{"id":49959,"date":"2010-05-01T00:00:00","date_gmt":"2010-04-30T22:00:00","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/testimonios\/rosanna-biagiotti-sindrome-de-traccio-medul-lar-siringomielia-i-escoliosi-idiopatiques-discopatia-d8-d9-e-d9-d10\/"},"modified":"2026-01-20T10:34:55","modified_gmt":"2026-01-20T09:34:55","slug":"rosanna-biagiotti-sindrome-da-trazione-midollare-siringomielia-e-scoliosi-idiopatiche-discopatie-d8-d9-e-d9-d10","status":"publish","type":"testimonios","link":"https:\/\/institutchiaribcn.com\/ca\/rosanna-biagiotti-sindrome-da-trazione-midollare-siringomielia-e-scoliosi-idiopatiche-discopatie-d8-d9-e-d9-d10\/","title":{"rendered":"Rosanna Biagiotti. Sindrome de tracci\u00f3 medul.lar. Siringomielia i Escoliosi idiopatiques. Discopat\u00eda D8-D9 e D9-D10"},"content":{"rendered":"<p>&nbsp;<\/p>\n<p style=\"text-align: justify;\"><img decoding=\"async\" class=\"text-wrap alignnone size-full wp-image-2265\" src=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2015\/05\/rosanna_biagiotti.jpg\" sizes=\"(max-width: 200px) 100vw, 200px\" srcset=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2015\/05\/rosanna_biagiotti.jpg 200w, https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2015\/05\/rosanna_biagiotti-150x150.jpg 150w\" alt=\"rosanna_biagiotti\" width=\"200\" height=\"200\" \/><br \/>\n<strong>Data d\u2019intervenci\u00f3: maig 2010<\/strong><\/p>\n<p style=\"text-align: justify;\">Bon dia a tothom. El meu nom \u00e9s Rosanna Biagiotti, tinc 35 anys i visc a \u00dambria, precisament a la prov\u00edncia de Perusa. Volia explicar breument la meva hist\u00f2ria, esperant d\u2019aquesta forma poder ser d\u2019ajuda a tots aquells que, com jo, han tingut la mala sort de tenir una malaltia rara i que no han trobat al seu pa\u00eds les respostes degudes. Tot va comen\u00e7ar l\u2019Agost 2009, quan van iniciar els primers rars s\u00edmptomes de cansament i debilitat de la musculatura del coll, amb moviments involuntaris de rotaci\u00f3 del cap a l\u2019esquerra.<\/p>\n<p style=\"text-align: justify;\">Des d\u2019aqu\u00ed van comen\u00e7ar les primeres recerques, a l\u2019inici mitjan\u00e7ant simples proves de rutina, com a RX cranial i de columna cervical per petici\u00f3 del metge de cap\u00e7alera, per\u00f2 d\u2019aquestes no va resultar cap anomalia. Va passar d\u2019aquesta manera un altre per\u00edode de temps, en el qual em va visitar un neur\u00f2leg de la zona, el que en un primer moment em va dir que estava estressada i que hauria de provar de portar una vida m\u00e9s tranquil\u00b7la, potser amb l\u2019ajuda d\u2019un medicament relaxant; desesperada per la resposta vaig intentar prendre altres camins, i alhora vaig contactar a un altre neur\u00f2leg, el que, despr\u00e9s d\u2019un inicial escepticisme, va decidir fer-me una resson\u00e0ncia magn\u00e8tica. Mentre ja havien passat tres mesos, era inici novembre i el meu malestar havia empitjorat molt, tant que ja no podia realitzar ni les simples activitats quotidianes, a la pr\u00e0ctica ja no aconseguia coordinar b\u00e9 els moviments.<\/p>\n<p style=\"text-align: justify;\">Desesperada vaig esperar amb ansietat la cita de la RMN fixada per al 10\/11\/2009. Recollida la resposta despr\u00e9s d\u2019uns dies emergia: Discopat\u00eda degenerativa en C5-C6 amb espondilosis i a m\u00e9s s\u2019assenyala ect\u00e0sia del canal ependimal a la juntura cervico-dorsal i al tracto dorsal proximal d\u2019uns mm., s\u2019aconsella repetir aviat una altra RMN. Vaig repetir la prova despr\u00e9s d\u2019uns dies el 09\/12\/2009 i em van reconfirmar el diagn\u00f2stic anterior. Despr\u00e9s d\u2019unes setmanes vaig anar a visita en la consulta privada d\u2019un