Every 28 September, International Arnold–Chiari Syndrome Day is commemorated, a day dedicated to raising awareness of this neurological condition, promoting scientific research, and supporting affected individuals and their families.
The Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) and the Chiari & Syringomyelia & Scoliosis Foundation (CSSf) join this international initiative alongside healthcare professionals, associations, and institutions committed to the diagnosis, treatment, and research of Arnold–Chiari Syndrome Type I and related conditions.
Arnold–Chiari Syndrome Type I, also known as Chiari Malformation Type I, is anatomically characterized by the descent of the cerebellar tonsils through the foramen magnum, without other associated malformations of the spinal cord. Its origin remains the subject of ongoing research.
The objective of this day is clear: to raise awareness, promote research, and help patients.
Raising Awareness of Arnold–Chiari Syndrome Type I
Many people are unfamiliar with Arnold–Chiari Syndrome Type I or believe that it affects only the brain. However, it is a condition that can present very differently from one person to another.
Some patients remain asymptomatic and discover the descent of the cerebellar tonsils incidentally during an MRI scan performed for another reason.
In other cases, the condition can cause symptoms that significantly limit quality of life and may even result in substantial disability.
Symptoms can affect the entire nervous system and may include:
- Headaches and neck pain.
- Dizziness and vertigo.
- Loss of strength in the extremities
- Sensory alterations and neuropathic pain.
- Balance disorders.
- Swallowing difficulties.
- Sleep apnea.
- Insomnia.
- Memory and concentration problems.
- Speech disorders.
- Thoracic and lower back pain.
Each patient experiences a different course of the disease, which is why diagnosis and treatment must be individualized.
ICSEB research into Arnold-Chiari I Syndrome
Research is one of the fundamental pillars of the Institut Chiari & Siringomielia & Escoliosis de Barcelona.
With the support of the Chiari & Syringomyelia & Scoliosis Foundation (CSSf), the ICSEB Research Department studies Filum Disease and its possible relationship with Arnold–Chiari I Syndrome, syringomyelia, and other neurological conditions.
This line of research develops the caudal traction theory, according to which a congenitally abnormal and excessively tight Filum terminale could exert permanent traction on the entire central nervous system, promoting the descent of the cerebellar tonsils and the development of characteristic symptoms.
This approach has led to the development of the Filum System® health method, which includes the design of the minimally invasive sectioning of the Filum terminale with the aim of eliminating pathological traction and halting disease progression. According to ICSEB’s clinical experience, this procedure considerably reduces the risks associated with conventional neurosurgical techniques used to treat Arnold–Chiari Type I, such as decompressive craniectomy and various forms of suboccipital decompression.
The team lead by Dr. Miguel B. Royo Salvador continues to conduct new research into this physiopathological hypothesis and to publish scientific studies that contribute to the
understanding of this condition.
How to Help People with Arnold–Chiari I Syndrome
The Chiari & Syringomyelia & Scoliosis Foundation (CSSf) works to improve the lives of affected individuals through:
- Scientific dissemination.
- Professional training and patient education.
- Support for research.
- Financial aid for people with diseases related to Filum Disease.
Many patients from different countries face difficulties accessing highly specialized treatments that are not covered by their healthcare systems, such as the Filum System ® .
Thanks to donations, the CSSf can provide financial assistance to patients with limited resources who need to receive treatment at the Institut Chiari & Siringomielia & Escoliosis de Barcelona.
If you would like to support the CSSf and help more people access specialized treatment, you can make a donation to the Chiari & Syringomyelia & Scoliosis Foundation through the following link: https://chiarifoundationbcn.com/donar/
International Arnold–Chiari Syndrome Day: Together, we raise awareness
International Arnold–Chiari Syndrome Day is an opportunity to remember that thousands of people live with a condition that remains poorly understood and, in many cases, underdiagnosed.
Scientific research, dissemination, and collaboration among professionals, institutions, and patients are essential to improving diagnosis, developing new treatments, and providing a better quality of life for those living with this condition.
On this 28 September, the Institut Chiari & Siringomielia & Escoliosis de Barcelona and the Chiari & Syringomyelia & Scoliosis Foundation reaffirm their commitment to research, specialized care, and support for everyone affected by Arnold–Chiari I Syndrome.