{"id":49768,"date":"2015-05-20T00:00:00","date_gmt":"2015-05-19T22:00:00","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/testimonios\/emanuele-belfiori-sindrome-de-traccio-medullar-descens-de-les-amigdales-cerebelloses-dac-discopatia-multiple\/"},"modified":"2026-03-18T11:03:16","modified_gmt":"2026-03-18T10:03:16","slug":"emanuele-belfiori-sindrome-traccio-medul%c2%b7lar-descens-amigdales-cerebel%c2%b7loses-dac-discopatia-multiple","status":"publish","type":"testimonios","link":"https:\/\/institutchiaribcn.com\/ca\/emanuele-belfiori-sindrome-traccio-medul%c2%b7lar-descens-amigdales-cerebel%c2%b7loses-dac-discopatia-multiple\/","title":{"rendered":"Emanuele Belfiori. S\u00edndrome de Tracci\u00f3 Medul\u00b7lar. Descens de les Am\u00edgdales Cerebel\u00b7loses (DAC). Discopatia m\u00faltiple"},"content":{"rendered":"<p>&nbsp;<\/p>\n<p style=\"text-align: justify;\"><strong><a href=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2016\/07\/Emanuele.jpg\"><img decoding=\"async\" class=\"img-rounded img-responsive text-wrap wp-image-7026 size-full alignright\" src=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2016\/07\/Emanuele.jpg\" sizes=\"(max-width: 200px) 100vw, 200px\" srcset=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2016\/07\/Emanuele.jpg 200w, https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2016\/07\/Emanuele-150x150.jpg 150w\" alt=\"Emanuele\" width=\"200\" height=\"200\" \/><\/a>Data de la intervenci\u00f3: Novembre del 2013<\/strong><\/p>\n<p style=\"text-align: justify;\">Hola a tots. Em dic Emanuele, tinc 35 anys i visc a Tur\u00ed.<\/p>\n<p style=\"text-align: justify;\">Qu\u00e8 puc dir? Des de nen vaig tenir molts daltabaixos tant a nivell psicol\u00f2gic com f\u00edsic; penseu que a la meva fam\u00edlia em deien \u201cVirus\u201d, perqu\u00e8 cada dia tenia un problema nou. Per sort, sempre he tingut una bona estructura f\u00edsica que ha compensat les nombroses faltes que m\u2019han afectat al llarg dels anys. La meva vida anava molt b\u00e9: portava ja 20 anys treballant com a lampista i des d\u2019en feia 7 havia complert el meu somni de tenir una activitat pr\u00f2pia, entrenava cada dia, regularment practicava arts marcials i vivia amb la meva mitja taronja. Quina vida m\u00e9s envejable.<\/p>\n<p style=\"text-align: justify;\">Un divendres de maig del 2013, fent un esfor\u00e7 a la feina, vaig comen\u00e7ar a tenir dolors intensos a la part lumbar de l\u2019esquena. Vaig creure que era una estrebada i no li vaig donar m\u00e9s import\u00e0ncia. Aleshores el dissabte vaig anar a classe i, en tornar a casa, a m\u00e9s del dolor a la part baixa de l\u2019esquena, es van afegir intensos dolors al coll i al cap. Aquests \u00faltims em van acompanyar les 24 hores del dia fins al dia de la intervenci\u00f3!. Vaig anar al metge de cap\u00e7alera amb la intensi\u00f3 d\u2019intentar arreglar de seguida la part lumbar i aix\u00ed poder seguir amb la meva feina i els meus entrenaments. El metge em va demanar la RMN lumbosacra i al juny vaig descobrir que hi tenia h\u00e8rnies.<\/p>\n<p style=\"text-align: justify;\">Com que el dolor al clatell seguia, tamb\u00e9 amb dolor punyent al cap, la meva parella va insistir en tornar a veure el metge per a demanar m\u00e9s proves per a les cefal\u00e0lgies constants (i rebels a qualsevol tipus de medicaci\u00f3). Dificultosament, vaig aconseguir la petici\u00f3 per a una RMN completa de crani i columna; em va costar molt aconseguir la RMN de l\u2019enc\u00e8fal ja que el meu metge no estava disposat a demanar-la.<\/p>\n<p style=\"text-align: justify;\">El 12 de juliol del 2013 em van diagnosticar d\u2019Arnold Chiari I amb descens de les am\u00edgdales cerebel\u00b7loses de 18 mm, discopaties m\u00faltiples, obstrucci\u00f3 de l\u2019ascens del l\u00edquid cefaloraquidi i dues lesions isqu\u00e8miques. Em vaig espantar de seguida: Qu\u00e8 era aquesta monstruosa malaltia?. Vaig comen\u00e7ar a buscar per Internet i vaig trobar la malaltia explicada de forma no massa clara, encara que tot el que llegia no era gens tranquil\u00b7litzador. Vaig seguir amb la meva recerca tant pel canal virtual com pel canal sanitari i malauradament vaig acabar demanant visites privades per tal d\u2019escur\u00e7ar els terminis d\u2019espera, ja que les llistes eren eternes. Mentrestant continuava empitjorant; vaig tenir molts s\u00edmptomes m\u00e9s o menys devastadors.