{"id":50989,"date":"2018-01-11T00:00:00","date_gmt":"2018-01-10T23:00:00","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/testimonios\/dayse-aparecida-ferreira-syndrome-neuro-cranio-vertebral-descente-des-amygdales-cerebelleuses-syndrome-darnold-chiari-i-kyste-intra-medullaire-syringomyelie-idiopathique\/"},"modified":"2026-02-27T12:25:11","modified_gmt":"2026-02-27T11:25:11","slug":"dayse-aparecida-ferreira-syndrome-neuro-cranio-vertebral-descente-amygdales-cerebelleuses-syndrome-darnold-chiari-i-kyste-intra-medullaire-syringomyelie-idiopathique","status":"publish","type":"testimonios","link":"https:\/\/institutchiaribcn.com\/fr\/dayse-aparecida-ferreira-syndrome-neuro-cranio-vertebral-descente-amygdales-cerebelleuses-syndrome-darnold-chiari-i-kyste-intra-medullaire-syringomyelie-idiopathique\/","title":{"rendered":"Dayse Aparecida Ferreira. Syndrome Neuro-Cr\u00e2nio-Vert\u00e9bral. Descente des Amygdales C\u00e9r\u00e9belleuses (Syndrome d\u2019Arnold Chiari I). Kyste intra-m\u00e9dullaire (Syringomy\u00e9lie idiopathique)"},"content":{"rendered":"

 <\/p>\n

\"\"<\/a>Date de l\u2019intervention\u00a0: Mars 2017<\/strong><\/p>\n

\"\"<\/a><\/p>\n

Je m\u2019appelle Dayse, j\u2019ai 34 ans et depuis mes 28 j\u2019ai eu des douleurs qui apparaissaient et s\u2019en allaient, sans que sa cause pourrait \u00eatre d\u00e9couverte.<\/p>\n

En juillet 2014 ces douleurs se sont intensifi\u00e9es et je devais aller aux urgences, puisque-elles \u00e9taient tellement fortes. J\u2019ai \u00e9t\u00e9 diagnostiqu\u00e9 avec lombalgie, d\u00e9pression et fibromyalgie. Selon les traitements et les m\u00e9dicaments propos\u00e9s selon les orientations m\u00e9dicales, mais rien ne calm\u00e9 mes douleurs. Pendant une forte crise je suis all\u00e9 \u00e0 l\u2019h\u00f4pital et j\u2019ai expliqu\u00e9 au docteur que je ne support\u00e9 plus tellement de maux de t\u00eate et de devoir prendre des m\u00e9dicaments sans noter aucune diff\u00e9rence. Elle \u00e0 donc sollicit\u00e9 une r\u00e9sonance de ma colonne (r\u00e9gion lombosacr\u00e9) et, avec le r\u00e9sultat, elle m\u2019a conseill\u00e9 voir orthop\u00e9diste.<\/p>\n

L\u2019orthop\u00e9diste, apr\u00e8s \u00e9valuer ma r\u00e9sonance, il m\u2019a dit qu\u2019une alt\u00e9ration avait \u00e9t\u00e9 d\u00e9tect\u00e9\u00a0; mais il ne me la pas expliqu\u00e9. Il m\u2019a dit aussi que je devais consulter avec un sp\u00e9cialiste de la colonne. Quand je suis arriv\u00e9 \u00e0 la maison, je me suis mis \u00e0 chercher sur internet le terme \u00ab\u00a0Syringomy\u00e9lie\u00a0\u00bb, et tous les r\u00e9sultats disaient qu\u2019il s\u2019agissait d\u2019une \u00ab\u00a0pathologie rare et d\u00e9g\u00e9n\u00e9rative de la moelle \u00e9pini\u00e8re, sans cure et qu\u2019avec le temps celle-ci pourrait obliger au patient d\u2019aller en fauteuil roulant\u00a0\u00bb. \u00c0 ce moment l\u00e0, je me suis aper\u00e7u que j\u2019avais une \u00ab\u00a0bombe\u00a0\u00bb entre mes mains. Pendant ma premi\u00e8re recherche sur Internet j\u2019ai trouv\u00e9 le site de l\u2019Institut Chiari & Siringomielia & Escoliosis de Barcelona, mais je n\u2019ai pas fais trop attention a l\u2019information\u2026\u00a0; \u00e9tant donn\u00e9 que il \u00e9tait indiqu\u00e9 exactement le contraire de ce que j\u2019avais lu avant. Apr\u00e8s avoir d\u00e9termin\u00e9 plus d\u2019information concernant la maladie, j\u2019ai connu des groupes de soutien sur Facebook form\u00e9s par des malades et, rapidement, j\u2019ai compris que cette maladie n\u2019\u00e9tait pas si rare, parce-que il y avait beaucoup de membres dans les groupes.<\/p>\n

