Surgery date: May 16, 2023 Filmed: May 24, 2023

Caroline and Anna are triplet sisters from the US, both diagnosed of Arnold-Chiari I Syndrome.

A year ago, Caroline had decompression surgery, followed by the worsening of her symptoms and the appearing of new ones, like seizures, migraine, muscle weakness that made it almost impossible for her to walk up the stairs.

Despite not having undergone decompression, Anna has been suffering from very terrible migraines, headaches, nausea, pins and needles in her hands and feet for the past 4 years.

After Caroline’s case had been reviewed and she had been invited to Barcelona to undergo the minimally invasive Sectioning of the Filum Terminale, Anna decided to send her scans too and was offered the surgery as well. On May 16, they were both operated on at the Institut Chiari de Barcelona.

They have just had their wound check-up at the Institute and, with this video, they wish to express their happiness and amazement in seeing so many improvements after the intervention. “It had been so long since I knew what a healthy person would feel like”, said Caroline and for Anna “it’s just been amazing to see an afterlife that I used to have come back and I’m very excited for the rest of it”.

Email: [email protected]

Karyna: Filum Disease, Arnold-Chiari I Syndrome, Idiopathic Scoliosis and Multiple Disc Disease. Rostyslav: Filum Disease, Arnold-Chiari I Syndrome, Idiopathic Syringomyelia and Multiple Disc Disease.    

Surgery date: Karyna (13/02/2018) and Rostyslav (16/10/2018) Filmed: 17/10/2018
Alexandr and Natalia would like to share their experience at the Institut Chiari.
Karyna started to have her first symptoms when she was 6 years old: pain in her whole body, constant and intense headache, panic attacks and fear. She was diagnosed with Arnold-Chiari I Syndrome but her neuropathologist said that still she didn’t need any treatment, even if her parents were worried about her symptoms. Then they started to search for the information on the Internet and they found Institut Chiari de Barcelona, which uses a unique treatment method.
At the same time, her brother’s symptoms began: pain in his whole body. An MRI was conducted on him but he was not diagnosed with the Arnold-Chiari I Syndrome.
Having known that their daughter’s life was in danger, the parents wrote to Institut Chiari and they went to Barcelona to undergo surgery there. The stay in Barcelona and at the Institut turned out to be less complicated than they had thought. Karyna started to walk without any help on the very same day of the surgery. Back home, the symptoms began to disappear, her sleep quality improved and her fears diminished.
When they went to Barcelona with Karyna, they brought Rostyslav also with them. The doctor examined him at the Institut. During the visit, they discovered that the boy was more affected than his sister and he was a candidate for the Filum System® Method treatment with the diagnosis of Arnold Chiari Syndrome and Syringomyelia.
He was operated yesterday and he is fine. The parents thank the attention and the support of the Institut Chiari’s doctors. They recommend to all the patients who are suffering from similar symptoms to be informed about the treatment offered at the institute and they should not doubt or have fear; because they have seen that this treatment can stop the disease and they are happy that they could give a better future to their children.
E-mail: [email protected]

https://youtu.be/yiZURTfAlhc

Date of Anthony’s surgery: March 2012

Date of Laura’s surgery: June 2012

Mr. Ierano had been suffering from symptoms for some months in the right body half, like tingling, paralysis of the limbs, walking problems, trouble with one of  his eyes, etc, and they were beginning to be disabling.

Following different tests, once he received the diangsis Arnold Chiari I Syndrome, they suggested a craniectomy to him, and that’s when his and his family’s search for other possible solutions started.

The patient recalls that he discovered ICSEB over the Internet and how other patients that he contacted helped him to organise his trip to Barcelona in little time. He immediately approached Dr. Royo for a consultation and underwent the sectioning fo the filum terminale surgery the next day.

He mentions that the next day he had already a sensation of improvement and that in the follow up a month later almost all his upsets had decreased noticeably or disappeared.

Laura Ierano. Anthony’s sister, tells us that thanks to the information about the disease she got at ICSEB, her family found out about its possible family history and they carried out check up MRI scans.

On top of finding out this way that her cerebellar tonsils were at the border of the foramen magnum, the young patient took advantage of her brother’s follow up to have an a consultation herself, and she realised that a lot of symptoms that she did not attribute to the disease before: repeatedly urinary infections, abdominal pains, walking problems, headaches, problems with cold temperature sensitivity, nystagmus, burning feeling of the legs and the stomach and muscle spasms.

At that time, Laura was studying at the hotel management school, Dr. Royo recommended not to make physical efforts or lift weight until the liberation of the spinal cord, but during an internship the girl lifted a 3 kg tray. And she felt sick. Faced with a quick deterioration of the symptomatological picture, she decided to undergo emergency surgery in June 2012, because the pain had become unbearable.

The Ieranos are in Barcelona for their follow up one year after surgery and thank Dr. Royo and the ICSEB team for the improvement of their life quality and us from the team thank them for the help that they currently offer to other patients as AISACSISCO representatives.

