{"id":111578,"date":"2021-02-05T00:00:11","date_gmt":"2021-02-04T23:00:11","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/videos\/sacha-ingles-gomes-dos-santos-sindrome-neuro-cranio-vertebral-malaltia-del-filum-sindrome-darnold-chiari-i-siringomielia-i-escoliosi-idiopatiques-i-discopaties-multiples\/"},"modified":"2026-04-02T10:47:20","modified_gmt":"2026-04-02T08:47:20","slug":"sacha-ingles-gomes-dos-santos-sindrome-neuro-cranio-vertebral-malaltia-filum-sindrome-darnold-chiari-siringomielia-escoliosi-idiopatiques-discopaties-multiples","status":"publish","type":"videos","link":"https:\/\/institutchiaribcn.com\/ca\/sacha-ingles-gomes-dos-santos-sindrome-neuro-cranio-vertebral-malaltia-filum-sindrome-darnold-chiari-siringomielia-escoliosi-idiopatiques-discopaties-multiples\/","title":{"rendered":"Sacha Ingl\u00e9s Gomes dos Santos \u2013 S\u00edndrome Neuro-Cranio-Vertebral, Malaltia del Filum, S\u00edndrome d\u2019Arnold Chiari I, Siringomi\u00e8lia i Escoliosi idiop\u00e0tiques i Discopaties M\u00faltiples"},"content":{"rendered":"<div class=\"panel panel-default panel-body\">\n<p>&nbsp;<\/p>\n<div class=\"embed-responsive embed-responsive-16by9\"><\/div>\n<p>Link: <a href=\"https:\/\/www.youtube.com\/embed\/OeF3SkjIYYw\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.youtube.com\/embed\/OeF3SkjIYYw<\/a><\/p>\n<p><strong>Data de la intervenci\u00f3: 04\/06\/2019<\/strong><br \/>\n<strong>Data de la gravaci\u00f3: 14\/06\/2019<\/strong><\/p>\n<p><img decoding=\"async\" class=\"flag\" src=\"https:\/\/institutchiaribcn.com\/commons\/img\/flags\/pt.jpg\" alt=\"\" \/><\/p>\n<p style=\"text-align: justify;\">Aquesta fam\u00edlia d\u2019Angola ens explica la seva hist\u00f2ria en aquest v\u00eddeo testimoni. El Sr. H\u00e9lio Santos i la Sra. Neide Gomes tenen tres fills. La Sacha, d\u2019onze anys, \u00e9s la mitjana i va ser diagnosticada de la S\u00edndrome d\u2019Arnold Chiari I quan en tenia dos. Diuen que al principi poc sabien de la malaltia i que els va costar entendre-la. El cas de la Sacha va ser tractat per un grup de metges de Portugal que els va indicar practicar-li una craniotomia suboccipital m\u00e9s endavant. Aix\u00ed i tot, amb el pas del temps, els pares van notar que els s\u00edmptomes de la nena anaven m\u00e9s enll\u00e0 i que, en els \u00faltims dos anys, la nena havia tingut un empitjorament important.<\/p>\n<p style=\"text-align: justify;\">La Sacha ja no podia dormir i a l\u2019escola no podia concentrar-se. \u201cElla es quedava 30 minuts a l\u2019escola i ens trucaven per anar-la a buscar\u201d, explica el pare. La situaci\u00f3 a l\u2019escola va empitjorar encara m\u00e9s perqu\u00e8 els nens la insultaven dient-li que era una malalta i va ser quan la Sacha va comen\u00e7ar a patir bullying.<\/p>\n<p style=\"text-align: justify;\">\u201cEra cada vegada m\u00e9s dif\u00edcil. Vivim a Angola, on fa molta calor i era dif\u00edcil per a ella poder jugar i sentir-se animada. Els \u00faltims anys van ser horribles; va deixar d\u2019interactuar amb les persones a causa del malestar que sentia\u201d, diu el pare. La Sacha tenia n\u00e0usees, cefalees, problemes de vista tals com amaurosi fuga\u00e7 i escotomes centellejants. M\u00e9s recentment, va comen\u00e7ar a tenir episodis de desmais. Per tot aix\u00f2, la mare va comen\u00e7ar a investigar per Internet i va trobar l\u2019ICSEB. \u201cVaig veure que era un institut que ha estat treballant en aquesta malaltia des de fa m\u00e9s de 40 anys i, com a mare, vaig sentir que era un treball seri\u00f3s\u201d.<\/p>\n<p style=\"text-align: justify;\">Deu dies despr\u00e9s de la intervenci\u00f3 de la Sacha, la Sra. Gomes diu que la seva filla es troba molt b\u00e9 i que els canvis s\u00f3n notables. \u201cAra dorm durant tota la nit, cosa que \u00e9s incre\u00efble.\u201d Diu que a m\u00e9s a m\u00e9s la nena ja no pateix dolors ni a les cames ni als bra\u00e7os i que ha recuperat la for\u00e7a a les mans. \u201cEstem molt contents i molt agra\u00efts als metges, a la Marta, que va ser molt atenta, i a l\u2019Institut. Hav\u00edem de deixar el nostre testimoni\u201d, diu la mare.<\/p>\n<p style=\"text-align: justify;\">Per la seva banda, el pare explica que al principi va dubtar una mica de portar la seva filla a tractar-se a l\u2019ICSEB. \u201cHem decidit parlar perqu\u00e8 en realitat jo, com a pare, s\u00f3c una mica m\u00e9s aprensiu i quan em vaig trobar a la Neide amb tota la informaci\u00f3 d\u2019internet, vaig tenir els meus dubtes. El que em va conv\u00e8ncer m\u00e9s va ser el fet d\u2019haver rebut una resposta tan r\u00e0pida en portugu\u00e8s, i tamb\u00e9 haver pogut llegir els comentaris i veure a diferents persones, veure d\u2019on venien. Tot aix\u00f2 ens va donar forces per venir aqu\u00ed.\u201d<\/p>\n<p style=\"text-align: justify;\">Al final del v\u00eddeo, la mare li pregunta a la Sacha si ella havia notat canvis i la nena va contestar que s\u00ed, que la seva situaci\u00f3 havia canviat molt. \u201c T\u2019agradaria tornar al passat?\u201d li pregunta la mare, i la Sacha contesta r\u00e0pidament que no. Est\u00e0s contenta? I la Sacha respon: \u201cEstic molt contenta.\u201d<\/p>\n<p>Correu electr\u00f2nic:\u00a0<a href=\"mailto:neidegomes@live.com.pt\">neidegomes@live.com.pt<\/a><\/p>\n<ol>\n<li>(*) Royo-Salvador, M.B., Fiallos-Rivera, M.V., Salca, H.C. et al. The Filum disease and the Neuro-Cranio-vertebral syndrome: definition, clinical picture and imaging features. BMC Neurol 20, 175 (2020). <a href=\"https:\/\/doi.org\/10.1186\/s12883-020-01743-y\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/doi.org\/10.1186\/s12883-020-01743-y<\/a> , <a href=\"https:\/\/rdcu.be\/b36Pi\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/rdcu.be\/b36Pi<\/a><\/li>\n<\/ol>\n<\/div>\n","protected":false},"featured_media":137377,"template":"","tipos-de-video":[585],"class_list":["post-111578","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>S\u00edndrome de Chiari i escoliosi | Institut Chiari Barcelona<\/title>\n<meta name=\"description\" content=\"Testimoni de Sacha Ingl\u00e9s Gomes dos Santos amb SNCV, Chiari, siringomi\u00e8lia i escoliosi despr\u00e9s del tractament amb Filum.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, 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