<\/p>\n<p style=\"text-align: justify;\">Vull remarcar que saltar\u00e9 la part de l\u2019experi\u00e8ncia amb el sistema sanitari itali\u00e0, del calvari que vig haver de patir amb els metges que ni saben el que diuen ni el que fan, del per qu\u00e8 ning\u00fa estudia la nostra patologia per\u00f2 que pretenen saber-ne i van improvitzant ter\u00e0pies i tractaments quir\u00fargics, segons ells rutinaris i sense risc, que en canvi la majoria de les vegades provoquen \u00fanicament problemes, quan no \u00e9s que s\u2019arriba a conseq\u00fc\u00e8ncies grav\u00edssimes. Nom\u00e9s vull afegir que quan est\u00e0s fet pols, amargat, sol i aterrit pel dolor, ja no confies en el primer metge que fingeix que la teva malaltia sigui una cosa senzilla (perqu\u00e8 NO ho \u00e9s). Com en qualsevol altre ofici, tamb\u00e9 hi ha metges que no saben ni per on comen\u00e7ar a fer la seva feina. S\u2019ha d\u2019anar fins al fons, i veureu que podreu trobar una llum al final del t\u00fanel, amb persones que us acolliran amb els bra\u00e7os oberts, com m\u2019ha passat a mi. \u00danicament s\u2019ha de ser fort i tossut.<\/p>\n<p style=\"text-align: justify;\">Per sort, la meva cerca va acabar amb l\u2019Institut Chiari de Barcelona i amb la Rita i l\u2019Angelo. Vaig deixar el meu testimoni en un f\u00f2rum i vaig rebre la resposta de l\u2019Angelo qui em va donar el tel\u00e8fon de la Rita. Ella em va explicar la seva lluita contra la malaltia i em va descriure les seves millores. Gr\u00e0cies a la seva ajuda, la meva idea d\u2019anar a Barcelona es va fer encara m\u00e9s forta i, amb l\u2019ajuda de persones estimades, vaig estalviar els diners per a la intervenci\u00f3.<\/p>\n<p style=\"text-align: justify;\">Qu\u00e8 dir? Gr\u00e0cies a tot l\u2019equip de l\u2019Institut Chiari de Barcelona, a la Sra. Lu\u00e8, a la Dra. M\u00e9ndez, al Dr. Fiallos i a un llarg etc. Magn\u00edfics i pacients, i un GR\u00c0CIES al Dr. Miguel B. Royo Salvador, que m\u2019ha tornat l\u2019esperan\u00e7a i ha fet possible tornar a la vida que creia ja no tenir a les meves mans. Moltes gr\u00e0cies a la Jose, la meva mitja taronja, a la Rita, a l\u2019Angelo, a la Francesca i a molta altra gent que he conegut. Sense ells, hauria sigut dif\u00edcil, per\u00f2 la vida ens posa davant a les persones que necessitem, nom\u00e9s s\u2019ha d\u2019aixecar la mirada i saber-les recon\u00e8ixer.<\/p>\n<p style=\"text-align: justify;\">Ara, per a ajudar als altres que estan passant el mateix que vaig passar jo, formo part d\u2019una associaci\u00f3: AI.SAC.SI.SCO. Onlus, i s\u00f3c un referent a la meva regi\u00f3.<\/p>\n<p style=\"text-align: justify;\">En conclusi\u00f3, us animo resistir, perqu\u00e8 gr\u00e0cies a l\u2019esfor\u00e7 d\u2019un gran metge, cient\u00edfic i investigador com \u00e9s el Dr. Royo, tenim una segona oportunitat de tenir una vida digne.\u00a0 La malaltia ens acompanyar\u00e0 fins a la mort per\u00f2, com s\u2019acostuma a dir, no importa el que faci una persona, sin\u00f3 com ho faci.<\/p>\n<p style=\"text-align: justify;\">Tel.\u00a0 +39 333.7272061<\/p>\n<p>Correu electr\u00f2nic:\u00a0<a href=\"mailto:emanuele.belfiori@libero.it\">emanuele.belfiori@libero.it<\/a><\/p>\n","protected":false},"featured_media":43675,"template":"","tipos-de-testimonio":[320],"class_list":["post-49768","testimonios","type-testimonios","status-publish","has-post-thumbnail","hentry","tipos-de-testimonio-testimonis-sindrome-darnold-chiair-i"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.1.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Emanuele\u202fBelfiori: Chiari\u202fI i Disc\u00f2patie | ICSEB<\/title>\n<meta name=\"description\" content=\"Data de la intervenci\u00f3: Novembre del 2013 Hola a tots. 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