El director executiu, Shiv Gaglani, i el productor executiu, Michael Carrese presenten Raise the line, un podcast que explora formes d’enfortir el nostre sistema d’atenció mèdica amb líders en medicina, tecnologia, educació i govern.
Durant aquest any 2023 el podcast està dedicat a conscienciar sobre les malalties minoritàries i és per aquest motiu que han convidat al Dr. Royo en qualitat de Director de l’Institut Chiari, Escoliosis i Siringomièlia de Barcelona i president de la Chiari & Scoliosis & Syringomyelia Foundation, per tal de presentar les malalties neurològiques que investiga des de fa 50 anys- la siringomièlia idiopàtica, l’escoliosi idiopàtica i la Síndrome d’Arnold Chiari I- i els seus descobriments sobre la Malaltia del Filum.
“A Pull From Below On the Whole Central Nervous System”- Dr. Miguel Bautista Royo-Salvador, Director of the Institut Chiari & Syringomyelia Escoliosis de Barcelona
As our Year of the Zebra focus on rare diseases continues, we’re putting several neurological conditions in the spotlight whose symptoms include neck pain, vertigo, swallowing issues, memory trouble and many more: idiopathic syringomyelia; idiopathic scoliosis; and the Arnold-Chiari Syndrome type 1 caused variously by cavities in the spinal cord and brain herniation. Fortunately, our guide is one of the world’s leading experts in this area, Dr. Miguel Bautista Royo-Salvador, Director of the Institut Chiari & Siringomyelia & Escoliosis de Barcelona, and President of the Chiari and Scoliosis and Syringomyelia Foundation. In his fifty-plus years of focus on these conditions, Dr. Royo-Salvador has alternated between research activity and clinical practice in which he applies a treatment method he developed called the Filum System. Inventing this new approach was sparked by a patient who experienced very little improvement from what was the standard surgical treatment at the time. “I have come to the conclusion that an abnormally intense caudal traction of the entire central nervous system is the cause of the descent of the cerebellar herniation in Chiari Syndrome type 1, as well as of scoliosis and syringomyelia and others. To speak figuratively, it’s like a pull from below on the whole central nervous system,” he explains to host Michael Carrese. After 2,100 procedures with a subjective improvement rate of 95%, Dr. Royo-Salvador and the Institute are working to broaden awareness of this minimally invasive approach. Tune-in for an educational journey into these rare conditions and a proven technique to relieve patient suffering.
Transcript of Interview between Michael Carrese and Dr. Miguel Bautista Royo-Salvador
Hi everybody, I’m Michael Carrese. Today I’m happy to welcome Dr. Miguel Bautista Royo-Salvador to Raise the Line, who has focused his career on a series of rare neurological diseases, including idiopathic syringomyelia, idiopathic scoliosis and the Arnold-Chiari Syndrome type 1.
In his capacity as Director of the Institute Chiari & Siringomielia & Escoliosis de Barcelona, and President of the Chiari & Scoliosis & Syringomyelia Foundation, Dr. Royo-Salvador alternates between research activity and clinical practice where he applies a treatment method that he developed called the Filum System.
Dr. Royo-Salvador earned a degree in medicine and surgery from the University of Barcelona’s School of Medicine, where he completed his specialization in neurosurgery and neurology, and was later awarded a PhD from the Autonomous University of Barcelona. I’m looking forward to learning about his research and its potential impact on patients affected by these rare diseases.
Thank you so much for being with us today, Dr. Royo-Salvador.
Dr. Miguel Bautista Royo-Salvador: Thank you.
Michael: I’d like to start with learning more about you, and what interested you in medicine and why you decided to specialize in neurology and neurosurgery?
Dr. Royo-Salvador: (replies in Spanish)
Translator (Katharina Kuhn): I chose to study medicine because I wanted to understand people better, understand how we work, how to improve their quality of life. I decided to specialize in neurology and neurosurgery because I wanted to study the most extraordinary organ in the cosmos, the human brain, and thus understand why human beings are intelligent.
Michael: As I mentioned, you have deep expertise in idiopathic syringomyelia, and Arnold-Chiari type 1 Syndrome. Can you describe those to our audience and tell us what sparked your interest in those particularly?
Dr. Royo-Salvador: (replies in Spanish)
Translator: The Arnold-Chiari Syndrome type 1 consists of the herniation of the cerebellar tonsils and of the lower part of the cerebellum through the foramen magnum into the spinal canal. Symptoms associated with this disease can be very varied and include headaches, neck pain, limp weakness and limp pain, impaired vision, paresthesias, altered sensation, vertigo, swallowing issues, back pain, memory trouble and many, many more.
Idiopathic syringomyelia is characterized by the appearance of cavities inside the spinal cord. This condition is accompanied by symptoms of generalized degeneration of the spinal cord, often related to temperature sensitivity. These are labeled rare diseases and patients often find that it’s quite difficult to get the right diagnosis because, for example, finding a small cavity inside the spinal cord, a radiologist may say it’s an incidental finding that cannot be related to this very wide range of symptoms the patient is experiencing.
The same goes for the Chiari malformation where there is discussion about how much, how far the cerebellar tonsils have to have herniated in order to classify as a Chiari malformation. Somebody who has a herniation that is not more than five millimeters, but still has all the symptoms, may not get a diagnosis of Chiari and with that, has no chance of a treatment. These are conditions that are neurologically complicated for the patients.
My personal interest in these conditions was first sparked from the complaint of a patient who confessed to me that she had not improved at all after successful surgery for the Chiari malformation, which was performed by me many years ago with the traditional technique, which is decompression surgery — a suboccipital craniectomy.
