{"id":49761,"date":"2019-04-29T00:00:00","date_gmt":"2019-04-28T22:00:00","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/testimonios\/maria-rocio-lois-suarez-sindrome-neuro-cranio-vertebral-malaltia-del-filum-sindrome-darnold-chiari-i-discopatia-multiple\/"},"modified":"2026-03-19T10:25:43","modified_gmt":"2026-03-19T09:25:43","slug":"maria-rocio-arnold-chiari-discopatia-multiple","status":"publish","type":"testimonios","link":"https:\/\/institutchiaribcn.com\/ca\/maria-rocio-arnold-chiari-discopatia-multiple\/","title":{"rendered":"Maria Roc\u00edo Lois Su\u00e1rez. S\u00edndrome Neuro-Cranio-Vertebral, Malaltia del Filum, S\u00edndrome d\u2019Arnold Chiari I, Discopatia m\u00faltiple."},"content":{"rendered":"<p>&nbsp;<\/p>\n<p><a href=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2019\/04\/chiari-maria-suarez-icseb.jpg\"><img decoding=\"async\" class=\"img-rounded img-responsive text-wrap\" src=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2019\/04\/chiari-maria-suarez-icseb.jpg\" alt=\"\" width=\"200\" height=\"200\" \/><\/a><strong>Data d\u2019intervenci\u00f3: 22\/11\/2018<\/strong><\/p>\n<p><a href=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2015\/05\/esp.gif\"><img decoding=\"async\" class=\"alignnone size-full wp-image-1982\" src=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2015\/05\/esp.gif\" alt=\"\" width=\"20\" height=\"14\" \/><\/a><\/p>\n<p>En primer lloc, el meu m\u00e9s profund agra\u00efment a l\u2019equip m\u00e8dic encap\u00e7alat pel Dr. Marco V. Fiallos i les meves felicitacions al Dr. Royo Salvador en aquest 10\u00e8 aniversari de l\u2019Institut.<\/p>\n<p>Vull que el meu testimoni serveixi com a agra\u00efment a la seva labor i desvetllaments durant tants anys i com a mostra de la fiabilitat de la T\u00e8cnica del Filum System en la que tant ha treballat.<\/p>\n<p>Tamb\u00e9 vull fer-ho arribar als sectors, tan docents com a m\u00e8dics, per suscitar la reflexi\u00f3 i ressaltar la import\u00e0ncia de la formaci\u00f3 i perqu\u00e8 casos com el meu no caiguin en l\u2019ostracisme administratiu i social.<\/p>\n<p>Tamb\u00e9 m\u2019agradaria remoure les consci\u00e8ncies d\u2019alguns professionals de la medicina que exerceixen la seva labor d\u2019una forma impersonal, sense tenir en compte el sofriment de pacients que no tenen els mitjans necessaris per ser escoltats.<\/p>\n<p>Fins al maig de 2018, data en la qual vaig contactar amb l\u2019ICESB, ning\u00fa havia atribu\u00eft els meus problemes de salut, dispars i cada vegada de major intensitat, a l\u2019exist\u00e8ncia d\u2019una tracci\u00f3 medul\u00b7lar, ni sospitat de l\u2019exist\u00e8ncia d\u2019un Chiari tipus I, ni molt menys associat els meus s\u00edmptomes a una terrible malaltia: la <em>Siringomi\u00e8lia<\/em> (isqu\u00e8mia-edema centremedul\u00b7lar).<\/p>\n<p>Els meus records de petita s\u00f3n de dolors musculars, plantilles ortop\u00e8diques, infeccions de gola i bronquitis reiterades. A l\u2019adolesc\u00e8ncia i joventut, molt cansament f\u00edsic i mental per suportar els estudis i la vida pr\u00f2pia d\u2019aquesta edat.<\/p>\n<p>Va ser quan vaig comen\u00e7ar a treballar quan van comen\u00e7ar tamb\u00e9 les taquic\u00e0rdies, el dolor al pit, la sensaci\u00f3 d\u2019ofec, les infeccions de gola constants, posteriorment d\u2019o\u00efda, el vertigen. Tenia afonia al m\u00ednim esfor\u00e7 i sensaci\u00f3 de patir una grip cont\u00ednua.<\/p>\n<p>Els antibi\u00f2tics i els antiinflamatoris van convertir-se en els meus acompanyants habituals.