Questions regarding care


Legal note

The FAQ (frequently asked questions) section is the result of a compilation of the most significant questions according to their importance or frequency with which they are asked. The administrative staff has been compiling these questions since the beginnings of the Institut Chiari & Siringomielia & Escoliosis de Barcelona’s activity.

The medical team has prepared the answers under Dr Miguel Bautista Royo Salvador’s supervision to every single question.

The aim of this section is no other than to orientate, help and to solve the most common doubts that may arise when patients facing one of the diseases we treat. In no way does this section replace a medical specialist’s professional advise who sees the patient personally.

By accepting this legal note you acknowledge that the mentioned herein is for informative purposes only. Do not take any decision without having consulted with specialist physician beforehand.

We hope that this section will be useful to you.

Signed: Dr Miguel Bautista Royo Salvador.

Director of the Institut Chiari & Siringomielia & Escoliosis de Barcelona.


1.1. REGARDING THE DIAGNOSIS

  • Can you confirm an Arnold Chiari I / Idiopathic Syringomyelia / Idiopathic Scoliosis diagnosis?

In order to confirm one or several of these diagnoses, you should pass and send in the following complimentary tests:

MRI of the cranio-cervical region

Thoracic spine MRI

Lumbosacral spine MRI (if possible in supine and prone position)

Scoliogram x-ray of the entire spine on one film, profile and front view

Once you have the information, you can send it in along with the corresponding reports through our Website, following the instructions on the site itself. We will provide our specialists’ orientation at distance regarding your case, and we will let you know if they indicate and appointment for a diagnostic conclusion.

 

  • I have Arnold Chiari I – why do I have to get MRIs of the thoracic and lumbar spine and a scoliogram? 

Because, according to our studies, this condition tends to be associated to other diseases of the spinal cord, and in order to confirm a diagnosis, our specialists also require those test results.

  • I would like to know if an Arnold Chiari I Syndrome can be operated on in an initial phase / I am being told that the descent of my cerebellar tonsils is not a Arnold Chiari I Syndrome, because it is of few millimetres, and that it does not need to be operated. Do you agree with this indication?

As soon as a descent of the cerebellar tonsils is detected, even if it is mild, our specialists study the complementary magnetic resonance scans, and/or others, in order to confirm whether this is due, or not, to a mechanical traction and identify the cause that brings it about.

If the existence of a mechanical traction of the spinal cord is confirmed, and the cause is an excessively tight filum terminale (Filum Disease), the SFT procedure is indicated as soon as possible in order to eliminate the traction that is traumatizing the spinal cord.

  • What is the meaning of “idiopathic”?

(From Greek idios, one’s own, and pathos, suffering). “Disease existing on its own, that is independent from any other morbid state”.

The term points to a primary pathology, with no other known cause. Until now, non-secondary Syringomyelia, not a consequence of a trauma or tumour, was considered to be primary or of unknown cause; the same occurred with Scoliosis, in case of not being traumatic, nor tumorous, nor congenital, nor degenerative, nor of neuro-muscular origin.

With his theory, Dr Royo Salvador has introduced an explanation for both pathologies’ origin, the anomalous traction of the filum terminale (a shared ethiopathogenetic cause).

  • I have hydrocephalus and Arnold Chiari I Syndrome – can I travel by airplane? Will the hydrocephalus be treated? 

The possibility to travel by plane with this diagnosis depends on each patient’s clinical condition. Speak with your general practitioner before taking this decision.

Our neurosurgical service is also concerned with diagnosing and treating hydrocephalus, even though we do not offer any exclusive or different solution for this than other neurosurgical services.

Now, if the patient is not from Barcelona, for the hydrocephalus therapy, we advise to approach a medical centre in your home territory as the indicated ventriculo-peritoneal shunt surgery involves the need for a follow up of the post-operative course, and it would not be adequate to do this at distance

  • What is the “Filum Disease” or the “ Neuro-Cranio-Vertebral Syndrome”? 

“Filum Disease” or “Neuro-Cranio-Vertebral Syndrome” is the definition that we use to describe all the clinical expressions that are involved when it comes to an anomalous traction of the spinal cord, caused by an excessively tense filum terminale. Such clinical manifestations may correspond to an Arnold Chiari I Syndrome, idiopathic Syringomyelia, and idiopathic Scoliosis and other diseases.