Dans le premier groupe, j\u2019ai contact\u00e9 avec quelques personnes qui avait subit l\u2019op\u00e9ration \u00e0 Barcelone et ses t\u00e9moignages \u00e9taient les meilleurs, et tr\u00e8s diff\u00e9rents de beaucoup de patients qui s\u2019\u00e9taient fait op\u00e9rer par la technique conventionnelle ici au Br\u00e9sil. J\u2019ai envoy\u00e9 mes comptes rendu \u00e0 l\u00a0\u2018Institut et eux ils m\u2019ont envoy\u00e9 in certificat dans lequel ils m\u2019inform\u00e9s que j\u2019\u00e9tait atteinte du Syndrome Neuro-cr\u00e2nio-vert\u00e9bral, en plus de la Syringomy\u00e9lie et que j\u2019avais un Syndrome d\u2019Arnold Chiari I. Ils m\u2019ont aussi envoy\u00e9 un devis du co\u00fbt de l\u2019intervention. En avril 2016, je me suis d\u00e9cid\u00e9 \u00e0 cr\u00e9er une collecte de fonds pour recueillir la totalit\u00e9 n\u00e9cessaire. La dur\u00e9e de la collecte \u00e9tait approximativement d\u2019un an, et le jour 21\/03\/2017, la chirurgie de Section du Filum Terminale tellement esp\u00e9r\u00e9e s\u2019est fait r\u00e9el. Huit heures apr\u00e8s l\u2019intervention on a d\u00e9j\u00e0 observ\u00e9 des am\u00e9liorations significatives, comme la r\u00e9cup\u00e9ration de la force dans mes bras et jambes. Apr\u00e8s dix jours, pendant la visite de contr\u00f4le postop\u00e9ratoire, on m\u2019a d\u00e9tect\u00e9 d\u2019autres am\u00e9liorations. Celle qui m\u2019a plus attir\u00e9 l\u2019attention c\u2019\u00e9tait la diminution de l\u2019hypor\u00e9flexie dans trois zones et dans le bras droit (dans lequel j\u2019avais d\u00e9j\u00e0 une perte moteur). Simplement, mes reflexes s\u2019avaient normalis\u00e9\u00a0; un tableau d\u2019am\u00e9lioration qui selon on m\u2019avait inform\u00e9, pourrait \u00eatre v\u00e9rifi\u00e9 que apr\u00e8s un an depuis la chirurgie. La principale am\u00e9lioration a \u00e9t\u00e9 la disparition des douleurs constantes dans la nuque, t\u00eate, r\u00e9gion cervicale, \u00e9paule droite et r\u00e9gion lombaire, ce qui me donna une meilleure qualit\u00e9 de vie. Il fera maintenant trois mois depuis que j\u2019ai \u00e9t\u00e9 op\u00e9r\u00e9e et depuis je n\u2019ai pas pris plus d\u2019antid\u00e9presseurs (que l\u2019on m\u2019indiqu\u00e9 parce qu\u2019ils disaient que mes douleurs \u00e9taient psychologiques).<\/p>\n

Avec la chirurgie, les m\u00e9decins de l\u2019Institut essaient de stopper l\u2019\u00e9volution de la maladie, mais dans mon cas, j\u2019ai vaincu, et je peux dire que cet argent a \u00e9t\u00e9 le mieux d\u00e9pens\u00e9 dans de toute ma vie. Je remercie \u00e0 Dieux et \u00e0 ceux qui m\u2019ont aid\u00e9 a faire de ce r\u00eave une r\u00e9alit\u00e9. J\u2019esp\u00e8re que mon t\u00e9moignage et celui d\u2019autres patients pourront attirer l\u2019attention de nos m\u00e9decins pour que plus de personnes puissent b\u00e9n\u00e9ficier de cette m\u00e9thode.<\/p>\n

Email de contact:\u00a0ayse.ap@hotmail.com<\/a><\/p>\n","protected":false},"featured_media":50990,"template":"","tipos-de-testimonio":[339],"class_list":["post-50989","testimonios","type-testimonios","status-publish","has-post-thumbnail","hentry","tipos-de-testimonio-syringomyelie-idiopathique-temoignages"],"yoast_head":"\nDayse Aparecida Ferreira : Chiari I et syringomy\u00e9lie | ICSEB<\/title>\n<meta name=\"description\" content=\"Dayse Aparecida Ferreira partage son t\u00e9moignage vid\u00e9o sur Chiari I et syringomy\u00e9lie idiopathique \u00e0 l\u2019ICSEB.\" \/>\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\/fr\/dayse-aparecida-ferreira-syndrome-neuro-cranio-vertebral-descente-amygdales-cerebelleuses-syndrome-darnold-chiari-i-kyste-intra-medullaire-syringomyelie-idiopathique\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta 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