<\/p>\n<p>Complerts els 30 anys van comen\u00e7ar els episodis espor\u00e0dics de dolor d\u2019espatlles i bra\u00e7os. Els dolors a les cames quan estava al llit que no em deixaven relaxar-me (alg\u00fa va opinar que patia <em>febre reumatoide,<\/em> encara que amb el temps el factor reum\u00e0tic es va comprovar negatiu). Aquests dolors van intensificar-se i van acabar sent cr\u00f2nics, provocant p\u00e8rdua de for\u00e7a a les mans, formigueig i insensibilitat.<\/p>\n<p>Em van diagnosticar s\u00edndrome del t\u00fanel carpi\u00e0 bilateral i despr\u00e9s de passar un curs gaireb\u00e9 complet treballant i sense dormir, em van suggerir operar-me.<\/p>\n<p>Tamb\u00e9 decideixo operar-me de la gola per les infeccions, ja que solament milloraven temporalment amb tractaments de penicil\u00b7lina.<\/p>\n<p>Entrada la d\u00e8cada dels 40 anys, s\u2019intensifiquen els dolors musculars, la rigidesa i el cansament habitual (estr\u00e8s?). Potser haig de relaxar-me i delegar responsabilitats. Per\u00f2 aix\u00f2 no li passa als de la meva edat.<\/p>\n<p>Les cervicalgies i torticolis s\u00f3n freq\u00fcents, les artr\u00e0lgies fan la seva aparici\u00f3. Episodis de taquic\u00e0rdies que porten a un estudi m\u00e9s seri\u00f3s del cor i a un tractament amb bisoprolol.<\/p>\n<p>Avan\u00e7ada la d\u00e8cada se\u2019m parla de possible fibromi\u00e0lgia. Vaig al reumat\u00f2leg i a partir d\u2019una anal\u00edtica em diagnostica polimi\u00e0lgia i recomana tractament amb corticoides i relaxants musculars. Al principi remeten els dolors, per\u00f2 passat un temps ressorgeixen amb major intensitat. Comen\u00e7a a fer-se notori l\u2019insomni i amb ell m\u00e9s vertigen i baixades de defenses.<\/p>\n<p>Ja en la 50a d\u00e8cada, a m\u00e9s dels s\u00edmptomes propis de la menopausa, perduren els vert\u00edgens, els dolors en extremitats superiors i inferiors, a la graella intercostal, als genolls, impossibilitant la baixada d\u2019escales i agenollar-me. Per\u00edodes de lumboci\u00e0tica.<\/p>\n<p>A la RNM s\u2019aprecien discopaties en lumbars, cervicals i en els dos \u00faltims anys tamb\u00e9 en dorsals.<\/p>\n<p>Diagn\u00f2stic de la s\u00edndrome miotensiu cervical. La p\u00e8rdua del to en la veu es fa habitual, les dificultats per empassar en situaci\u00f3 de cansament, la p\u00e8rdua d\u2019equilibri i la situaci\u00f3 d\u2019inestabilitat.<\/p>\n<p>El 2016 pateixo un accident laboral en el qual caic per les escales i em fracturo el canell esquerre. Em dono un cop a la part baixa de l\u2019esquena. Comen\u00e7a el calvari d\u2019un dolor constant i punyent sense remissi\u00f3.<\/p>\n<p>A reumatologia em diagnostiquen un gran \u201catrapament\u201d nervi\u00f3s a nivell lumbar, encara que l\u2019Administraci\u00f3 ho va considerar un proc\u00e9s degeneratiu.<\/p>\n<p>A traumatologia em recomanen la prova de la densitat \u00f2ssia, amb resultat d\u2019osteoporosi -3.<\/p>\n<p>S\u2019intenta tractament amb bifosfonats i el resultat \u00e9s d\u2019extrema rigidesa de la columna i impossibilitat per moure\u2019m (que afecta principalment a les extremitats esquerres). Es recomana gammagrafia (encara no s\u00e9 b\u00e9 perqu\u00e8). Despr\u00e9s d\u2019un per\u00edode de recuperaci\u00f3, em recomanen tractament per l\u2019artrosi i l\u2019artritis. Recorro a les infiltracions d\u2019oz\u00f3, sense resultats. Les seq\u00fceles del dolor neurop\u00e0tic a la cama esquerra i als peus continuen i tamb\u00e9 el dolor lumbar.