{"id":49911,"date":"2017-05-26T00:00:00","date_gmt":"2017-05-25T22:00:00","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/testimonios\/kazuko-suzuki-sindrome-neuro-cranio-vertebral-malaltia-del-filum-descens-de-les-amigdales-cerebelloses-siringomielia-escoliosi-i-discopatia-multiple\/"},"modified":"2026-03-17T10:34:00","modified_gmt":"2026-03-17T09:34:00","slug":"kazuko-suzuki-sindrome-neuro-cranio-vertebral-malaltia-filum-descens-amigdales-cerebelloses-siringomielia-escoliosi-discopatia-multiple","status":"publish","type":"testimonios","link":"https:\/\/institutchiaribcn.com\/ca\/kazuko-suzuki-sindrome-neuro-cranio-vertebral-malaltia-filum-descens-amigdales-cerebelloses-siringomielia-escoliosi-discopatia-multiple\/","title":{"rendered":"Kazuko Suzuki: S\u00edndrome Neuro-Cranio-Vertebral. Malaltia del Filum. Descens de les Am\u00edgdales Cerebel\u00b7loses, Siringomi\u00e8lia, Escoliosi i Discopatia m\u00faltiple."},"content":{"rendered":"<p>&nbsp;<\/p>\n<div class=\"row\">\n<div class=\"col-md-6\"><\/div>\n<div class=\"col-md-6\"><\/div>\n<\/div>\n<p><strong>Data de la intervenci\u00f3: mar\u00e7 del 2016<\/strong><\/p>\n<p style=\"text-align: justify;\">Escrivim aquest testimoni amb l\u2019esperan\u00e7a que els que tenen les mateixes malalties que la nostra filla, la Kazuko, i han arribat fins a la p\u00e0gina web de l\u2019Institut Chiari de Barcelona, considerin com a alternativa per a tractar-se un centre m\u00e8dic que es troba a l\u2019estranger. No podem m\u00e9s que estar agra\u00efts amb tot l\u2019equip de l\u2019Institut Chiari de Barcelona.<\/p>\n<p style=\"text-align: justify;\">Quan la nostra filla tenia 11 anys, a mesura que r\u00e0pidament anava creixent, la seva postura anava empitjorant i s\u2019inclinava cada cop m\u00e9s cap a l\u2019esquerra. Cada dia li d\u00e8iem que es poses recta. No creiem necessari fer radiografies o resson\u00e0ncies magn\u00e8tiques ja que simplement pens\u00e0vem que no adoptava una bona postura. El primer s\u00edmptoma que tenia la Kazuko va ser al mes de febrer de quan tenia 13 anys i consistia en un formigueig a la cama esquerra. M\u00e9s tard, va tenir formiguejos a la ma esquerra, marejos, mals de cap i v\u00f2mits. Quan li vam fer les resson\u00e0ncies magn\u00e8tiques a l\u2019hospital general del nostre barri, van descobrir les malalties que tenia la Kazuko.<\/p>\n<p style=\"text-align: justify;\">A l\u2019informe de les resson\u00e0ncies hi posava un diagn\u00f2stic que mai no hav\u00edem escoltat: Malformaci\u00f3 de Chiari I i Siringomi\u00e8lia. No enten\u00edem la gravetat d\u2019aquestes malalties, per\u00f2 ens recordem molt b\u00e9 que el metge es va posar molt seri\u00f3s quan ens ho va explicar. Ens va dir que l\u2019\u00fanic tractament per a aquestes malalties era la cirurgia i, a m\u00e9s a m\u00e9s, al cap. Ens feia molta por perqu\u00e8 fins al moment la nostra filla mai havia tingut una malaltia greu i gaudia de bona salut. La Kazuko tampoc esperava que s\u2019hauria d\u2019operar.