“I Can’t Hold My Head Up!”: A Conversation About Craniocervical Instability
If you find that you can’t keep your head upright, you may have Craniocervical Instability, or Dropped Head Syndrome. There are many things that can cause the problem and you may have other symptoms caused by or related to this condition. Learn from Dr. Malini Narayanan, Chair of the Department of Surgery at UM Capital Region Medical Center, what causes this condition, how to treat it and much more.
Featured Speakers:
Learn more about Dr. Narayanan.
Fraser C. Henderson, Sr, MD, a physician at University of Maryland Capital Region Medical Center, is an experienced physician and former Navy Commander. He served as the Director of Spine at the National Naval Medical Center in Bethesda, Maryland, and has held positions of leadership at several other institutions. Dr. Henderson’s passion is treating Chiari Malformation and Ehlers Danlos Syndrome, particularly the development of the understanding and treatment of deformity-induced injury to the brainstem and spinal cord in these disorders. The inventor of 13 patents relating to disorders of the brainstem and spinal cord, Dr. Henderson has published over 100 peer reviewed articles and book chapters, and given over 190 invited lectures with a focus on craniocervical disorders, genetic disorders, cancer, radiosurgery and unusual problems of the spine.
Malini Narayanan, MD | Fraser Henderson, Sr, MD
Malini Narayanan, MSEE, MD, is Chairman of the Department of Surgery at UM Capital Region Medical Center. She is also the Global Committee Chair for the Women's Leadership in Surgery Society and is part of the Metropolitan Neurosurgery Group in Silver Spring, MD. Dr. Narayanan is a Board-Certified, Harvard-trained Brain Surgeon and Spine Surgeon. She also has a Master of Science in Electrical Engineering from the Massachusetts Institute of Technology (MIT). Dr. Narayanan has won numerous Top Surgeon and Patient’s Choice awards, as well as earned many awards for research. She has been published or has presented on topics such as Pediatric Neurology, Basic Science, Minimally Invasive Spine Techniques and General Neurosurgery. Her mission statement is “Patient first through dedication to the practice and advancement of neurosurgery.”Learn more about Dr. Narayanan.
Fraser C. Henderson, Sr, MD, a physician at University of Maryland Capital Region Medical Center, is an experienced physician and former Navy Commander. He served as the Director of Spine at the National Naval Medical Center in Bethesda, Maryland, and has held positions of leadership at several other institutions. Dr. Henderson’s passion is treating Chiari Malformation and Ehlers Danlos Syndrome, particularly the development of the understanding and treatment of deformity-induced injury to the brainstem and spinal cord in these disorders. The inventor of 13 patents relating to disorders of the brainstem and spinal cord, Dr. Henderson has published over 100 peer reviewed articles and book chapters, and given over 190 invited lectures with a focus on craniocervical disorders, genetic disorders, cancer, radiosurgery and unusual problems of the spine.
Transcription:
“I Can’t Hold My Head Up!”: A Conversation About Craniocervical Instability
Caitlin Whyte: Welcome to Live Greater, a health and wellness podcast brought to you by the University of Maryland Medical System. We put knowledge and care within reach, so you have everything you need to live your life to the fullest.
If you find that you can't keep your head upright, you may have craniocervical instability or dropped head syndrome. There are many things that can cause this problem, and you may have had other symptoms caused by it or related to this condition. So today, we are diving into craniocervical instability and how to treat it with our experts, Dr. Malini Narayanan, the Chair of the Department of Surgery at UM Capital Region Medical Center and Dr. Fraser Henderson, Sr., a physician at UM Capital Region Medical Center. Now Dr. Narayanan, I'll start with you. What is craniocervical instability exactly in layman's terms?
Malini Narayanan, MD: It's too much movement of the head with respect to the neck that can cause a constellation of symptoms and signs.
Caitlin Whyte: And Dr. Henderson, are there any other symptoms besides not being able to hold your head up like vertigo or extra pain?