<\/p>\n<p>Entre els anys 2017 i 2018 van comen\u00e7ar les tremolors i la sensaci\u00f3 de boca salada, sempre acompanyades de l\u2019insuportable dolor en l\u2019extrem inferior de la columna.<\/p>\n<p>La sensaci\u00f3 de tenir cada dia m\u00e9s torta la mand\u00edbula (com desencaixada), les neur\u00e0lgies, les punxades als ulls, l\u2019ennuegament i la p\u00e8rdua de veu sobtada.<\/p>\n<p>En neurologia s\u2019interpreta com pin\u00e7ament cervical i s\u2019aconsella fisioter\u00e0pia. La resposta \u00e9s molt dolenta a les 4 sessions, perdent la for\u00e7a a les cames.<\/p>\n<p>Sorgeix la baixada de defenses, infecci\u00f3 d\u2019orina, seguida d\u2019herpes z\u00f2ster als bra\u00e7os. Tractament amb antiv\u00edrics i anticonvulsionants. Dolor en defecar i restrenyiment extrem. Hipert\u00e8rmia, arribant a 32\u00ba C.<\/p>\n<p>\u00c9s arribat a aquest punt quan nom\u00e9s em queden dues opcions: demanar a D\u00e9u que em porti amb ell o buscar alguna forma de curar-me.<\/p>\n<p>Comen\u00e7o a indagar per internet i a associar s\u00edmptomes. Per casualitat trobo un v\u00eddeo a You-Tube sobre el Chiari. Em sona a alguna cosa familiar. Descobreixo la p\u00e0gina de l\u2019ICSEB i la informaci\u00f3 que aporta em porta a pensar que a Barcelona em poden ajudar. Sol\u00b7licito una cita al maig de 2018.<\/p>\n<p>A partir d\u2019una RNM, l\u2019equip m\u00e8dic m\u2019informa que a m\u00e9s de les m\u00faltiples discopaties, pateixo un DAC i la <strong>Malaltia del Filum<\/strong>, generada per una tracci\u00f3 medul\u00b7lar ocasionada per un <em>filum terminale <\/em>excessivament tens.<\/p>\n<p>En assabentar-me d\u2019aix\u00f2 sento una barreja de pena i r\u00e0bia. Com he arribat fins a aqu\u00ed?<\/p>\n<p>Intento buscar els mitjans materials i sol\u00b7licito la intervenci\u00f3 per al novembre passat.<\/p>\n<p>Tot va acabar tal com l\u2019equip m\u00e8dic m\u2019ho havia descrit, encara que les meves expectatives al principi estaven molt per sota d\u2019aquesta evoluci\u00f3.<\/p>\n<p>El fet de sortir caminant i poder fer front a un viatge de 1000 km em va donar molta seguretat. Durant el viatge vaig notar una nitidesa visual a la qual ja no estava acostumada.<\/p>\n<p>Han estat 3 mesos en els quals encara he tingut dolor (sobretot lumbar), per\u00f2 diferent al que tenia abans (punyent). Aquell punyal, metaf\u00f2ricament parlant, que tenia clavat entre les natges va desapar\u00e8ixer. Els dolors en els peus, es van atenuar i nom\u00e9s apareixen en moments de cansament.<\/p>\n<p>Estan desapareixent la rigidesa i la falta de flexibilitat. La funci\u00f3 intestinal s\u2019ha regularitzat.<\/p>\n<p>L\u2019\u00fanica cosa negativa \u00e9s una sensaci\u00f3 de nerviosisme (en la qual poden repercutir motius d\u2019\u00edndole personal i laboral) i la falta d\u2019estabilitat a la vista (que percebo com a canviant en diferents moments del dia). Espero que en activar-se en major grau la circulaci\u00f3 cerebral, tots dos acabin per desapar\u00e8ixer.