<\/p>\n<p style=\"text-align: justify;\">Quan vam arribar a casa, vam comen\u00e7ar a buscar informaci\u00f3 sobre les malalties i tot el que vam trobar van ser coses negatives. Ens vam horroritzar mentre ho lleg\u00edem. Tot i aix\u00ed, el contingut de la p\u00e0gina web de l\u2019Institut Chiari de Barcelona era completament diferent i ens va donar un bri d\u2019esperan\u00e7a. No obstant, ens vam quedar at\u00f2nits quan ens vam assabentar que no es practicava la Secci\u00f3 del Filum Terminale al Jap\u00f3. De seguida ens vam posar en contacte amb el personal de l\u2019Institut Chiari de Barcelona, la Sra. Takahashi. En aquell moment, els s\u00edmptomes de la nostra filla no milloraven, aix\u00ed que no podia anar ni a l\u2019escola. Est\u00e0vem entre anar a l\u2019hospital japon\u00e8s on es practicava de forma habitual la craniotomia, o a l\u2019Institut Chiari de Barcelona. La nostra decisi\u00f3 va ser la primera; ja que no v\u00e8iem que la nostra filla tingu\u00e9s for\u00e7a o \u00e0nims per a viatjar fins a Barcelona. Ens vam posar en contacte de nou amb la Sra. Takahashi per a comunicar-li que ens sabia molt de greu, per\u00f2 que desist\u00edem d\u2019anar a Barcelona. Segurament hagu\u00e9ssim pres la decisi\u00f3 d\u2019anar a Barcelona si els s\u00edmptomes de la Kazuko haguessin estat m\u00e9s lleus.<\/p>\n<p style=\"text-align: justify;\">Finalment, a l\u2019abril del 2015 vam poder reservar la craniotomia a l\u2019hospital toquiota i es va operar despr\u00e9s d\u2019haver hagut de canviar d\u2019hospital diverses vegades. El postoperatori va anar molt b\u00e9 i ens va alegrar molt\u00edssim perqu\u00e8 els dolorosos s\u00edmptomes de la nostra filla van desapar\u00e8ixer completament. Tota la fam\u00edlia ens vam alegrar molt de l\u2019\u00e8xit de la craniotomia.<\/p>\n<p style=\"text-align: justify;\">Respecte a l\u2019escoliosi: despr\u00e9s de la craniotomia, la Kazuko es va visitar a l\u2019hospital general del nostre barri on hi havia experts en escoliosi. En aquell moment tenia una escoliosi de 25\u00ba. Ara porta Cotilla \u00fanicament a les nits.<\/p>\n<p style=\"text-align: justify;\">A l\u2019agost del 2015, tres mesos despr\u00e9s de la intervenci\u00f3, vam anar a l\u2019hospital toquiota per a fer un control; encara que tamb\u00e9 ten\u00edem la intenci\u00f3 d\u2019aprofitar la nostra est\u00e0ncia a la capital, ja que despr\u00e9s de la craniotomia no semblava que hagu\u00e9s aparegut cap s\u00edmptoma, per a fer turisme. Quan est\u00e0vem a l\u2019hospital, a la Kazuko li van fer resson\u00e0ncies magn\u00e8tiques i el metge ens va dir que l\u2019haurien de tornar a operar i posar-li un cat\u00e8ter en menys d\u2019un any, ja que no es veia una reducci\u00f3 de la cavitat siringomi\u00e8lica, i que les am\u00edgdales cerebel\u00b7loses havien descendit una mica m\u00e9s. Aquest diagn\u00f2stic era el que menys ens esper\u00e0vem perqu\u00e8 ens semblava que la Kazuko estava perfecta. Per descomptat que ten\u00edem confian\u00e7a en el metge, per\u00f2 ens resist\u00edem a sotmetre a la nostra filla a la col\u00b7locaci\u00f3 d\u2019un cat\u00e8ter.