouldn't say that there are clearly established risk or protective factors for cervical dystonia at the moment.
Speaker 1:Might concussion, repeated concussion, be a risk factor.
Speaker 2:Well, as I mentioned, the evidence is soft. There is some literature on that, but I typically don't mention this to my patients Because the number of patients who have repeated injuries of this kind who do not develop dystonia so high that it is really difficult to create that alarm.
Speaker 1:Very interesting. Now you mentioned that it's pretty easy for a neurologist with a trained eye to diagnose this. How are people with cervical dystonia treated Well?
Speaker 2:Well, we would like to get to the bottom of the problem and find a cure for cervical dystonia and other forms of dystonia, but obviously, as I mentioned, not understanding fully all the mechanisms that lead to dystonia, this becomes really difficult. So we have different approaches and, as always in medicine, we start from medications. And as always in medicine, we start from medications. But experience has taught us, and research too, that the most effective medication to help these muscle contractions and the pain that results from them in cervical dystonia is botulinum toxin, and injections of botulinum toxin in the neck muscles are, by and large, the most effective treatment.
Speaker 2:We do sometimes use oral medications, but they need to be taken more times a day, every day, and they don't have the same efficacy of botulinum toxin and have more side effects than botulinum toxin. For people who do not respond to botulinum toxin or have developed some form of resistance to it over the years because botulinum toxin needs to be repeated in cycles pretty much quarterly, because it loses effect over a period of three months For these people we need neuromodulation, which, in the case of cervical dystonia, is essentially deep brain stimulation, functional surgery, so implanting an electrode system in the brain to reset the networks that are dysfunctional in this condition and that can be also a life changer for patients. It is, of course, more invasive than getting injections every three months, but certainly can be a solution of, or at least can significantly improve quality of life and functioning for many of these patients who unfortunately can't continue doing botulinum toxin because they're not responding to it anymore. Physiotherapy yeah.
Speaker 1:Is that more longstanding the procedure? Does that last longer than the botulinum toxin or the Botox?
Speaker 2:Botulinum toxin has, as far as we know, does not have a long-term response. So if we stop delivering it every three months, the effect will simply go. So it needs to be repeated about three, four times a year. Deep brain stimulation equates to a system like a pacemaker for the heart, so it does reset the circuitry involved in dystonia, in dystonia, and we can adjust the parameters, the stimulation settings, with a remote. We can change amplitude, we can change other parameters to optimize the treatment. So it's a flexible treatment and it does work pretty much for a long period of time and people have to live with this system, obviously, but the impact that it may have can be so beneficial that it's certainly worth the while.
Speaker 1:And that involves implanting electrodes within areas of the brain where the electrodes produce electrical impulses that affect that brain activity. And is that basically how that deep brain stimulation works?
Speaker 2:Yes, and you may also be surprised that we don't fully understand how deep brain stimulation works either, but it does work, and we think it has to do with resetting the pattern of firing of brain cells in the target areas that we are stimulating and, as a result, of the whole network that these target areas are attached or connected to. So we are really resetting a full network by doing this. And the area of the brain that we target is called the basal ganglia. They are deep structures of gray matter in the brain that represent a bit of the headquarters of motor and behavioral, for that matter, selection, and so it's a sophisticated technique, the technology that it's actually improving day by day, because we have now the opportunity to steer electric current across the target areas in the way that we desire and to minimize also potential side effects that this stimulation can cause. So it has become more and more intelligent as an approach.
Speaker 1:Wow, and that's amazing you started to mention as well physiotherapy. Yes, is that another modality?
Speaker 2:Physiotherapy is. We would all hope that it could be another reliable and replicable modality to treat dystonia in general, but unfortunately it does lack strong evidence. There are a number of protocols that have been developed around the world, which have always been found to be difficult to replicate from one center to the other, and so widespread dissemination of established protocols of physical therapy is not really happening, not to mention coverage, because of this lack of evidence. We can say that botulinum toxin and deep brain stimulation. They are supported by good evidence and as a result of that they are approved treatments that can be reimbursed by our health systems, but this doesn't apply to physical therapy, and many physiotherapists in the community do not want to engage with patients with cervical dystonia simply because there is no established protocol that can help them.
