{"id":65426,"date":"2019-04-29T00:00:00","date_gmt":"2019-04-28T22:00:00","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/testimonios\/%e7%91%aa%e9%ba%97%e8%98%bf%e5%b8%8c%e6%ad%90maria-rocio-lois-suarez%ef%bc%8c%e5%b0%8f%e8%85%a6%e6%89%81%e6%a1%83%e9%ab%94%e4%b8%8b%e7%96%9d%e7%ac%ac%e4%b8%80%e5%9e%8b%e4%bd%b5%e8%a4%87%e5%90%88\/"},"modified":"2026-04-13T13:43:07","modified_gmt":"2026-04-13T11:43:07","slug":"%e7%91%aa%e9%ba%97%e8%98%bf%e5%b8%8c%e6%ad%90maria-%e5%b0%8f%e8%85%a6%e6%89%81%e6%a1%83%e9%ab%94%e4%b8%8b%e7%96%9d%e7%ac%ac%e4%b8%80%e5%9e%8b%e4%bd%b5%e6%a4%8e%e9%96%93%e7%9b%a4%e7%aa%81%e5%87%ba","status":"publish","type":"testimonios","link":"https:\/\/institutchiaribcn.com\/tw\/%e7%91%aa%e9%ba%97%e8%98%bf%e5%b8%8c%e6%ad%90maria-%e5%b0%8f%e8%85%a6%e6%89%81%e6%a1%83%e9%ab%94%e4%b8%8b%e7%96%9d%e7%ac%ac%e4%b8%80%e5%9e%8b%e4%bd%b5%e6%a4%8e%e9%96%93%e7%9b%a4%e7%aa%81%e5%87%ba\/","title":{"rendered":"\u746a\u9e97\u863f\u5e0c\u6b50(Maria Roc\u00edo Lois Su\u00e1rez)\uff0c\u5c0f\u8166\u6241\u6843\u9ad4\u4e0b\u759d\u7b2c\u4e00\u578b\u4f75\u8907\u5408\u6027\u690e\u9593\u76e4\u7a81\u51fa\u3002"},"content":{"rendered":"

 <\/p>\n

Fecha de la cirug\u00eda: 22 de noviembre de 2018.<\/span><\/span><\/strong><\/p>\n

\"\"<\/a>Espa\u00f1ol<\/span><\/span>
\n<\/span><\/p>\n

Hola a todos, en primer lugar quisiera expresar mi m\u00e1s profundo agradecimiento al Dr. Fei del instituto y felicitar al Dr. Luo You, fundador del instituto, por el d\u00e9cimo aniversario de su creaci\u00f3n.<\/span><\/span><\/p>\n

Espero que mi historia personal sirva para expresar mi gratitud a los m\u00e9dicos por sus a\u00f1os de dedicaci\u00f3n a la investigaci\u00f3n y el desarrollo del sistema de la fimbria terminal. Asimismo, espero que mi historia se comparta con otros profesores y m\u00e9dicos, impuls\u00e1ndolos a reflexionar y profundizar su comprensi\u00f3n y formaci\u00f3n sobre pacientes con mi enfermedad. Espero que los m\u00e9dicos que tratan enfermedades como la nuestra sean m\u00e1s objetivos y atentos al sufrimiento que padecemos.<\/span><\/span><\/p>\n

Hasta que contact\u00e9 con el Instituto Chiari de Barcelona en mayo de 2018, ning\u00fan m\u00e9dico prest\u00f3 atenci\u00f3n a mis problemas de salud. Mis s\u00edntomas empeoraban cada vez m\u00e1s, y ning\u00fan m\u00e9dico sospechaba que tuviera un problema de m\u00e9dula espinal, \u00a1y mucho menos que tuviera una herniaci\u00f3n amigdalina cerebelosa tipo 1 y la terrible siringomielia!<\/span><\/span><\/p>\n

Mis recuerdos de infancia est\u00e1n plagados de dolores musculares, el uso de plantillas ortop\u00e9dicas y faringitis y bronquitis recurrentes. Durante la pubertad y la adolescencia, la intensa carga de trabajo y las exigencias de esa edad me agotaron por completo, tanto f\u00edsica como mentalmente. M\u00e1s tarde, al empezar a trabajar, comenc\u00e9 a experimentar taquicardia, dolor en el pecho, sensaci\u00f3n de asfixia, frecuentes dolores de garganta e infecciones de o\u00eddo, y mareos. Incluso el m\u00e1s m\u00ednimo esfuerzo me hac\u00eda perder la voz, y sent\u00eda que me resfriaba constantemente. Por ello, los antibi\u00f3ticos y los antiinflamatorios se convirtieron en mi medicaci\u00f3n habitual.<\/span><\/span><\/p>\n