Fraser Henderson, Sr, MD: Right. There's relatively severe headache, often neck pain, nausea, vertigo; sometimes tinnitus, ringing in the ears; unsteadiness, imbalance, weakness, and decreased sensation. There might also be sleep apnea and extreme fatigue.
Caitlin Whyte: So Dr. Narayanan, I mean, what causes this condition? Is it trauma, other diseases? What are we looking at?
Malini Narayanan, MD: Yeah. I mean, in instances, you know, working at a major trauma center in the state of Maryland, we can see it with fractures and the ligament incompetence from the head to the neck from an acute trauma like a car accident, a fall, et cetera. But there's another large subset of patients who have ligament incompetency, the ligaments that connect the head to the neck are not working well sometimes and oftentimes due to a connective tissue disorder.
Caitlin Whyte: Okay. So Dr. Henderson, if it's not trauma, what age does this condition start to show up? Are there any signs we can look out for or ways we can prevent it from happening if we are one of those, you know, ligament people?
Fraser Henderson, Sr, MD: It often may show up usually in the very early teen years, but the patients don't really recognize it as such. They just put up with the headache and the nausea and they assume that it's normal. It's usually not until the late adolescence and early adulthood that these things are generally diagnosed. So the early signs are headache and nausea. Maybe a child that is very athletic and bright, but then very often for social occasions, they'll retire early or go to their room because they're having a bad headache or nausea.
And there may be a decreased sense of visual periphery so that some of these patients tend to walk into people or doorframes or furniture. They're just not seeing the periphery well, and there may be periods of blackout, you know, feeling of all the way from severe dizziness to presyncope where if they don't immediately sit down, they'll fall down or they blackout, faint, that's called syncope. So we see many patients with syncope or presyncope, and that's an indicator of incompetence of the ligaments that hold the cranium to the spine.
Caitlin Whyte: Oh, wow. Okay. Well, Dr. Narayanan, if this can come up as kind of, you know, nausea, headache, and kind of get pushed aside by patients, how is it diagnosed?
Malini Narayanan, MD: Yeah. Oftentimes patients may go to several doctors and specialists, both in the field of neurology and neurosurgery. It can often be the whole syndrome or symptomatology, can start with a simple sporting accident or, you know, high-impact sports, ballet, dancing, and they smolder along. Oftentimes by the time we see the patient, they've been living with this condition for several years.
Caitlin Whyte: Got you. Wow. Well, let's look towards the future and some positives. Dr. Henderson, what are the treatment options available? I'm sure it could be case dependent, but how do you treat something like this?
Fraser Henderson, Sr, MD: First thing is to diagnose the problem and to recognize that there may be an underlying connective tissue disorder, such as Ehlers-Danlos syndrome or a hypermobility spectrum disorder. And these are not rare. We know many, many people, you know, in our own social circles with these issues. Second thing, restrict activity. Third thing, strengthening of the neck and maintenance of good posture. For more severe cases, they'll need a neck brace, physical therapy. And for the most severe cases, they'll need a fusion from the cranium to the upper spine.
Caitlin Whyte: And as we wrap up here, Dr. Narayanan, can something like this be cured? Or if not, how can someone with craniocervical instability live their best life?
Malini Narayanan, MD: Those are excellent questions. It's a dilemma that one lives with, but we can optimize their functionality. Many of these patients are very high functioning, as I said before. Superb athletes, excellent at school, proficient and talented in ballet. And the question is how do we get a larger fraction of their life back from full disability? I think the key is earlier diagnosis. So when they have self-insight, then they can take the precautions of perhaps not engaging in activities with as much neck movement. And if not, later diagnosis then placing in a collar that we see oftentimes immediate improvement in their functionality and that crosses over to a fusion.
Caitlin Whyte: Well, wrapping up here, Dr. Narayanan, is there anything else you'd like to add, let patients know about this condition?
Malini Narayanan, MD: We are engaged at Metropolitan Neurosurgery Group under the leadership of Dr. Henderson and many other experts in this area into research and clinical research to really drill down, you know, the criteria and how we can make this condition better. Scientific research is also ongoing.
