{"id":51252,"date":"2017-09-22T00:00:43","date_gmt":"2017-09-21T22:00:43","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/testimonios\/trois-petit-freres-syndrome-neuro-cranio-vertebral-maladie-du-filum-syndrome-darnold-chiari-i\/"},"modified":"2026-03-19T11:33:36","modified_gmt":"2026-03-19T10:33:36","slug":"trois-petit-freres-syndrome-neuro-cranio-vertebral-maladie-filum-syndrome-darnold-chiari-i","status":"publish","type":"testimonios","link":"https:\/\/institutchiaribcn.com\/fr\/trois-petit-freres-syndrome-neuro-cranio-vertebral-maladie-filum-syndrome-darnold-chiari-i\/","title":{"rendered":"Trois petit fr\u00e8res, Syndrome Neuro-Cr\u00e2nio-vert\u00e9bral, Maladie du Filum, Syndrome d\u2019Arnold Chiari I"},"content":{"rendered":"<p>&nbsp;<\/p>\n<p><strong>Dates des 3 interventions: 2014 et 2016<\/strong><\/p>\n<p>Bonjour!<\/p>\n<p>Nous sommes les parents de trois merveilleux enfants qui ont eu la mauvaise chance d\u2019\u00eatre n\u00e9 avec la pathologie de Chiari I. On s\u2019imagin\u00e9 pas qu\u2019il pouvait exister cette maladie. Tout a commenc\u00e9 pendant les premi\u00e8res ann\u00e9es de vie de notre fille a\u00een\u00e9e. Elle avait des vomissements cycliques et apr\u00e8s, au fur et \u00e0 mesure elle grandissait, elle a commenc\u00e9 avec des maux de t\u00eate, la musique lui d\u00e9rang\u00e9, la lumi\u00e8re, etc.<\/p>\n<p>Nous avons fait des tours par toute l\u2019Italie pour comprendre en quoi consist\u00e9 cette pathologie. Notre avant-derni\u00e8re visite \u00e0 l\u2019H\u00f4pital Bambin Ges\u00fa de Rome, o\u00f9 \u00a0le chef\u00a0 de neurologie l\u2019a visit\u00e9 et lui a diagnostiqu\u00e9 une simple c\u00e9phal\u00e9e, sans consid\u00e9rer n\u00e9cessaire de r\u00e9aliser un autre examen. Quand on lui a comment\u00e9 que notre fille avait plusieurs probl\u00e8mes comme la fatigue dans les jambes, vertiges, c\u00e9phal\u00e9es, etc\u00a0; le neurologue nous a dit de nouveau que cela consist\u00e9 d\u2019une simple c\u00e9phal\u00e9e.<\/p>\n<p>N\u2019\u00e9tant pas satisfait avec cette conclusion, nous avons consult\u00e9 avec l\u2019H\u00f4pital Umberto I de Rome, o\u00f9 ils ont pr\u00eat\u00e9 plus d\u2019attention et ils ont indiqu\u00e9 de faire une r\u00e9sonance magn\u00e9tique. Le technicien de radiologie de l\u2019h\u00f4pital nous a donn\u00e9 alors le diagnostique incorrect de Chiari II. \u00c0 partir de l\u00e0, notre calvaire a commenc\u00e9.<\/p>\n<p>Nous avons commenc\u00e9 \u00e0 chercher de mani\u00e8re d\u00e9sesp\u00e9r\u00e9e sur internet, nous avons contact\u00e9 avec tous les h\u00f4pitaux les plus connus d\u2019Italie et l\u2019Am\u00e9rique. Finalement nous avons contact\u00e9 avec l\u2019Institut Chiari de Barcelona (Espagne), o\u00f9 ils ont imm\u00e9diatement compris la pathologie de notre fille, c\u2019\u00e9tait un Chiari I. Nous avons commenc\u00e9 \u00e0 nous informer, \u00e0 contacter aux personnes qui avaient d\u00e9j\u00e0 \u00e9t\u00e9 op\u00e9r\u00e9 avec des grands r\u00e9sultats. Nous avons d\u00e9cid\u00e9 de confier et de faire op\u00e9rer \u00e0 notre fille.<\/p>\n<p>Depuis ce jour l\u00e0, la vie de notre fille a chang\u00e9. D\u00e9j\u00e0 un mois apr\u00e8s l\u2019intervention, quand nous \u00e9tions revenu \u00e0 Barcelone pour la visite de contr\u00f4le, elle a pu marcher 10 km dans la ville, par rapport avant la chirurgie, elle n\u2019arrivait pas \u00e0 marcher plus de 100 m\u00e8tres. Elle pouvait \u00e9couter la musique tranquillement dans la voiture, ce qui n\u2019\u00e9tait pas le cas \u00e0 cause des c\u00e9phal\u00e9es que cela lui provoqu\u00e9e.<\/p>\n<p>Avec l\u2019exp\u00e9rience de notre premi\u00e8re fille, nous avons remarqu\u00e9 des sympt\u00f4mes similaires sur nos deux autres enfants. Alors, nous les avons amen\u00e9 \u00e0 Barcelone pour qu\u2019ils soient op\u00e9r\u00e9s avec des excellents r\u00e9sultats.<\/p>\n<p>Nous voulons exprimer nos remerciements de tout c\u0153ur au Prof. Royo, au Dr. Fiallos, \u00e0 Elena Vitturi, \u00e0 Gioia Lu\u00e8 et \u00e0 toute l\u2019\u00e9quipe. Vous nous avez donn\u00e9 une nouvelle esp\u00e9rance de vie, pour nous et pour nos enfants qui finalement vont bien.<\/p>\n<p>Fabio: +39 335.6043769<\/p>\n","protected":false},"featured_media":0,"template":"","tipos-de-testimonio":[343],"class_list":["post-51252","testimonios","type-testimonios","status-publish","hentry","tipos-de-testimonio-temoignages-familles"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.1.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Trois fr\u00e8res: syndrome Filum et Arnold Chiari | ICSEB<\/title>\n<meta name=\"description\" content=\"Famille partage le v\u00e9cu de trois enfants avec syndrome neuro\u2011cr\u00e2nio\u2011vert\u00e9bral et Arnold\u2011Chiari\u202fI \u00e0 l\u2019ICSEB.\" \/>\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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