A partir de los 30 a\u00f1os, comenc\u00e9 a experimentar dolor ocasional en el hombro y el brazo. Adem\u00e1s, el dolor en las piernas me imped\u00eda descansar adecuadamente, incluso en la cama (algunos sugirieron fiebre reumatoide, pero el tiempo demostr\u00f3 que no la ten\u00eda). Este dolor era bastante intenso y posteriormente se volvi\u00f3 cr\u00f3nico, provoc\u00e1ndome debilidad, hormigueo y entumecimiento en las manos. Me diagnosticaron s\u00edndrome del t\u00fanel carpiano bilateral y los m\u00e9dicos recomendaron cirug\u00eda. Finalmente, decid\u00ed operarme tambi\u00e9n de la garganta, ya que la inflamaci\u00f3n era muy frecuente y los m\u00e9dicos solo la trataban temporalmente con penicilina.<\/span><\/span><\/p>\n

A los 40 a\u00f1os, el dolor muscular, la rigidez y la fatiga empeoraron. \u00bfSer\u00e1 por el estr\u00e9s? Quiz\u00e1s deber\u00eda haber dejado de lado algunas responsabilidades, pero estos problemas no suelen ocurrir a mi edad. Con frecuencia ten\u00eda dolor de cuello y tort\u00edcolis, aparecieron dolores articulares y mi taquicardia empeor\u00f3, as\u00ed que empec\u00e9 a tomar bisoprolol. A los 40 a\u00f1os, me dijeron que podr\u00eda tener fibromialgia, as\u00ed que consult\u00e9 con un reumat\u00f3logo. Tras varias pruebas, me diagnostic\u00f3 polimialgia y me recomend\u00f3 corticosteroides y relajantes musculares. Al principio, el dolor disminuy\u00f3, pero al cabo de un tiempo volvi\u00f3 y se intensific\u00f3. Empec\u00e9 a sufrir insomnio severo acompa\u00f1ado de mareos y mi sistema inmunitario se debilit\u00f3.<\/span><\/span><\/p>\n

Al cumplir 50 a\u00f1os, adem\u00e1s de los s\u00edntomas de la menopausia, mareos, dolor en las extremidades, dolor en las costillas y las rodillas, y dificultad para bajar escaleras y arrodillarme, tambi\u00e9n desarroll\u00e9 dolor lumbar. Una resonancia magn\u00e9tica revel\u00f3 una hernia discal lumbar, as\u00ed como hernias discales en la columna cervical y tor\u00e1cica. Tambi\u00e9n me diagnosticaron miastenia gravis cervical. Tengo la voz d\u00e9bil, a veces tengo dificultad para tragar cuando estoy cansada y mi equilibrio ha empeorado considerablemente.<\/span><\/span><\/p>\n

En 2016, me ca\u00ed por las escaleras en el trabajo, fractur\u00e1ndome la mu\u00f1eca izquierda y golpe\u00e1ndome tambi\u00e9n la parte baja de la espalda. Desde entonces, sufro de un dolor agudo y persistente. Consult\u00e9 con un reumat\u00f3logo que pens\u00f3 que ten\u00eda compresi\u00f3n nerviosa en la parte baja de la espalda, pero otros m\u00e9dicos opinaron que se trataba simplemente de un problema degenerativo. En el departamento de ortopedia, me recomendaron una densitometr\u00eda \u00f3sea, que revel\u00f3 osteoporosis. Los m\u00e9dicos probaron con bisfosfonatos, pero esto me provoc\u00f3 una rigidez severa en la columna y me dej\u00f3 el brazo izquierdo inm\u00f3vil. Posteriormente, me sugirieron una gammagraf\u00eda (no s\u00e9 exactamente por qu\u00e9). Tiempo despu\u00e9s, los m\u00e9dicos me recomendaron un tratamiento para la artritis y me somet\u00ed a ozonoterapia, pero no tuvo ning\u00fan efecto. El dolor nervioso en la pierna y los pies izquierdos, as\u00ed como el dolor en la parte baja de la espalda, persisten.<\/span><\/span><\/p>\n

Entre 2017 y 2018, comenc\u00e9 a experimentar temblores y un sabor salado en la boca, junto con un dolor insoportable en la parte baja de la columna. Cada d\u00eda sent\u00eda que mi mand\u00edbula se torc\u00eda cada vez m\u00e1s (una sensaci\u00f3n de que mis mejillas no pod\u00edan cerrarse correctamente), y ten\u00eda dolor en los nervios, escozor en los ojos, sensaci\u00f3n de asfixia y p\u00e9rdida repentina de la voz.<\/span><\/span><\/p>\n

