Kazuko Suzuki: Neuro-Cranio-Vertebral Syndrome. Filum Disease. Descent of the cerebellar tonsils, syringomyelia, Scoliosis, Disc Disease.

Published by ICSEB at 19 January, 2017

Surgery date: March 2016

We are writing this testimonial hoping that others with the same conditions as our daughter Kazuko who have found the Institut Chiari de Barcelona website will consider a foreign medical centre as an alternative to treat. We can only thank the team at the Institut Chiari de Barcelona.

When our daughter was eleven years old, and with her rapid growth, her posture kept getting worse, she tilted towards the left. We told her every day to correct her posture. We did not think that it was necessary to get x-rays or MRI scans. We just thought that she adopting a bad posture. Kazuko had her first symptom in February when she was 13 years old; it consisted of tingling in her left leg. Later on, she had tingling in the left hand, dizziness, headache and vomiting. They found the diseases Kazuko was suffering from when she had magnetic resonance scans at our neighbourhood’s hospital.

The scan’s report read a diagnosis that we had never heard before: “Chiari I malformation” and “Syringomyelia”. We did not understand the severity of the conditions, but we do remember that the physician turned very earnest when telling us. He told us that the only treatment for the conditions was surgical, and moreover in the head! We were very afraid, because our daughter had never had a serious illness before and had enjoyed good health. Kazuko did not expect undergoing a surgery either.

When we arrived at home, we started to look for information on the conditions. Everything written on the diseases was only negative. Reading this terrified us. Nevertheless, the content of the Institut Chiari de Barcelona website was completely different and offered us a ray of hope. Albeit, we were astonished when we found out that the Sectioning of the Filum Terminale is not performed in Japan. We immediately contacted the Institut Chiari de Barcelona staff, Mrs Takahashi. At that time, our daughter’s symptoms were not improving and she was not able to attend school. We were undecided between going to the hospital in Japan where more commonly craniectomies are being performed, or going to the Institut Chiari de Barcelona. We went with the first option because we could not see our daughter having the strength or spirit of travelling to Barcelona. We contacted again with Mrs Takahashi and told her that we were very sorry but that we had given up on going to Barcelona. Most probably we would have taken the decision to go to Barcelona, had Kazuko’s symptoms been milder.

Finally, in April 2015, we were able to book the craniectomy at the Tokyo hospital and she underwent surgery after having changed hospitals several times. The post-operative period went very well and we were very happy because our daughter’s painful symptoms disappeared completely. All our family was happy with the successful Craniectomy.

(Regarding her scoliosis: after the Craniectomy, Kazuko went to a general hospital in our neighbourhood that has scoliosis experts. She then had a scoliosis of 25 degrees. Nowadays she wears a brace, but only during the night.)

In August 2015, three months after the operation, we went to the hospital in Tokyo for a follow up and also had the intention of visiting tourist sites in the capital, given that no symptoms had reappeared since the Craniectomy. Kazuko had new magnetic resonance scans done at the hospital and the physician told us that they would have to operate to place a shunt in less than a year because they were not seeing a reduction of the syringomyelic cavity and that the cerebellar tonsils had descended a little. His opinion was the last thing we were expecting, because it seemed that Kazuko was in perfect shape. Of course we trusted the doctor, but we were holding off having our daughter undergo a shunt placement surgery.

My husband and I were feeling lost again, but in the end we decided to go to Barcelona. Our daughter now had the strength to withstand the long trip and because of Mrs Takahashi, who treated us with the necessary sincerity trust the Institut Chiari de Barcelona. The aim of their treatment, the Sectioning of the Filum Terminale, is to “eliminate the cause of the diseases”, and that was very convincing. We started discussing the possibility of going to Barcelona in the whole family and reached the conclusion halting the conditions was the most important for our daughter as she has her life still in front of her, and if there was a specialist centre for her conditions, we were prepared to go there to get treatment, even if it was abroad. And above all, the Sectioning of the Filum Terminale was less invasive than the shunt placement. So we decided to go to Barcelona.

We took the plane to Barcelona in March 2016 and after spending one night at the hotel, we went to the Institut Chiari de Barcelona. Our daughter was had the appointment with Dr Fiallos and we listened to his opinion through Mrs Takahashi’s translation. Once the consultation was over, we went to the CIMA Hospital to do tests. We had absolutely nothing to worry about given that Dr Fiallos as well as Mrs Takahashi treated us with affection; my husband and I were able to be very calm on the day of the procedure and sure that also our daughter was feeling the same.

The surgery went well and lasted less than an hour. I stayed over night with Kazuko at the CIMA hospital and we were surprised at seeing the hospital room, because it was so nice it seemed a hotel room!! Given that we were told that walking was recommendable after the discharge form hospital, during the ten days until the next appointment, we tried to take walks as well as we could. Before leaving Japan we thinking that it would be nice if we could spend at least day doing tourism in Barcelona, but we had such a good time during those days as if tourism had been the main objective of our stay in Barcelona.

Many thanks to the entire team of the Institut Chiari de Barcelona. We pay our respects and our heartfelt gratitude.