Speaker 1:Right. Very interesting. How do cervical dystonia patients or people with cervical dystonia manage the condition on their own? What do they turn to?
Speaker 2:Well, they have always taught me resilience for sure. Their way to cope with the daily functioning is crucial and it's highly personal. It is very important to learn how to manage stress and acquire techniques that help stress management. These are not a cure, but they certainly help contain the impact that dystonia may have on their life, also because stress does make these contractions worse to some extent, so it is important to become proficient in controlling it. Light physical exercise is not therapeutic, but is nevertheless helpful, and I wouldn't say that a patient with dystonia should not exercise In fact it should but avoiding strenuous exercise if possible. But light exercise is certainly. Light and consistent exercise can be very beneficial. And generally, advocacy and getting as much education from health professional and support groups is really crucial in helping acceptance and minimizing stigma, and it's exactly what you're doing, maureen. I mean, it's really about letting people know about it. That is going to improve, ultimately, quality of life of patients who suffer from this condition.
Speaker 1:Yeah, and I would imagine people with cervical dystonia and other dystonias suffer and that that would you know, potentially lead to depression and anxiety because it could impact their relationships and their jobs. I mean, it would just be terrible and I really appreciate all the work that you've been doing. You've been treating cervical dystonia for years. What are you most hopeful about in terms of disease diagnosis or care?
Speaker 2:Well, I think that there are several aspects that I'm hopeful for. I would like to see an increased access and capacity for botulinum toxin clinic to see as many patients as possible and potentially treat them a bit more often as well, according to their needs. There is definitely huge potential in the field of neuromodulation. The road is still long, but we are making progress and it's becoming more and more effective and better tolerated. And, as you mentioned, not neglecting non-motor aspects like, in particular, psychiatric aspects like depression, anxiety, pain, sleep disruption, by screening them. Being aware of these non-motor issues is very important, because a study has clearly showed that depression and anxiety are the most significant predictor of quality of life of patients living with dystonia, even more than the severity of their motor features, and so we definitely must not neglect these aspects, and we are starting not to do it anymore and we are being more and more proactive as health professionals on this front too.
Speaker 1:That is awesome. Where can listeners go for more information and support about living with cervical dystonia?
Speaker 2:Well, we do have a national patient advocacy association, the Estonia Medical Research Foundation of Canada, which I would strongly advise people to refer to and visit their website, and additional resources are available at destoniacanadaorg. Sources are available at dystoniacanadaorg. You can find there a lot of information about the natural history of this condition, the impact that it has and also on potential health professionals who can help across our large country.
Speaker 1:Wonderful. Dr Martino, thank you so much for joining the podcast this evening. I really appreciate all of the information.
Speaker 2:Thank you very much for having me, Maureen. I really appreciate your attention to this topic. Thank you.
Speaker 1:You are very welcome. Sounds like there is a lot of hope between botulinum toxin and deep brain stimulation, and if you would like to learn more about cervical dystonia, or if you're affected by cervical dystonia, please go to're affected by cervical dystonia. Please go to dystoniacanadaorg and also please share this episode with people that you know are suffering or might be suffering with cervical dystonia. Thank you so much for tuning in. You can always email me, nursetalkathotmailcom, or you can go to my website, maureenmcgrathcom. I really appreciate all of your downloads and follows and, once again, feel free to share this episode or any of the other episodes with people that you might know who could benefit from this information. I am Maureen McGrath, registered nurse, Nurse, Continence Advisor, and my guest was Dr Davide Martino, neurologist and director of the Movement Disorders Program in Calgary, Alberta, Canada. Thanks so much. Have a wonderful evening. Thanks so much for tuning in. I'm Maureen McGrath and you have been listening to the Sunday Night Health Show podcast. If you want to hear this podcast or any other segment again, feel free to go to iTunes, Spotify or Google Play or wherever you listen to your favorite podcasts. You can always email me, nursetalkathotmailcom, or text the show 604-765-9287. That's 604-765-9287, or head on over to my website for more information. Maureenmcgrathcom, it's been my pleasure to spend this time with you.
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