 

  • I do not have many symptoms, but it has been discovered that I have Syringomyelia. Do I need to have surgery?

We frequently observe that the severity of the syringomyelia cavities at the anatomical level does not always correspond in proportion to the symptomatological expressions of the disease.

In any case, according to the concept that the Filum Disease is the cause of Syringomyelia, once it has been detected that the spinal cord is tight and subject to an anomalous traction, it is recommendable to apply the Sectioning of the Filum terminale as soon as possible in order to free the spinal cord and to immediately stop the necrotic process of the tissues involved in the formation of the cavity/ies.

  • My scoliosis is of more than 40-50º – will its development be stopped with the surgery?

With more than 40º of idiopathic scoliosis, the curvature of the spine does not depend only on the action exerted by a tight Filum terminale, but also on the force of gravity.

It is possible that with the application of the SFT the evolution of the curvature will be stopped, but it is also possible that it keeps on deteriorating, yet in a slower manner than without treatment.

In these cases, our medical team will assess the most adequate post-operative indications for each patient: rehabilitation, physiotherapy and/or corset.

 

  • As my scoliosis is of more than 50º, orthopaedists and traumatologists have told me that I will have to get my spine fixed. Why and when (before or after) would I have to undergo the Sectioning of the Filum terminale surgery?

Our medical team approaches idiopathic scoliosis from a neurologic and neurosurgical perspective. With idiopathic scoliosis, the spinal cord suffers, because it is tense and tight within the spinal canal. The spinal cord tension is eliminated with the SFT and the force that creates the curvatures, emanating from the filum terminale, disappears.

This action is fundamental in any case; if possible, it is preferable to apply the SFT treatment before the fixation, in order to avoid the risk of paraplegia that the latter procedure entails as the traction of the spinal cord increases as it is straightened.

If, on the other hand, the patient has already had the fixation procedure it is equally convenient to have the SFT. It will alleviate the traction of the spinal cord originating from the filum terminale with the additional value of straightening the vertebral canal.

  • If I have Scoliosis, why do I need to get a magnetic resonance scan?

Our Institut is a neurosurgical one; it assesses and treats Scoliosis from the perspective of the spinal cord within the scoliotic spine. We need magnetic resonance studies in order to examine the state of the spinal cord within the vertebras. The scoliogram (whole spine x-ray) merely allows examining the bony part of the vertebral column.

1.2. TREATMENT

 

  • How is the Sectioning of the Filum Terminale surgery performed with your technique?

With the minimally invasive Filum System® SFT technique, the ligament is sectioned in the sacrum area, without touching the bone or having to open the medullary membranes. The size of the surgical wound is of few centimetres and it does not have external stitches. In adults, always given that there are no contraindications, local anaesthesia with sedation is applied.

  • Where is the scar going to be? Will it be very visible?

It will be on the coccxys, in the sacrum area, at the end of the vertebral column and at the beginning of the intergluteal cleft; it will hardly be visible or even, with time, it will not be noticeable anymore.

  • What risks and complications can this surgery involve?

The only risks or complications of the SFT as performed by our medical team can be a hematoma or an infection of the surgical wound, if the post-operative guidelines are not followed. These guidelines involve amongst others: to put no physical strain the surgery area and to not wet the wound during ten days after the surgery.

Like all surgical procedures, also the SFT can be subject to circumstances that are external to the surgical technique itself, like those in relation to the process of anaesthesia or other external factors.

  • Won’t my spinal cord be moving around on the inside after cutting the filum?

The sectioning of the filum terminale ligament involves the elimination of the anomalous traction that acts on the patient’s spinal cord and nervous system. Once the surgery is performed, the nervous system is liberated, but no tissue changes its position.

Only in some cases we detect that the conus medullaris and the descended cerebellar tonsils, over time and very slowly (normally years after the surgery), may rise by some millimetres.

 

  • Why don’t the doctors in my country/in the public hospitals perform this procedure? Or if they do, it is for different cases, and they tell me that for the conditions in question it will not work?

Our Institut is based on Dr. Royo Salvador’s innovative theory according to which the Arnold Chiari I Syndrome, Syringomyelia and idiopathic Scoliosis have the same cause: the anomalous traction of the spinal cord vehiculated by the filum terminale. Our specialists understand that by sectioning this ligament, the traction is eliminated.

