Regina Maria Desbesell Santos. Neuro-Cranio-Vertebral Syndrome. Filum Disease. Arnold-Chiari Syndrome Type I. Idiopathic Syringomyelia, Basilar Invagination, Platybasia, Kinking of the brainstem, Odontoid retroflexion, Atlas Assimilation and Multiple disc disease.

Published by ICSEB at 11 April, 2019

Surgery date: 1 February 2018
Filmed: 12 February 2018

Everything started with a simple test to renew her driver’s license. After being examined by a doctor, Mrs. Regina Desbesell failed the test because they found a problem in her eyes. After seeing an ophthalmologist, she knew that she had Nystagmus and because of that she was referred to a neurologist.

With the neurological consultation and other tests, they didn’t discover the cause of her problem. A few years later, Mrs. Desbesell began to experience instability and dizziness and she was unable to go up and down the stairs. She went through a series of tests again, with the misdiagnosis of labyrinthitis and anxiety, in addition to the suspicion of multiple sclerosis. When they made new magnetic resonances, they found that she had Arnold-Chiari Syndrome Type I and Syringomyelia.

Mrs. Desbesell’s doctors in Brazil indicated the suboccipital craniectomy, “a very aggressive surgery, which could leave me with many sequel.” She asked her doctor: “And what happens if don’t have the surgery?” and he replied: “You may have to live in a wheelchair and lose your strength completely”.

Mrs. Desbesell tried to stay calm and look for more information about her diagnosis. “I started searching and everything seemed to lead to the ‘Institut Chiari de Barcelona’. At first, I thought: ‘My God! Spain is very far away; it is out of my reality!’. I did a little bit more research about the surgical method in Brazil and compared it to the one here in Barcelona: this is a minimally invasive surgery, capable of halting the progression of the disease and improving my condition. I did not hesitate and underwent the surgery in Barcelona.

At the end of her story in this video, Mrs. Regina left a message to other patients. “I know sometimes it can be scary, but have no doubts in undergoing surgery at the Institut. You will have, like me, a new opportunity to have a better quality of life”.

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