Marie-Therese Ierano

Tel.: 0493279052

Email: [email protected]  

Laura Ierano

Tel.: 0493279052

Email: [email protected]

https://youtu.be/hGy43faWor8 Go to Marisa’s testimonial Surgery date: June 2009 Mrs. Toscano and her husband tell their story about their fight for health and against the disease that has affected the patient for more than ten years. After the appearance of different neurovegetative disorders, which were interpreted immediately as a “lack” in carrying out her activities, or as a mental problem, for years the patient got various “unlikely” diagnoses, from carpal tunnel to sclerosis, she even mentions that one doctor suggested to take a trip on a cruise ship! She recalls suffering so much due to not knowing what was one wrong with her, that she was even happy the day they told her had the Arnold Chiari I Syndrome. That is when she started a long search for information on the Internet, about the disease and its possible cures. None of the doctors she approached was able to help her, they only suggested decompression or imply that she wait until she got worse and not do anything meanwhile, leaving the craniectomy as a last choice. Despite her family’s scepticism regarding her approaching a unknown centre discovered over the Internet and given the fact that the symptoms were increasing, Marisa had a consultation with Dr. Royo in June 2009, and she underwent the SFT surgery. She explains that currently, in the check up four years after surgery, the symptoms have almost disappeared. She adds that thanks to the information received from Dr. Royo’s team about the possible family history of the Filum disease and the traction, she has also been able to help her daughter, who was suffering from scoliosis and headaches, and just like her, once she had been examined at the Institut, she underwent the same procedure with excellent results. After going through some difficult years the couple confirms finally having found a valid response to a health problem that seemed not to have any, also the patient’s husband tells us about the improvement in both their quality of life, not just the patient’s. The Antoci Toscanos are fighting a constant battle for the rights of Neuro-Cranio-Vertebral Syndrome and Filum Disease patients in order to be able to choose having surgery with Dr. Royo’s team at the Insitut Chiari de Barcelona, the only highly specialized centre in the treatment of the minimally invasive Sectioning of the Filum Terminale. Marisa’s testimonial: https://www.institutchiaribcn.com/index.php?idioma=6&arxiu=fitxa_document&id_familia=1503&id_subfamilia=4509&id=12296   Tel. (+39) 0921-381091 Tel. mobile 3207073770 E-mail: [email protected]

https://youtu.be/PGJgrsjK0W8 Asile’s testimonial Tel.: (+39) 3292971877

https://youtu.be/SysWezPz1qg Surgery date: November 2013 Hello, my name is Silvia, I am 14 years old and I’m from Madrid. Since I was ten years old, I had odd symptoms, like tummy aches, dizziness, ringing in the ears, and stiffness of my back…. At the hospitals they told me that there was nothing wrong with me that I was making it up. As my father knew Dr. Royo’s technique, he took me here and they diagnosed syringomyelia. I am here for the post-operative check up a month after surgery, I ‘ve recovered 99% of what was wrong and I am very satisfied.   Manuel Diaz’s testimonial, Silvia’s father Mr. Diaz’s email address: [email protected] Telephone: +34 649750454  

https://youtu.be/LKjRrspy5V4

Mrs Negri shares the testimonial regarding her personal and her daughters’, Alice and Aurora, experience. She tells us how she had been suffering from very strong headaches, loss of balance, pins and needles in the extremities, paresthesias since her childhood. The symptoms became ore acute over time until they were almost unbearable after her two pregnancies, especially after giving birth the second time.

She has a magnetic resonance done in 2010 and the test result was Arnold Chiari Syndrome. She approaches specialists in Italy who present the hypothesis if a decompression surgery, but she keeps on searching for possible alternatives until finding the Institut Chiari de Barcelona. Convinced by the testimonials of other patients and by the applied minimally invasive technique, she decides to undergo the Sectioning of the Filum terminale.

Mrs Negri tells us that her life has improved radically since that day: she does not have tuck herself away in bed with unbearable headaches, she has not missed another day of work, she has always been able to get up, cope with everything and raise her daughters, she can say that she is feeling well.

She explains that in the current year her oldest daughter, of eight years, has started to experience some symptoms and so she decided to have her and her little daughter of six years take a magnetic resonance scan. Both showed a descent of the cerebellar tonsils and so Mrs Negri, aware of her own experience, immediately decided to have both girls undergo the procedure.

The surgery was done in March 2014 and today, in the check up appointment, Alice and Aurora already display improvements in some aspects. Mrs Negri is aware that it will be necessary to observe their evolution, but she is confident due to what she experienced herself. She also hopes that her story is able to help other facing the same road, especially in the case of parents, who, as her, have to take choices about their children’s life.

Email: [email protected]

https://youtu.be/l7KyIzloLUg Surgery date: March 2013

Mrs Tiziana tells her four-year-old son Samuele’s story. It all started one morning when Samuele ha a fever and an episode of strong vertigo. The vertigo had appeared already three times before, so the worried parents decided to take him to hospital, where he was admitted for further testing.

A brain MRI showed that the child suffers from Arnold Chiari Syndrome. The parents were not ready to receive this diagnosis; they did not know anything about the condition. They were directed towards Rome for a decompression surgery; they did not accept this hypothesis, as it is a very complex procedure with many counter indications for such a young child.

They continue to search until finding Dr Royo. They decide to travel to Barcelona to the Institut Chiari, where during a consultation it is confirmed that Samuele does not only have Arnold Chiari with a descent of the cerebellar tonsils, bit also scoliosis and the Sectioning of the Filum terminale surgery is recommended for him.

Samuele undergoes surgery in March 2013. The mother explains how Samuele said he was feeling well after waking up and that he was jumping around like and playing a normal child only a few hours after surgery. Back home, Mrs Tiziana notices that the boy is different, and he also says so himself: before he used to incline the head whilst writing, he had a stiff neck, Little strength and he tired out from walking. Now he is playing football, he has grown a lot, he has put on weight, he goes about his life normally, he is a different child.

Mrs Tiziana recommends the surgery to everyone in order to stop the progress of the condition and to allow the children to be well. She very generously makes her telephone number available to anyone who would like to contact her: +39 334 729 4115.