Conventionally, other theories and other causes are considered for these diagnoses. Different treatments are applied; whilst the Sectioning of the filum terminale (even though with a lumbar laminectomy) is applied in cases of Tethered Cord diagnoses. This explains why many physicians still do not apply our method and are therefore not aware of the benefits of its applications.

 

  • The specialists that I have seen until now have recommended to do magnetic resonance check ups periodically and to have surgery (cranial decompression) only if the symptoms become worse. Why do your neurosurgeons indicate the application of the Sectioning of the Filum Terminale treatment as soon as possible? 

Any recommendation regarding the moment of when to apply a surgery depends on the risk-benefit relationship of the pathology and the procedure.

The SFT according to the Filum System® has the great advantage of stopping the disease’s development whilst implying a minimal risk (it is applied with local anaesthesia and sedation / the only complication that has been detected so far is the possibility of an infection of the wound). Hence, the medical assessment may vary with respect to other surgical treatments that are indicated for these diagnoses.

With this treatment concept, the disease’s cause is eliminated and further damage to the nervous system can be prevented, for this reason, once it has been indicated, it is important to go ahead with the minimally invasive surgery as soon as possible.

 

  • There is a doctor in my country that says that he/she is doing the same as Dr. Royo, can I trust him/her?

Our method, the Filum System®, is unique and for the moment there are no other medical centres or neurosurgeons in the world able to perform its Sectioning of the Filum Terminale surgery.

The Filum Academy Barcelona® is a dependency of the “Chiari & Scoliosis & Syringomyelia Foundation” and has the mission to train other neurosurgeons, medical teams and neurosurgical institutes at the levels Filum System® Sanitary and Filum System®Surgery.

Up to date, there are only accreditations at the level Filum System® Sanitary. They include training for diagnosing, management and following up patients affected by a condition that bears the anomalous tension of the filum terminale as a cause.

Currently, the Sectioning of the Filum terminale surgery according to the Filum System® method can only be performed at the Institut Chiari & Siringomielia & Escoliosis de Barcelona (which we refer to as ICSEB).

To find out who are the accredited specialists and centres worldwide, please visit the section “Medical Partnerships” on the ICSEB Website.

  • Why does the ® symbol appear next to the Filum System® method?

In order to be able to guarantee that the discoveries and breakthroughs of the theory defended by Dr. Royo Salvador will be communicated safely, we use one of the best international systems to prove that everything protected by the “registered trademark” is 100% accurate, with regards to the content and the guidelines that the trademark owner has registered.

When a new method emerges, the appearance of imitators who do not respect the most basic principles of intellectual and industrial property can easily occur. This can entail a corresponding loss of prestige for the product and, what is worse in these cases, a resulting danger for the patients as the method is not applied correctly taking into account everything contained in this registered trademark, which is much more than just the surgical technique.

 

  • The filum terminale does have a function, right? Nothing will happen to me if they cut it?

The filum terminale ligament has a function in the embryonic phase of development, but not after, therefore its sectioning in childhood, adolescence or adult age is irrelevant and does not have any negative consequence.

  • Does the age at which the patient undergoes the surgery affect the Sectioning of the Filum Terminale treatment according to your Filum System®?

The disease does not have a preferential character concerning age, its development appears in a unique and individual way in each patient. In a sample of 800 cases, we have observed patients in infantile age with a very affected spinal cord, as well as others in adult age without a lot of affectation, and vice versa. What has been detected as influential in the outcomes of the surgery is the evolution of the lesions of the nervous system, not the patients’ developmental age.

It is due to this general characteristic of randomness in the expression of the Filum Disease (with Arnold Chiari Syndrome I, idiopathic syringomyelia, idiopathic Scoliosis) that once the surgery indication has been issued, it is suggested to go ahead with the treatment as soon as possible in order to stop the evolution of the lesions.

  • At what age to you start to operate? Have there been children that have undergone the Sectioning of the Filum Terminale?

We know from experience that the Sectioning of the filum terminale should be applied as soon as possible in order to stop the evolution of the disease; therefore it is convenient to schedule the surgery as soon as the cord traction condition is discovered, without any contraindications from early childhood.

Out of a sample of 800 cases operated by means of the Sectioning of the Filum terminale with the minimally invasive technique at our Institut, 5.71% are children of less than 12 years.