So, after this patient told me that there had been no improvement, I started to reexamine the conventional theory that the small posterior fossa is the cause of this descent of the lower part of the cerebellum through the foramen magnum because there was no improvement after enlarging this fossa. In my now fifty-years of research, with a doctoral thesis and a number of publications on the subject, I have come to the conclusion that an abnormally intense caudal traction of the entire central nervous system is the cause of the descent of the cerebellar tonsils and Chiari Syndrome type 1, as well as of scoliosis and syringomyelia and others. To speak figuratively, it’s like a pull from below on the whole central nervous system.
Michael: Fifty-three years…that’s an amazing amount of time to focus on this. In terms of the treatment, what’s being proposed to deal with these conditions?
Dr. Royo-Salvador: (replies in Spanish)
Translator: Standard treatments currently work by enlarging the posterior fossa of the skull, making more room for the cerebellum and the cerebellar tonsils — which is called a decompression surgery for Arnold-Chiari malformation or syndrome type 1 — or by shunting the cerebral spinal fluid circulation when it is considered that that is the cause of the problem.
Decompression surgery has frequent severe neurological complications. Shunting the syringomyelia cavities inside the spinal cord directly can have up to 40% of complications. Other types of CSF shunts, for example, DVP shunts, can have a complication rate of up to 20%. These treatments, although they may be palliative, do not eliminate the root cause of the conditions themselves.
In Filum disease, we use a minimally invasive technique to section the filum terminale ligament. This filum terminale ligament joins the end of the spinal cord to the end of the spine, the coccyx. That means that the conflict has stopped and that the organism has an opportunity to repair the already existing injuries as far as possible. With this kind of technique, we have now had no serious or relevant complications in more than 2,100 patients with a subjective improvement rate of 95% and even improvement in all cases when we look at it from an objective view if the clinician examines the patient. This is the minimally invasive technique that is being proposed currently here at the institute.
Michael: That’s amazing. If I could ask a little additional question there, is this technique being adopted in other countries, has it spread?
Dr. Royo-Salvador: (replies in Spanish)
Translator: The surgical technique is being applied really only here at the institute. But there are other doctors that have picked up on it and that are kind of imitating the technique around different parts of the world, mainly in Asia, also in Europe. In the United States, there was also a surgeon at the Chiari Institute in New York who kind of assumed that there is this caudal traction responsible, but applied a different technique which is not so minimally invasive, but is applied intraduraly and has more complications.
Michael: In addition to this surgical technique that you’ve developed, you have been doing research for many decades, as you mentioned. What other contributions to the field based on your work do you think are most significant?
Dr. Royo-Salvador: (replies in Spanish)
Translator: The most relevant or significant is to have been able to give an explanation to several diseases that were considered to not have a known cause, by means of scientific work and research with the doctoral thesis that undermines all these findings. Having discovered this pathological mechanism that, apart from the diseases that we are discussing today, will also give further clarification to other conditions, and also defining a new syndrome — the Neuro-Cranio-Vertebral syndrome and its congenital form, the Filum disease — and describing a surgical treatment that eliminates the cause and does so without any complications or major risks for the patients…I feel that’s also been significant in this area.
Michael: Surely. Dr. Royo-Salvador, Osmosis is an educational company, and we love to have our guests identify for us something that they wish more people knew — something that they consider to be a gap in knowledge — and would ask Osmosis to teach a course about it or make a video about it. What would that be?
Dr. Royo-Salvador: (replies in Spanish)
Translator: I would very much like to take this opportunity to thank you for this initiative that you have taken to ask me about my research we’ve been conducting more or less in solitary for, well, quite a large number of years. This helps us reach an audience and disseminates the results of our research that we’ve been working on, which is one of the main goals that our foundation — the Chiari Scoliosis and Syringomyelia Foundation –has as well. Thank you very much for inviting us today, and for taking an interest in rare diseases.
Yes, on this point, we think that an educational video on the conflict between the central nervous system and the craniovertebral system, which is responsible for Filum disease and Neuro-Cranio-Vertebral syndrome, would be very interesting indeed for students and anybody who’s interested, because this is a conflict that is present in all mammals. Even though it doesn’t find an expression as a disease in all cases, it is something that is there. When it’s very intense, it translates into a condition.
We think that it’s really important that medical students who are future family doctors and specialists become familiar with the concept in order to recognize diagnostic clues in their patients and help them find the right path to find a solution for their condition. At present, unfortunately, we find that many patients have very long histories of medical visits, of tests, of progression of their symptoms before they find the right diagnosis. An early intervention and early recognizing of what’s going on could spare them a lot of their suffering.
Michael: That’s actually a real focus of ours…to try to raise awareness about rare diseases so that that diagnostic journey for patients can be much shorter than it is today. That’s right in line with what we’re interested in.
Just to wrap up, we always like to ask our guests to provide advice to medical students and people who are early in their medical careers. What are some of the key pieces of wisdom you have to share with that audience?
Dr. Royo-Salvador: (replies in Spanish)
Translator: I would like to advise medical students that they should direct their interests and their studies towards what they are passionate about. They have to understand that what will be the reward in this profession is what they achieve in the fields of knowledge, human knowledge, social assistance and research.
They should, from the beginning, know that economical and financial aspects should not play any role in their decision to go into medicine. We should all keep in mind that the medical profession is the most beautiful, the most scientific and the most humane of all professions.
Michael: Well, that’s beautiful. That’s wonderful advice. We’ll have to end it on that note. But we want to thank you very much, Dr. Royo-Salvador, for being with us today, and we wish you the best of luck in your very important work at the Institute.
Dr. Royo-Salvador: Thank you, sir.
Michael: I’m Michael Carrese, thanks for checking out today’s show and remember to do your part to raise the line and strengthen the healthcare system. We’re all in this together.