<\/p>\n<p style=\"text-align: justify;\">El meu marit i jo, una vegada m\u00e9s ens trob\u00e0vem perduts, per\u00f2 al final vam decidir anar a Barcelona. Aquest cop la nostra filla tenia les forces necess\u00e0ries per aguantar el llarg viatge i sobretot, per la Sra. Takahashi, que tractant-nos amb franquesa ens va donar la confian\u00e7a per creure en l\u2019Institut Chiari de Barcelona. L\u2019objectiu del seu tractament, la secci\u00f3 del filum terminale, \u00e9s el d\u2019eliminar la causa de les malalties, i aix\u00f2 va ser molt convincent; entre tota la fam\u00edlia ens vam posar a parlar de la possibilitat d\u2019anar a Barcelona. Vam arribar a la conclusi\u00f3 que el m\u00e9s important per a la nostra filla era parar les malalties, ja que t\u00e9 tota la vida per endavant i, si existeix un centre especialitzar per a les seves malalties malgrat que estigui a l\u2019estranger, est\u00e0vem disposats a anar-hi i que reb\u00e9s el tractament. Per damunt de tot, la secci\u00f3 del filum terminale era menys invasiva que la col\u00b7locaci\u00f3 del cat\u00e8ter. Aix\u00ed que, ens vam decidir anar a Barcelona.<\/p>\n<p style=\"text-align: justify;\">Al mar\u00e7 del 2016, vam agafar l\u2019avi\u00f3 i, despr\u00e9s de passar una nit a l\u2019hotel, vam anar a l\u2019Institut Chiari de Barcelona. La nostra filla es va visitar amb el Dr. Fiallos i vam escoltar la seva opini\u00f3 amb la traducci\u00f3 simult\u00e0nia de la Sra. Yuka Takahashi. Una vegada acabada la visita, vam anar a l\u2019Hospital Cima a fer unes proves breus. No ten\u00edem cap tipus de preocupaci\u00f3. Donat que tant el Dr. Fiallos com la Sra. Takahashi ens van tractar amb molta estima, el meu marit i jo vam poder estar tranquils el dia de la intervenci\u00f3, i est\u00e0vem segurs que la nostra filla sentia el mateix.<\/p>\n<p style=\"text-align: justify;\">La intervenci\u00f3 va anar molt b\u00e9 i va durar menys d\u2019una hora. Vaig passar la nit a l\u2019Hospital CIMA amb la Kazuko i ens va sorprendre molt\u00edssim com era l\u2019habitaci\u00f3 de l\u2019hospital: era molt maca, semblava la d\u2019un hotel!. Donat que ens van dir que era recomanable caminar despr\u00e9s de l\u2019alta i ten\u00edem deu dies fins a la propera visita, vam procurar passejar tant com vam poder. Abans de tornar al Jap\u00f3, vam pensar que estaria b\u00e9 si pogu\u00e9ssim fer com a m\u00ednim un dia de turisme per Barcelona. Ens ho vam passar molt b\u00e9 aquells dies, com si el motiu principal de la nostra est\u00e0ncia a Barcelona hagu\u00e9s estat fer turisme.<\/p>\n<p style=\"text-align: justify;\">Moltes gr\u00e0cies per tot a tot l\u2019equip de l\u2019Institut Chiari de Barcelona. Els presentem els nostres respectes i els agra\u00efm de tot cor.<\/p>\n","protected":false},"featured_media":44094,"template":"","tipos-de-testimonio":[325],"class_list":["post-49911","testimonios","type-testimonios","status-publish","has-post-thumbnail","hentry","tipos-de-testimonio-testimonis-sft-despres-duna-craniotomia-suboccipital"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Kazuko Suzuki: siringomielia i escoliosi | ICSEB<\/title>\n<meta name=\"description\" content=\"Data de la intervenci\u00f3: mar\u00e7 del 2016 Escrivim aquest testimoni amb l\u2019esperan\u00e7a que els que tenen les mateixes malalties que... \u00a0 Llegir m\u00e9s \u2192\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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