Currently, the youngest patient to undergo surgery with our team was eleven months old at the moment of the treatment.

With children we usually apply general anaesthesia; the judgment for this will however always be provided by the anaesthesiologist responsible for this part.

  • Have there been teenagers to undergo surgery with your technique?

Out of a sample of 800 cases operated at our Institut by means of the minimally invasive Sectioning of the Filum Terminale technique, 6.86% are teenagers between the ages of twelve and sixteen (both included). Usually, general anaesthesia is applied. Generally in medicine, patients older than sixteen years are considered to be in the band of adult patients, if there are no contraindications, local anaesthesia with sedation is administered. Nevertheless, this evaluation will always be made following the criteria and guidelines of the anaesthesiologist.

  • Have there been elderly patients to undergo the Sectioning of the Filum Terminale? Up to what age do you operate?

Out of a sample of 800 cases operated in our Institut by means of the minimally invasive Sectioning of the Filum Terminale technique, 5% of patients are older than sixty-five years.

Our centre’s philosophy consists of helping patients by applying surgical treatments provided that the surgery’s benefits will improve the patients’ quality of life, even if it were to be only for a few years.

The most senior patient to undergo the SFT surgery with our team was 86 years old at the moment of the procedure.

  • Is it an inconvenience if the surgery date falls within the menstrual period?

No, the point of the patients’ menstrual cycle does not suppose any inconvenience.

  • Can the filum get caught again?

A possibility of “retethering”, or the adhesion of the end of the cut filum terminale to its surroundings, after the SFT, exists. It has been documented with extensive bibliography that with the internal SFT there are retethering rates ranging from 1 to 55%, according to the authors (Stone and Rozzelle 2010, Cochrane et al 1998).

As to the SFT technique as applied by our team, with he sectioning of the filum terminale at its coccyx insertion, there is no bibliography regarding the topic. In our experience of more than one thousand cases with this technique we are aware of “one” case of clinical retethering, meaning, with re-appearance of symptoms or signs of the disease that the patient underwent surgery for.

1.3. OUTCOMES

  • In case of the Arnold Chiari I Syndrome, can the descended cerebellar tonsils ascend with the SFT?

In the majority of cases operated at our centre, the descent of the tonsils at the level of the foramen magnum and/or the brain stem does not vary upon sectioning the filum, what does disappear immediately when performing surgery, is the pressure on the nervous tissue within the foramen magnum caused by the cord traction as well as the risks of cardiorespiratory dysfunctions involved with the affectation of the area where the cardiorespiratory nervous centres are located.

At any rate, in some cases, some two/three years after the surgery, we have observed that the cerebellar tonsils ascend by a few millimetres; sometimes they even reposition themselves completely.

 

  • Will the symptoms disappear after sectioning the filum?

The aim of the application of the Sectioning of the Filum Terminale is to stop the evolution of the Cord Traction Syndrome. The lesions that the nervous system has suffered as a consequence of the disease may be reversible or irreversible. The symptoms corresponding to reversible lesions, connected to tissues that are not functioning but that are not dead either, may see recovery. The symptoms connected to dead tissue, in case of being nervous tissue, do not disappear. This is why the liberation of the spinal cord should not be delayed, once the cause for the anomalous traction has been discovered.

  • I have had a subocciptal craniectomy surgery (with classical or minimally invasive technique) – will this affect my post-Sectioning of the filum terminale outcome?

In Arnold Chiari I patients who have already undergone one or more sub-occipital craniectomy, depending on the post-operative reversible or irreversible sequelae and taking into account possible associated, the outcomes of a Sectioning of the Filum Terminale could be partial with regards to those patients who have opted for the application of the Filum System® method only.

At the ICSEB we do not assess the surgical procedure of the suboccipital craniectomy, with classical or “minimally invasive” technique, as the approach in question has been discounted by the theory that all the studies developed by Dr Royo Salvador over more tan forty years are based on.

 

  • Does the progression of scoliosis come to a stop after the SFT?

Dr Royo Salvador’s theory has proven and documented how the development of scoliosis of less than 40º stops with the Sectioning of the Filum Terminale.

 

  • Is it possible that the column will straighten up again in the case of scoliosis after the sectioning of the filum terminale?

