{"id":111614,"date":"2017-07-07T00:00:16","date_gmt":"2017-07-06T22:00:16","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/videos\/ginevra-mari-sindrome-neuro-cranio-vertebral-malaltia-del-filum-siringomielia-idiopatica\/"},"modified":"2026-03-18T10:30:27","modified_gmt":"2026-03-18T09:30:27","slug":"ginevra-mari-sindrome-neuro-cranio-vertebral-malaltia-filum-siringomielia-idiopatica","status":"publish","type":"videos","link":"https:\/\/institutchiaribcn.com\/ca\/ginevra-mari-sindrome-neuro-cranio-vertebral-malaltia-filum-siringomielia-idiopatica\/","title":{"rendered":"Ginevra Mari. S\u00edndrome Neuro-Cranio-Vertebral. Malaltia del Filum. Siringomi\u00e8lia idiop\u00e0tica."},"content":{"rendered":"<div class=\"panel panel-default panel-body\">\n<p>&nbsp;<\/p>\n<p style=\"text-align: justify;\"><strong>Data de la intervenci\u00f3: 12\/1\/2016<\/strong><br \/>\n<strong>Data del v\u00eddeo: 08\/5\/2017<\/strong><\/p>\n<p><strong>\u00a0<\/strong>La Ginevra Mari \u00e9s una pacient italiana de 18 anys que, acompanyada per la seva mare, ens explica la seva experi\u00e8ncia amb la malaltia: des de les primeres mol\u00e8sties lleus, passant pel progressiu empitjorament fins a la intervenci\u00f3 de la Secci\u00f3 del Filum Terminale. En motiu de la seva visita de control a l\u2019ICSEB, a l\u2019any i mig de la intervenci\u00f3, ha volgut realitzar aquest v\u00eddeo-testimoni per compartir la seva hist\u00f2ria.<\/p>\n<p>Refereix que ja des de petita va tenir lleus mol\u00e8sties, sobretot a la part dreta del seu cos i tamb\u00e9 al cap, a les que mai hi va donar massa import\u00e0ncia creient que es tractava de dolors deguts al creixement. Als 15 anys, va comen\u00e7ar a tenir: fortes mol\u00e8sties al cap, p\u00e8rdua de for\u00e7a al bra\u00e7 dret, no podia caminar b\u00e9, tenia problemes d\u2019equilibri i mol\u00e8sties a la cama dreta. Aleshores va decidir anar a un ortopedista pensant que els seus problemes no fossin m\u00e9s aviat posturals; per\u00f2 pel que semblava res tenia a veure amb la postura.<\/p>\n<p>Des d\u2019aleshores, va comen\u00e7ar el llarg cam\u00ed de visitar-se amb diferents metges de tota It\u00e0lia sense aconseguir una explicaci\u00f3 als seus problemes i, sobretot, amb la preocupaci\u00f3 de no saber si es tractava d\u2019un problema psicol\u00f2gic o f\u00edsic. A finals de setembre del 2015, va comen\u00e7ar a tenir fortes mol\u00e8sties al bra\u00e7 que van anar empitjorant amb el temps fins arribar a la par\u00e0lisi gaireb\u00e9 total. Anava al Liceu Art\u00edstic (Institut) i no podia ni signar ni dibuixar, nom\u00e9s podia fer les proves orals. Va seguir amb el seu pelegrinatge de doctor en doctor, sense aconseguir una conclusi\u00f3, fins que la van ingressar en un hospital de Roma i despr\u00e9s d\u2019una resson\u00e0ncia magn\u00e8tica, la van diagnosticar de Siringomi\u00e8lia. La Ginebra no sabia ni que era aquesta patologia i, buscant per internet, va trobar una relaci\u00f3 entre molts dels seus s\u00edmptomes i aquesta malaltia. La recerca d\u2019alg\u00fa que pogu\u00e9s ajudar-la seguia paral\u00b7lela al seu empitjorament, tenia la meitat del cos gaireb\u00e9 paralitzada. La seva vida transcorria al llit sense tenir vida social i havent deixat l\u2019escola.<\/p>\n<p>Un dia, sense saber qu\u00e8 m\u00e9s podia fer, va buscar per internet el nom de la seva malaltia i va trobar l\u2019Institut Chiari de Barcelona. Despr\u00e9s de llegir els testimonis publicats a la web i de parlar amb alguns pacients, va decidir enviar les proves i demanar una visita. Era el 23 de desembre del 2015 i els metges de l\u2019Institut Chiari li van explicar que si no feia res, la seva malaltia empitjoraria encara m\u00e9s. Aix\u00ed que va prendre la decisi\u00f3 d\u2019operar-se i el 12 de gener del 2016 es va sotmetre a la intervenci\u00f3 de la Secci\u00f3 del Filum Terminale. Ens explica que immediatament despr\u00e9s de la intervenci\u00f3, les millores van ser incre\u00efbles per alegria de tota la seva fam\u00edlia. Podia moure una altra vegada el bra\u00e7 dret i escriure. Algunes mol\u00e8sties encara queden, com les del cap o les descarregues el\u00e8ctriques, encara que \u00fanicament a la part dreta del cos. El bra\u00e7 el pot moure molt b\u00e9 i ara ha tornat a dibuixar i a cosir. Posteriorment, a It\u00e0lia, es va sotmetre a d\u2019altres intervencions bastant m\u00e9s complexes, per\u00f2 comenta que les millores obtingudes despr\u00e9s de la Secci\u00f3 del Filum Terminale persisteixen i n\u2019est\u00e0 molt satisfeta: \u201c<em>Estic molt feli\u00e7 dels resultats, tornaria a operar-me mil cops\u201d, <\/em>ens diu.<\/p>\n<p>La mare de la Ginevra ens explica el llarg i dif\u00edcil cam\u00ed al que tota la fam\u00edlia va haver de fer front, amb dolor per\u00f2 al final amb esperan\u00e7a, perqu\u00e8 quan van arribar a l\u2019Institut Chiari se\u2019ls va obrir un m\u00f3n nou cap a la recuperaci\u00f3. La senyora afegeix: \u201c<em>Si teniu algun dubte, envieu les vostres proves i els doctors us sabran respondre. Si us enfronteu a aquesta experi\u00e8ncia, feu-ho amb fe, perqu\u00e8 nosaltres, despr\u00e9s d\u2019un any i mig de la intervenci\u00f3, nom\u00e9s podem dir com de b\u00e9 ha anat\u201d.<\/em><\/p>\n<p>La Ginevra i la seva mare desitgen expressar, amb aquest v\u00eddeo, la seva gratitud al Dr. Royo, al Dr. Fiallos, al Dr. Salca, a la Gioia Lu\u00e8, a l\u2019Elena Vitturi i a tot l\u2019Institut Chiari perqu\u00e8, gr\u00e0cies a la seva tenacitat, la Ginevra s\u2019ha salvat.<\/p>\n<p>Ginevra: +39. 327.265.61.60<br \/>\nMare de la Ginevra: +39.324.798.79.42<\/p>\n<\/div>\n","protected":false},"featured_media":137875,"template":"","tipos-de-video":[585],"class_list":["post-111614","videos","type-videos","status-publish","has-post-thumbnail","hentry","tipos-de-video-videos-testimonis"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.1.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Ginevra Mari \u2013 Testimoni Chiari | 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