Consult\u00e9 con un neur\u00f3logo, quien me diagnostic\u00f3 un problema en la columna cervical y me recomend\u00f3 fisioterapia. Sin embargo, tras cuatro sesiones de tratamiento, la fuerza en mis piernas sigui\u00f3 disminuyendo. Posteriormente, desarroll\u00e9 un sistema inmunitario debilitado, infecciones del tracto urinario e incluso herpes z\u00f3ster en los brazos (recib\u00ed medicamentos antivirales y anticonvulsivos). Tambi\u00e9n sufr\u00eda de estre\u00f1imiento severo y deposiciones dolorosas. Mis problemas de salud se agravaron tanto que solo ten\u00eda dos opciones: rogarle a Dios que me llevara o pedirle que encontrara una cura.<\/span><\/span><\/p>\n

M\u00e1s tarde, comenc\u00e9 a buscar informaci\u00f3n en l\u00ednea sobre mis s\u00edntomas. Casualmente, encontr\u00e9 un video en YouTube sobre la herniaci\u00f3n de las am\u00edgdalas cerebelosas, lo que me llev\u00f3 al sitio web del Instituto de Barcelona. Tras revisar detenidamente su sitio web, comenc\u00e9 a considerar seriamente la posibilidad de que los m\u00e9dicos de Barcelona pudieran ayudarme. Finalmente, program\u00e9 una cita para mayo de 2018. <\/span><\/span>
\nDespu\u00e9s de revisar mis resonancias magn\u00e9ticas, el equipo m\u00e9dico del Instituto de Barcelona me inform\u00f3 que, adem\u00e1s de una hernia discal, tambi\u00e9n ten\u00eda herniaci\u00f3n de las am\u00edgdalas cerebelosas y un trastorno del filum terminal, ambos causados \u200b\u200bpor anomal\u00edas en el filum terminal que ejercen presi\u00f3n sobre la m\u00e9dula espinal. Al escuchar las palabras del m\u00e9dico, sent\u00ed una mezcla de tristeza e ira. \u00bfC\u00f3mo hab\u00eda llegado a esta situaci\u00f3n? Comenc\u00e9 a recaudar fondos y finalmente program\u00e9 la cirug\u00eda para noviembre de 2018.<\/span><\/span><\/p>\n

La situaci\u00f3n postoperatoria fue similar a la que me hab\u00eda explicado el m\u00e9dico. Aunque pensaba que no habr\u00eda cambios tras la cirug\u00eda, pude salir del hospital caminando por mi cuenta y, posteriormente, incluso conduje 1000 kil\u00f3metros. Adem\u00e1s, mi visi\u00f3n fue muy n\u00edtida durante el viaje, algo que nunca me hab\u00eda sucedido, ya que siempre hab\u00eda tenido problemas de visi\u00f3n borrosa.<\/span><\/span><\/p>\n

Han pasado tres meses desde la cirug\u00eda y a\u00fan siento dolor, pero ya no es ese dolor agudo y punzante que sent\u00eda antes, como si me clavaran un clavo en las nalgas. El dolor de pies solo aparece cuando estoy cansada. La rigidez tambi\u00e9n est\u00e1 mejorando gradualmente y mi sistema digestivo est\u00e1 volviendo a la normalidad. Actualmente, lo \u00fanico que me sigue molestando es la sensaci\u00f3n de tensi\u00f3n (que puede estar relacionada con el trabajo o con factores personales) y la visi\u00f3n inestable (a veces veo con claridad, a veces est\u00e1 borrosa durante el d\u00eda). Espero que mi circulaci\u00f3n cerebral se recupere lo m\u00e1ximo posible para que estos dos problemas desaparezcan gradualmente.<\/span><\/span><\/p>\n

Mi correo electr\u00f3nico:\u00a0 <\/span><\/span>rolusu@edu.xunta.es<\/span><\/span><\/a>
\n M\u00f3vil: +34 622104746<\/span><\/span><\/p>\n","protected":false},"featured_media":65427,"template":"","tipos-de-testimonio":[420,421],"class_list":["post-65426","testimonios","type-testimonios","status-publish","has-post-thumbnail","hentry","tipos-de-testimonio-420","tipos-de-testimonio-421"],"yoast_head":"\n\u746a\u9e97\u863f\u5e0c\u6b50 Maria\u202fChiari\u202fI \u578b\u624b\u8853\u7d93\u9a57 | ICSEB<\/title>\n<meta name=\"description\" content=\"\u8aaa\u660eMaria\u60a3\u8005\u7684Chiari I\u578b\u5c0f\u8166\u6241\u6843\u9ad4\u4e0b\u759d\u53ca\u690e\u9593\u76e4\u7a81\u51fa\u8a3a\u65b7\u8207\u6cbb\u7642\u904e\u7a0b\uff0c\u4ee5\u53ca\u8853\u5f8c\u6062\u5fa9\u60c5\u6cc1\u3002\" \/>\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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