Caitlin Whyte: And same question to you, Dr. Henderson. Any final thoughts?
Fraser Henderson, Sr, MD: These connective tissue disorders are far more common than we ever realized. I went through my first 20 years of neurosurgery never making a single diagnosis of a connective tissue disorder or maybe an occasional Marfan syndrome, osteogenesis imperfecta. But the Ehlers-Danlos syndrome are an invisible disorder and they're all around us. And these patients suffer greatly. They go to many, many doctors who take one look at the patient, the patient has the appearance of good health, but they're suffering a great deal. And so there has to be greater awareness of EDS. And we're fortunate to have people like Miss America this year and last year, who has a Ehlers-Danlos syndrome, and so the disorder is becoming more well-known.
Caitlin Whyte: Well, we hope this podcast can be just another part of that awareness. Doctors, thank you so much for taking time out of your busy schedules to join us today and share this great information. This episode is sponsored by the University of Maryland Spine Network.
Connected by the renowned University of Maryland School of Medicine, the UM Spine Network is home to the state's leading spine experts. With convenient locations throughout the state, UM Spine Network Physicians collaborate to create comprehensive care plans for patients across the full spectrum of care. When you work with a UM Spine Network physician, you can expect to receive the high quality evidence-based care that you deserve.
Find more shows just like this one at umms.org/podcast. Thank you for listening to Live Greater, a health and wellness podcast brought to you by the University of Maryland Medical System. We look forward to you joining us again.
“I Can’t Hold My Head Up!”: A Conversation About Craniocervical Instability
Caitlin Whyte: Welcome to Live Greater, a health and wellness podcast brought to you by the University of Maryland Medical System. We put knowledge and care within reach, so you have everything you need to live your life to the fullest.
If you find that you can't keep your head upright, you may have craniocervical instability or dropped head syndrome. There are many things that can cause this problem, and you may have had other symptoms caused by it or related to this condition. So today, we are diving into craniocervical instability and how to treat it with our experts, Dr. Malini Narayanan, the Chair of the Department of Surgery at UM Capital Region Medical Center and Dr. Fraser Henderson, Sr., a physician at UM Capital Region Medical Center. Now Dr. Narayanan, I'll start with you. What is craniocervical instability exactly in layman's terms?
Malini Narayanan, MD: It's too much movement of the head with respect to the neck that can cause a constellation of symptoms and signs.
Caitlin Whyte: And Dr. Henderson, are there any other symptoms besides not being able to hold your head up like vertigo or extra pain?
Fraser Henderson, Sr, MD: Right. There's relatively severe headache, often neck pain, nausea, vertigo; sometimes tinnitus, ringing in the ears; unsteadiness, imbalance, weakness, and decreased sensation. There might also be sleep apnea and extreme fatigue.
Caitlin Whyte: So Dr. Narayanan, I mean, what causes this condition? Is it trauma, other diseases? What are we looking at?
Malini Narayanan, MD: Yeah. I mean, in instances, you know, working at a major trauma center in the state of Maryland, we can see it with fractures and the ligament incompetence from the head to the neck from an acute trauma like a car accident, a fall, et cetera. But there's another large subset of patients who have ligament incompetency, the ligaments that connect the head to the neck are not working well sometimes and oftentimes due to a connective tissue disorder.
Caitlin Whyte: Okay. So Dr. Henderson, if it's not trauma, what age does this condition start to show up? Are there any signs we can look out for or ways we can prevent it from happening if we are one of those, you know, ligament people?
Fraser Henderson, Sr, MD: It often may show up usually in the very early teen years, but the patients don't really recognize it as such. They just put up with the headache and the nausea and they assume that it's normal. It's usually not until the late adolescence and early adulthood that these things are generally diagnosed. So the early signs are headache and nausea. Maybe a child that is very athletic and bright, but then very often for social occasions, they'll retire early or go to their room because they're having a bad headache or nausea.