It is possible for some patients with scoliosis of less than 30º to experience a reduction of the curvature. Depending on the case, this may happen spontaneously or require the help of physiotherapy or wearing corsets.

1.4. THE POST-OPERATIVE PERIOD

  • After the surgery – what do I have to prepare for? (sick leave, medication, rehabilitation, follow ups)

After the Sectioning of the Filum Terminale with a minimally invasive technique, the main contraindication is to wet or to dirty the surgical wound, or to wash for the duration of ten days. After that time period, and with a physician’s permission, you can have showers, but you cannot take a full bath until forty days after the surgery.

Starting from the first days after the discharge, depending on each patient’s pain sensitivity in the surgical area, it is possible to return to normal life activities, work and school, provided of course that the activities do not involve physical efforts such as heavy lifting or maintained or repetitive positions and postures that can impair wound healing.

A post-operative follow up is indicated for approximately forty days after the surgery. During the appointment, depending on the state of the wound healing process, permission to re-take normal activity and indications for rehabilitation, physiotherapy and sports will be given according to each case.

The next medical follow up will take place one year post-op, a comparison between the current situation and with and update of the neuroimaging that showed lesions pre-operatively.

 

  • I experienced a marked improvement after the SFT, but now that some time has gone by, I feel that I am getting worse again; what is happening?

In the post-operative period after the Sectioning of the Filum terminale the symptoms and clinical manifestations may fluctuate, meaning decrease and/or increase in intensity/frequency/duration. These ups and downs may occur episodically during the first month or possibly during several months after the surgery.

We see that the majority of patients find a new stability to their sympotmatological picture one year after the surgery, whilst others do so starting on the first post-op day, and others later on, after one and a half or two years.

Please keep in mind that it is necessary to observe the clinical evolution and its phases long term together with the specialist so that the professional can assess the changes objectively.

  • After the SFT, the physician specified physical therapy – for how long should I continue?

The post-op rehabilitation indications and their duration are different for each patient, depending on many factors, such as the degree of affectation, the reversibility (or not) of the lesions, the conditions and possibilities to access physiotherapy centres in the patient’s home territory, etc.

Our specialists inform about the physiotherapy regimen in the check up appointment one month after the SFT.

 

  • I have been to physiotherapy centres, they say as I have undergone surgery in a foreign country, they do not dare taking on my case – what shall I do?

Our Institut works directly and reciprocally with Palermo’s Centro Medico Mantia in Italy, which has the only rehabilitation specialists on international level trained and prepared for post-Sectioning of the Filum Terminale treatment according to the exclusive Mantia-Royo physiotherapy guidelines.

If your home centre is not able to help you with planning a treatment, then you can choose one of the packs offered by the Centro Medico Mantia for patients from abroad. They consist in several days or weeks of appointments and intensive treatment sessions that will allow you to return home with personalised treatment indications.

If for personal reasons you are not able to opt for this possibility, our surgical team will be able to issue a report with general indications about the phases and goals of physiotherapy that they believe to be most suitable.

  • I am not from Barcelona and I have already returned home after the SFT. If I notice blood or pus on the surgical wound – can you help? Whom should I approach?

For cases patients operated recently who are no longer in Barcelona, for any incidences with the surgical wound or clinical state we advise to approach immediately an emergency service, your family doctor or a trusted surgeon, always keeping us informed so that our neurosurgeons can give their approval regarding the advised guidelines or care.

  • If I undergo surgery how long will it take before I can return to my usual activities?

The surgical wound needs at least forty days to scar correctly after the SFT. For the first ten days it is recommended not to wet the wound, and then, with the doctor’s permission you can shower but without taking a bath until day forty.

Regarding daily activities, we recommend to return to your usual activities without exerting yourself, meaning that patients can return to work or to their studies as soon as they get home, given that no lifting weight or other physical strains are involved that could have consequences in wound area.

If necessary, rehabilitation indications will be given at the six weeks check up appointment, or the return to the most adequate sports activity will be discussed.

1.5. THE LONG-TERM EVOLUTION

  • What will the clinical evolution after the SFT be like?

After the surgery, the patient can experience some fluctuation of the symptoms that were present previously and the clinical picture will typically stabilise in a new balance within few weeks, few months or within a term of approximately one year.

We have observed that the nervous system has the capacity to restore reversible lesions and functions that have seen themselves affected by the condition for many years during up to ten to fifteen years.







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