Published by ICSEB at 2 September, 2015
Date of surgery: July 2014
A year ago (2014) our daughter was operated in the Institut Chiari de Barcelona. Now she is feeling very good. All thanks to the surgery that was done at the Institut Chiari de Barcelona. Now, as a year has passed after the surgery, my wife and I have decided to summarize our experience and opinion about the treatment in this testimony, hoping that it would be useful for patients who are suffering from the same disease as our daughter.
She was operated in July 2014 for having Arnold Chiari I Syndrome. She was 14 years old then. She was the sixth Japanese to be operated at ICSEB. How did we find out that she was suffering from Arnold Chiari I? It happened during the vacations in December 2013. She was hospitalized because she had severe nausea, headache, tingling in all limbs and lost consciousness. She had a CT scan and an MRI that showed that she was suffering from Arnold Chiari I Syndrome. Later, the same symptoms appeared which she had when we were travelling and we took her to hospital, where she was admitted three times. Despite that, the diagnosis that we got was just a migraine and was not related with Arnold Chiari Syndrome I at all.
Really, our daughter had been hospitalized once when she was 5 years old for having the same symptoms. In those times, the doctors suspected epilepsy and she had to take medicines for 5 years. We remember very well how our daughter was suffering and we felt very bad because we didn’t know what we could do for saving her. It’s true that sometimes she had symptoms but the symptoms that she had while we were travelling were so identical to the ones she had when she was 5 years old that it reminded us those horrible days. Pondering over the past, we believe that Chiari surely caused her symptoms, which were attributed to epilepsy. We think that this aspect is one of the characteristics of Chiari that makes it difficult to relate the disease with symptoms.
In February last year, we started looking for the information on the Arnold Chiari Syndrome on internet and understood that there were many patients suffering from this disease and other diseases which are difficult to cure might appear such as syringomyelia along with Chiari. The conventional surgery practiced in Japan for Chiari has no guarantee of curing the disease. Although one can get postoperative improvements, it is temporary and then the same old symptoms return. While looking for the information about the disease, we found Institut Chiari de Barcelona who practiced a surgery that was different than the one practiced in Japan.
In March, we took our daughter to a university hospital of Japan, which is well known for Chiari treatment, to hear their opinion. The doctor said; “As the symptoms did not appear continuously, we will do regular check-ups and when the disease gets worse, we will think about surgery”. We had doubts about the cause of her symptoms. Even our daughter doubted the opinion of the Japanese doctor.
Then we began to look for the ways to prevent the worsening of the disease and improve the health of our daughter. Meanwhile, we sent the MRIs to the Institut Chiari of Barcelona along with the description of her health status. They explained us the relationship between the disease and her symptoms and they asked us to get a thoracic MRI to complete the study of her case, which was hard to get. While we were getting the new images done, we began to think that the best option for her would be the one that had been indicated to us in Japan, to go for regular check-up, as we did not see any worsening of his health. However, our opinion changed when we were told that the detailed study of the new MRI showed a pre-syringomyelia and it had to be operated as soon as possible. It was in June last year when we decided to get our daughter operated. “We cannot cure the disease, but we can stop the progression of the disease” it is what the Institut Chiari de Barcelona told us, and that convinced us to put her in their hands. Moreover, the surgery practiced by Institut Chiari de Barcelona is less invasive and hospitalization duration is lesser than the conventional surgery practiced in Japan. We thought if this surgery did not prove effective, we would consider going the surgery in Japan as another remedy. Although fortunately our daughter had only temporary symptoms that permitted her to lead a normal life, we opted for the surgery of the Institut Chiari de Barcelona because we did not want our daughter to suffer more when those strong symptoms reappeared and because we wanted to stop the evolution of Chiari . We took our decision without consulting our parents because we did not want to worry them.
The thing that made us doubt was the difference in the opinion between Japanese doctors and the Institut Chiari de Barcelona and the question: why to have a surgery abroad, and not in Japan? Our conclusion was that we were in favour of the opinion of Institut Chiari de Barcelona, and it did not matter much where the surgery was done. According to the testimonials of the patients from different countries of Institut Chiari de Barcelona, they did not receive adequate advice in their country, as happened to us and had spent many years to find the Institut Chiari of Barcelona. All of them commented that they had experienced some improvement and were grateful to the Institut Chiari de Barcelona team. The testimonials convinced us a lot, and talking to the 3 pervious Japanese patients also helped us to take us our decision. We realized that it was very important to hear the both views and concerns of people who are in the same situation as us.
We know that the Japanese are reluctant to have surgery abroad although there isn’t other option, but the staff at Institut Chiari de Barcelona transmitted us every word spoken by doctors in our Japanese language, and it reassured us a lot. We had no problem in communicating with the doctors straight from the first visit to the surgery. Perhaps on the one hand, as we live abroad for my work, we did not hesitated to take our daughter abroad to get operated. On the other hand, the opinions of the Japanese doctors did not influence us as because we are not in Japan.
Finally, we admire the dedication of the Institut Chiari de Barcelona for providing the assistance in several languages to help and solve the problems of the patients from around the world. If the information had not been available in Japanese at Institut Chiari of Barcelona, it would have cost us a lot to find the centre or just we would not have found it. I thank Dr. Royo, Dr. Fiallos and Ms. Yuka Takahashi for their sincerity and treatment, also to all the staff of the Institut Chiari de Barcelona for the very kind treatment during our stay in Spain.
We hope that patients in the same situation as our daughter can solve their problems thanks to the treatment of Institut Chiari de Barcelona.
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