And there may be a decreased sense of visual periphery so that some of these patients tend to walk into people or doorframes or furniture. They're just not seeing the periphery well, and there may be periods of blackout, you know, feeling of all the way from severe dizziness to presyncope where if they don't immediately sit down, they'll fall down or they blackout, faint, that's called syncope. So we see many patients with syncope or presyncope, and that's an indicator of incompetence of the ligaments that hold the cranium to the spine.
Caitlin Whyte: Oh, wow. Okay. Well, Dr. Narayanan, if this can come up as kind of, you know, nausea, headache, and kind of get pushed aside by patients, how is it diagnosed?
Malini Narayanan, MD: Yeah. Oftentimes patients may go to several doctors and specialists, both in the field of neurology and neurosurgery. It can often be the whole syndrome or symptomatology, can start with a simple sporting accident or, you know, high-impact sports, ballet, dancing, and they smolder along. Oftentimes by the time we see the patient, they've been living with this condition for several years.
Caitlin Whyte: Got you. Wow. Well, let's look towards the future and some positives. Dr. Henderson, what are the treatment options available? I'm sure it could be case dependent, but how do you treat something like this?
Fraser Henderson, Sr, MD: First thing is to diagnose the problem and to recognize that there may be an underlying connective tissue disorder, such as Ehlers-Danlos syndrome or a hypermobility spectrum disorder. And these are not rare. We know many, many people, you know, in our own social circles with these issues. Second thing, restrict activity. Third thing, strengthening of the neck and maintenance of good posture. For more severe cases, they'll need a neck brace, physical therapy. And for the most severe cases, they'll need a fusion from the cranium to the upper spine.
Caitlin Whyte: And as we wrap up here, Dr. Narayanan, can something like this be cured? Or if not, how can someone with craniocervical instability live their best life?
Malini Narayanan, MD: Those are excellent questions. It's a dilemma that one lives with, but we can optimize their functionality. Many of these patients are very high functioning, as I said before. Superb athletes, excellent at school, proficient and talented in ballet. And the question is how do we get a larger fraction of their life back from full disability? I think the key is earlier diagnosis. So when they have self-insight, then they can take the precautions of perhaps not engaging in activities with as much neck movement. And if not, later diagnosis then placing in a collar that we see oftentimes immediate improvement in their functionality and that crosses over to a fusion.
Caitlin Whyte: Well, wrapping up here, Dr. Narayanan, is there anything else you'd like to add, let patients know about this condition?
Malini Narayanan, MD: We are engaged at Metropolitan Neurosurgery Group under the leadership of Dr. Henderson and many other experts in this area into research and clinical research to really drill down, you know, the criteria and how we can make this condition better. Scientific research is also ongoing.
Caitlin Whyte: And same question to you, Dr. Henderson. Any final thoughts?
Fraser Henderson, Sr, MD: These connective tissue disorders are far more common than we ever realized. I went through my first 20 years of neurosurgery never making a single diagnosis of a connective tissue disorder or maybe an occasional Marfan syndrome, osteogenesis imperfecta. But the Ehlers-Danlos syndrome are an invisible disorder and they're all around us. And these patients suffer greatly. They go to many, many doctors who take one look at the patient, the patient has the appearance of good health, but they're suffering a great deal. And so there has to be greater awareness of EDS. And we're fortunate to have people like Miss America this year and last year, who has a Ehlers-Danlos syndrome, and so the disorder is becoming more well-known.
Caitlin Whyte: Well, we hope this podcast can be just another part of that awareness. Doctors, thank you so much for taking time out of your busy schedules to join us today and share this great information. This episode is sponsored by the University of Maryland Spine Network.
Connected by the renowned University of Maryland School of Medicine, the UM Spine Network is home to the state's leading spine experts. With convenient locations throughout the state, UM Spine Network Physicians collaborate to create comprehensive care plans for patients across the full spectrum of care. When you work with a UM Spine Network physician, you can expect to receive the high quality evidence-based care that you deserve.
Find more shows just like this one at umms.org/podcast. Thank you for listening to Live Greater, a health and wellness podcast brought to you by the University of Maryland Medical System. We look forward to you joining us again.