{"id":7649,"date":"2025-02-26T15:18:12","date_gmt":"2025-02-26T14:18:12","guid":{"rendered":"https:\/\/apaiser.org\/newsite\/?p=7649"},"modified":"2025-02-26T15:18:14","modified_gmt":"2025-02-26T14:18:14","slug":"mon-ptit-chiari-par-sophie","status":"publish","type":"post","link":"https:\/\/apaiser.org\/newsite\/2025\/02\/26\/mon-ptit-chiari-par-sophie\/","title":{"rendered":"Mon p’tit Chiari par Sophie"},"content":{"rendered":"\n

Apr\u00e8s plusieurs rdv en neurochirurgie, j\u2019ai enfin LE rendez-vous. Celui que je rencontre, je me dis directement \u00ab ce sera lui et pas un autre \u00bb : le professeur ASSAKER au CHR de Lille entend, comprend mes doutes, mes peurs, mes interrogations\u2026<\/p>\n\n\n\n

Apr\u00e8s diff\u00e9rents tests, analyses\u2026 le verdict est l\u00e0, l\u2019op\u00e9ration est pr\u00e9vue le 6 f\u00e9vrier 2018.<\/p>\n\n\n\n

L\u2019op\u00e9ration se d\u00e9roule \u00ab bien \u00bb, la douleur est l\u00e0 mais petit \u00e0 petit je refais surface. Quelques semaines apr\u00e8s, ma nuque gonfle. On dirait un dinosaure. IRM, m\u00e9decin, neurochirurgien\u2026 ponction du liquide\u2026 La fuite du liquide c\u00e9phalo-rachidien ne se r\u00e9sorbe pas (je profite de ces mois pour apprendre du vocabulaire m\u00e9dical tr\u00e8s loin de mon pr\u00e9c\u00e9dent quotidien !).<\/p>\n\n\n\n

24 Juillet 2018, seconde op\u00e9ration\u2026 je l\u2019avais lu dans les \u00ab blogs \u00bb que parfois plusieurs op\u00e9rations \u00e9taient n\u00e9cessaires. La fuite est rebouch\u00e9e, la cicatrice diminue, mes cheveux repoussent. <\/p>\n\n\n\n

Durant mon parcours, j\u2019ai lu l\u2019histoire d\u2019un homme qui a fait l\u2019ascension du Kilimanjaro pour sa ni\u00e8ce atteinte d\u2019une maladie rare\u2026 ma petite voix int\u00e9rieur me dit \u00ab tu pourras aussi le faire quand tu iras mieux \u00bb\u2026<\/p>\n\n\n\n

C\u2019\u00e9tait il y a 4 ans, et ce 30 Janvier 2022, je suis mont\u00e9e sur le toit de l\u2019Afrique. Mon \u00ab ptit chiari \u00bb est derri\u00e8re mois. Effectivement, je me suis \u00e9loign\u00e9e de ce combat pour tourner la page. Mais Mado, son combat, l\u2019association APAISER, les malades, les accompagnants, le personnel m\u00e9dical\u2026 vous devez le savoir, parfois on va mieux et c\u2019est aussi gr\u00e2ce \u00e0 vous. <\/p>\n\n\n\n

Je dirais presque MERCI \u00e0 mon p\u2019tit chiari qui m\u2019a fait d\u00e9couvrir les maladies rares, ouvrir un \u0153il sur un monde que personne ne souhaite connaitre. MERCI \u00e0 ceux qui en font leur combat. COURAGE \u00e0 tous ceux qui souhaiteraient fuir\u2026<\/p>\n\n\n\n

J\u2019esp\u00e8re vous donner un peu d\u2019espoir et l\u2019image d\u2019APAISER \u00e0 UHURU PEAK (5895m) \u2013Mont Kilimandjaro (TANZANIE) <\/p>\n\n\n\n

\"\"<\/figure>\n","protected":false},"excerpt":{"rendered":"

Il y a un peu plus de 5 ans, apr\u00e8s des mois de migraines \u00ab\u00a0bizarres\u00a0\u00bb et une IRM du cerveau le verdict tombe \u00ab\u00a0syndrome de Chiari\u00a0\u00bb, \u00ab\u00a0maladie rare\u00a0\u00bb\u2026. Un nouveau tourbillon dans ma t\u00eate\u00a0: le peur, le doute, l\u2019inqui\u00e9tude.<\/p>\n

Une chance dans mon parcours, ma g\u00e9n\u00e9raliste M\u00e9lanie PINCHON\u2026 elle m\u2019\u00e9coute, se renseigne, m\u2019accompagne et m\u2019oriente. Dans cette \u00e9preuve et face au stress des \u00ab\u00a0informations\u00a0\u00bb sur internet je m\u2019approche d\u2019une association APAISER, et j\u2019ai l\u2019opportunit\u00e9 d\u2019\u00e9changer avec Mado, la pr\u00e9sidente. Une \u00e9coute et une bienveillance rare dans un processus si m\u00e9connu, long, compliqu\u00e9. De cet \u00e9change elle me dira \u00ab\u00a0les personnes qui vont bien, souvent, tourne la page et ne donne pas de suite\u2026\u00a0\u00bb Je garde cette phrase en t\u00eate.<\/p>\n","protected":false},"author":1,"featured_media":7650,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[36],"tags":[],"class_list":["post-7649","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-temoignages"],"yoast_head":"\nMon p'tit Chiari par Sophie - Apaiser S&C<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/apaiser.org\/newsite\/2025\/02\/26\/mon-ptit-chiari-par-sophie\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Mon p'tit Chiari par Sophie - Apaiser S&C\" \/>\n<meta property=\"og:description\" content=\"Il y a un peu plus de 5 ans, apr\u00e8s des mois de migraines \u00ab\u00a0bizarres\u00a0\u00bb et une IRM du cerveau le verdict tombe \u00ab\u00a0syndrome de Chiari\u00a0\u00bb, \u00ab\u00a0maladie rare\u00a0\u00bb\u2026. 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