<\/p>\n<p>Correu electr\u00f2nic:\u00a0<a href=\"mailto:rolosu@edu.xunta.es\">rolosu@edu.xunta.es<\/a><br \/>\nM\u00f2bil: +34 622104746<\/p>\n","protected":false},"featured_media":43570,"template":"","tipos-de-testimonio":[320],"class_list":["post-49761","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>Maria Roc\u00edo Lois Su\u00e1rez: Chiari I i discopatia | ICSEB<\/title>\n<meta name=\"description\" content=\"Data d\u2019intervenci\u00f3: 22\/11\/2018 En primer lloc, el meu m\u00e9s profund agra\u00efment a l\u2019equip m\u00e8dic encap\u00e7alat pel Dr. Marco V.... \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\" href=\"https:\/\/institutchiaribcn.com\/ca\/maria-rocio-arnold-chiari-discopatia-multiple\/\" \/>\n<meta property=\"og:locale\" content=\"ca_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Maria Roc\u00edo Lois Su\u00e1rez: Chiari I i discopatia | ICSEB\" \/>\n<meta property=\"og:description\" content=\"Data d\u2019intervenci\u00f3: 22\/11\/2018 En primer lloc, el meu m\u00e9s profund agra\u00efment a l\u2019equip m\u00e8dic encap\u00e7alat pel Dr. Marco V.... \u00a0 Llegir m\u00e9s \u2192\" \/>\n<meta property=\"og:url\" content=\"https:\/\/institutchiaribcn.com\/ca\/maria-rocio-arnold-chiari-discopatia-multiple\/\" \/>\n<meta property=\"og:site_name\" content=\"Institut Chiari\" \/>\n<meta property=\"article:modified_time\" content=\"2026-03-19T09:25:43+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/07\/chiari-maria-suarez-icseb.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"200\" \/>\n\t<meta property=\"og:image:height\" content=\"200\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Temps estimat de lectura\" \/>\n\t<meta name=\"twitter:data1\" content=\"6 minuts\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/institutchiaribcn.com\/ca\/maria-rocio-arnold-chiari-discopatia-multiple\/\",\"url\":\"https:\/\/institutchiaribcn.com\/ca\/maria-rocio-arnold-chiari-discopatia-multiple\/\",\"name\":\"Maria Roc\u00edo Lois Su\u00e1rez: Chiari I i discopatia | ICSEB\",\"isPartOf\":{\"@id\":\"https:\/\/institutchiaribcn.com\/ca\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/institutchiaribcn.com\/ca\/maria-rocio-arnold-chiari-discopatia-multiple\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/institutchiaribcn.com\/ca\/maria-rocio-arnold-chiari-discopatia-multiple\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/07\/chiari-maria-suarez-icseb.jpg\",\"datePublished\":\"2019-04-28T22:00:00+00:00\",\"dateModified\":\"2026-03-19T09:25:43+00:00\",\"description\":\"Data d\u2019intervenci\u00f3: 22\/11\/2018 En primer lloc, el meu m\u00e9s profund agra\u00efment a l\u2019equip m\u00e8dic encap\u00e7alat pel Dr. Marco V.... \u00a0 Llegir m\u00e9s \u2192\",\"breadcrumb\":{\"@id\":\"https:\/\/institutchiaribcn.com\/ca\/maria-rocio-arnold-chiari-discopatia-multiple\/#breadcrumb\"},\"inLanguage\":\"ca\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/institutchiaribcn.com\/ca\/maria-rocio-arnold-chiari-discopatia-multiple\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"ca\",\"@id\":\"https:\/\/institutchiaribcn.com\/ca\/maria-rocio-arnold-chiari-discopatia-multiple\/#primaryimage\",\"url\":\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/07\/chiari-maria-suarez-icseb.jpg\",\"contentUrl\":\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2025\/07\/chiari-maria-suarez-icseb.jpg\",\"width\":200,\"height\":200},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/institutchiaribcn.com\/ca\/maria-rocio-arnold-chiari-discopatia-multiple\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Portada\",\"item\":\"https:\/\/institutchiaribcn.com\/ca\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Testimonios\",\"item\":\"https:\/\/institutchiaribcn.com\/ca\/testimonios\/\"},{\"@type\":\"ListItem\",\"position\":3,\"name\":\"Maria Roc\u00edo Lois Su\u00e1rez. 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