conegut neurocirurgi\u00e0 que va diagnosticar el seg\u00fcent: cavitat siringomielica en C7-D1 pel que sembla augmentada des de la primera RMN i torticolis espasm\u00f2dic o millor distonia cervical, m\u2019aconsellava llavors repetir una altra RMN per descartar conflictes neurovasculars. Van passar els dies i els meus s\u00edmptomes van empitjorar notablement, vaig comen\u00e7ar a tenir a estones parestesies als dits de les mans, tenia problemes de temperatura corp\u00f2ria i problemes en empassar-se, aix\u00ed que la meva neur\u00f2loga va decidir posar-me en contacte amb un neur\u00f2leg de l\u2019hospital de Perusa per fer un tractament amb Toxina Botul\u00ednica per alleugerir els espasmes de la meva distonia. Vaig ser llavors a visita i ja est\u00e0vem a finals de gener i el neur\u00f2leg va decidir ingressar-me per m\u00e9s controls.<\/p>\n<p style=\"text-align: justify;\">Durant l\u2019estada em van sotmetre a diverses proves i a visites, per a m\u00ed realitzades amb molta superficialitat i amb cap sentit d\u2019humanitat. Vaig repetir la RMN i amb l\u2019alta em van deixar amb el seg\u00fcent diagn\u00f2stic: Siringomielia cervico-dorsal Distonia focal cervical An\u00e8mia Migranyes freq\u00fcents. I el dia de l\u2019alta em van tractar amb toxina botul\u00ednica per la distonia cervical i em van dir que hauria tingut beneficis despr\u00e9s d\u2019uns dies, mentre que per la siringomielia no havia de preocupar-me\u2026 Passaren les setmanes i jo no vaig trobar cap tipus de benefici pel meu torticolis, al contrari cada dia podia fer menys coses, van passar tres mesos i vaig decidir recridar al professor XXX de Perusa per veure si podia anticipar el tractament amb la TB, que a trav\u00e9s CUP anava a passar-se dels quatre mesos, per\u00f2 ell, de forma molt mal educada i sense preocupar-se del meu estat de salut, em va dir que era impossible i que havia d\u2019esperar fins i tot el 16\/6\/2010, una cosa que per a mi era impossible.<\/p>\n<p style=\"text-align: justify;\">Alhora, no segura del protocol per seguir respecte a la siringomielia, vaig anar a veure a un notable luminar de Siena, que, despr\u00e9s d\u2019una r\u00e0pida ullada al cd de la RMN, em va dir que podia estar tranquil\u00b7la perqu\u00e8 potser la cavitat siringomielica no hauria avan\u00e7at mai, i despr\u00e9s de deu minuts de consulta, vaig sortir sense tenir tampoc un informe per escrit, per\u00f2 amb la tristesa d\u2019haver trobat tamb\u00e9 all\u00e0 la mateixa superficialitat de Perusa. Decebuda per tot aix\u00f2, jo continuava sense estar tranquil\u00b7la i em preocupava per la gravetat de la siringomielia, perqu\u00e8 \u00e9s una patologia degenerativa devastadora i necessita una atenci\u00f3 molt especialitzada, la que fins llavors jo no havia obtingut.<\/p>\n<p style=\"text-align: justify;\">Tot el m\u00f3n em deixava al cas, a la incertesa, jo en canvi volia certituds perqu\u00e8 no havia acceptat aquest tipus de canvi sobtat en la meva manera de viure , m\u2019avergonyia de com havia arribat a ser, em sentia una in\u00fatil, ja no podia jugar ni amb la meva filla, els petits gests eren com enormes muntanyes per a escalar\u2026no\u2026alg\u00fa havia d\u2019ajudar-me\u2026 per desesperaci\u00f3 i per ganes de sortir d\u2019aquesta situaci\u00f3 volia a tota costa una resposta de veritat, \u00e9s a dir si la meva vida havia de ser realment tan desastrosa o si hi podia haver una soluci\u00f3. Fins llavors havia viatjat en la foscor sense trobar una sortida, per\u00f2 un dia, navegant en Internet, buscant una cl\u00ednica especialitzada en la meva patologia, vaig trobar l\u2019Institut Chiari Siringomielia i Escoliosi del dott. Royo de Barcelona. No m\u2019assemblava de veritat\u2026 de veritat existia una soluci\u00f3!!!! No m\u2019ho podia creure\u2026 vaig decidir llavors fixar una cita per a una visita i vaig baixar a Barcelona el 19\/05\/2010, estava molt agitada per\u00f2 en el mateix temps contenta, contenta de saber que per fi all\u00e0 hauria trobat un metge preparat, que per fi hauria contestat a les meves preguntes.<\/p>\n<p style=\"text-align: justify;\">Despr\u00e9s d\u2019una visita superatenta i despr\u00e9s de visionar el cd de la RMN, el diagn\u00f2stic es va complicar: Distonia cervical Siringomielia idiop\u00e0tica S\u00edndrome de tracci\u00f3 medul\u00b7lar. De fet em va explicar molt clarament que el meu cas \u00e9s molt complicat i, per evitar que la situaci\u00f3 degener\u00e9s a m\u00e9s, havia de sotmetre\u2019s de seguida a intervenci\u00f3 de Secci\u00f3 de filum terminale per detenir la patologia, quan ning\u00fa no pot saber quan temps es desenvolupa la malaltia. Vaig decidir llavors fixar la data de la intervenci\u00f3 per al 01\/06\/10. Vaig ser operada pel dr. Royo a la Cl\u00ednica CIMA. Jo estava veritablement molt tranquil\u00b7la, la intervenci\u00f3 amb anest\u00e8sia general va durar poc m\u00e9s d\u2019una hora i en despertar em vaig sentir diferent, m\u00e9s lliure de la pesadesa que portava a sobre des de fa anys, i a les vuit hores despr\u00e9s de la intervenci\u00f3 ja havia recuperat diverses coses: les parestesies a les mans havien desaparegut, havia recuperat la temperatura corporal, l\u2019\u00favula estava de nou centrada i havia recuperat el Babinski.<\/p>\n<p style=\"text-align: justify;\">Quedava llavors el problema de la distonia cervical, per\u00f2, amb el pas del temps, vaig comen\u00e7ar a notar petites millores, fins que despr\u00e9s d\u2019un mes aproximadament vaig recuperar totalment la posici\u00f3 correcta del cap, els espasmes van desapar\u00e8ixer i vaig tornar a ser una persona normal com abans. La meva vida ha tornat a comen\u00e7ar gr\u00e0cies a la investigaci\u00f3 del dr. Royo, per aix\u00f2 no deixar\u00e9 mai de donar-li les gr\u00e0cies, \u00e9s una persona especial des de tots els punts de vista.<\/p>\n<p style=\"text-align: justify;\">Agraeixo a m\u00e9s a tot el seu equip i a la Sra. Gioia Lu\u00e8 la gran disponibilitat i professionalitat. Gr\u00e0cies a tots per haver fet somriure de nou a mi i a la meva fam\u00edlia, i per haver-me donat de nou la possibilitat de jugar i c\u00f3rrer amb la meva filla, que en aquesta temporada tan fosca m\u2019ha fet trobar la for\u00e7a de no rendir-me i trobar-vos com a soluci\u00f3 a tots els meus problemes. Per finalitzar, voldria dirigir-me a les persones afectes de la meva mateixa patologia: no espereu que la malaltia faci els seus danys irreversibles, al contrari, intenteu parar-la a temps i dirigir-vos al dr. Royo. Quedo a disposici\u00f3 per qualsevol informaci\u00f3, ad\u00e9u a tots i perdoneu-me si m\u2019he allargat.<\/p>\n<p style=\"text-align: justify;\"><strong>E-mail :\u00a0<a href=\"mailto:rosanna.biagiotti@alice.it\">rosanna.biagiotti@alice.it<\/a><br \/>\nTel\u00e8fon: (+39) 3534043904<\/strong><\/p>\n","protected":false},"featured_media":44386,"template":"","tipos-de-testimonio":[327],"class_list":["post-49959","testimonios","type-testimonios","status-publish","has-post-thumbnail","hentry","tipos-de-testimonio-testimonis-siringomelia-idiopatica"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.1.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Rosanna Biagiotti. Tracci\u00f3 medul.lar. Siringomielia | ICSEB<\/title>\n<meta name=\"description\" content=\"Data d\u2019intervenci\u00f3: maig 2010 Bon dia a tothom. 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