{"id":7621,"date":"2025-02-26T12:22:14","date_gmt":"2025-02-26T11:22:14","guid":{"rendered":"https:\/\/apaiser.org\/newsite\/?p=7621"},"modified":"2025-02-26T14:57:22","modified_gmt":"2025-02-26T13:57:22","slug":"le-parcours-de-gerard","status":"publish","type":"post","link":"https:\/\/apaiser.org\/newsite\/2025\/02\/26\/le-parcours-de-gerard\/","title":{"rendered":"Le parcours de G\u00e9rard"},"content":{"rendered":"\n
\n

Fin 2012, il me dit\u00a0: \u00ab\u00a0Je ne sais pas ce que c\u2019est, je ne vois pas, mais je pense que cela pourrait \u00eatre neurologique, sans en \u00eatre s\u00fbr\u00a0\u00bb. D\u00e9cision ensemble est prise d\u2019aller consulter une neurologue. D\u00e8s le premier rendez-vous, elle d\u00e9tecte des anomalies neurologiques remontant jusqu\u2019aux premi\u00e8res vert\u00e8bres thoraciques. Elle d\u00e9cide alors de m\u2019envoyer passer une IRM de la colonne vert\u00e9brale. Le constat tombe alors imm\u00e9diatement : l\u2019imagerie montre nettement une anomalie, de forme tumorale, bien visible, allong\u00e9e, \u00e9tir\u00e9e, s\u2019\u00e9tendant sur plusieurs vert\u00e8bres.<\/p>\n<\/div>\n\n\n\n

De retour chez la neurologue, elle me donne le diagnostic et son nom : je suis atteint d\u2019une syringomy\u00e9lie. J\u2019ai la chance qu\u2019elle connaisse bien cette pathologie et son suivi en r\u00e9gion parisienne. J\u2019aurais pr\u00e9f\u00e9r\u00e9 \u00eatre diagnostiqu\u00e9 beaucoup plus t\u00f4t. Cela n\u2019aurait pas chang\u00e9 grand-chose, mais \u00e7a aurait \u00e9t\u00e9 plus r\u00e9confortant que de ne pas savoir et donc comprendre beaucoup plus t\u00f4t ce que j\u2019avais et la suite pr\u00e9visible.<\/p>\n\n\n\n

Elle m\u2019adresse imm\u00e9diatement au Professeur Parker et au centre de syringomy\u00e9lie de l\u2019h\u00f4pital du Kremlin Bic\u00eatre. D\u00e8s le premier rendez-vous avec lui, il confirme le diagnostic et me dit qu\u2019il est s\u00fbr qu\u2019\u00e0 terme, sans savoir encore quand, il devra m\u2019op\u00e9rer. Il m\u2019indique de suite les b\u00e9n\u00e9fices et risques de l\u2019op\u00e9ration. Je serai suivi r\u00e9guli\u00e8rement, tous les 6 mois en IRM et consultation, car progressivement les sympt\u00f4mes augmenteront et les risques op\u00e9ratoires et postop\u00e9ratoires avec. Et ce jour-l\u00e0 est arriv\u00e9 d\u00e9but 2014. Une date est alors fix\u00e9e pour octobre 2014.<\/p>\n\n\n\n

L\u2019op\u00e9ration s\u2019est bien pass\u00e9e, bien que plus longue que pr\u00e9vue. Heureusement, dans les mains du sp\u00e9cialiste. C\u2019est quand m\u00eame de la haute technicit\u00e9 !<\/p>\n\n\n\n

Le bilan qu\u2019on peut en faire\u00a0: l\u2019op\u00e9ration \u00e9tait n\u00e9cessaire, pour \u00e9viter \u00e0 terme le fauteuil roulant, alors il faut voir le bon c\u00f4t\u00e9 des choses une marche tranquille mais stabilis\u00e9e. Centre de r\u00e9\u00e9ducation apr\u00e8s l\u2019op\u00e9ration, mais dans mon cas pas tr\u00e8s longtemps, puis beaucoup de kin\u00e9, encore actuellement. Des s\u00e9ances de kin\u00e9 tr\u00e8s efficaces pour cela, mais il faut choisir de vrais professionnels et pas de simple masseur. Reste des douleurs, importantes, musculaires et paresth\u00e9sies, ainsi qu\u2019une tr\u00e8s forte sensibilit\u00e9 douloureuse aux frottements des tissus sur le corps. Malheureusement, apr\u00e8s bien des essais, aucun m\u00e9dicament n\u2019a \u00e9t\u00e9 efficace et les effets secondaires sont encore trop nombreux et trop intenses. Bien des progr\u00e8s restent \u00e0 faire pour le traitement de la douleur, ainsi que pour la connaissance de la syringomy\u00e9lie par les g\u00e9n\u00e9ralistes et certains neurologues. Il faut aussi savoir et se dire que m\u00eame si l\u2019op\u00e9ration est une r\u00e9ussite, tout ne rentrera pas dans l\u2019ordre et que l\u2019al\u00e9a chirurgical et th\u00e9rapeutique de cette maladie est important.<\/p>\n\n\n\n

Beaucoup de soulagements et d\u2019\u00e9changes aussi, \u00e0 partir du moment o\u00f9 j\u2019ai d\u00e9couvert l\u2019association Apaiser. Que ne l\u2019ai-je pas connu plus t\u00f4t ! Des contacts entre malades de la m\u00eame maladie, un \u00e9change d\u2019informations, mais aussi de r\u00e9conforts.\u00a0\u00bb<\/p>\n","protected":false},"excerpt":{"rendered":"

Mon histoire face \u00e0 la syringomy\u00e9lie est d\u2019abord celle d\u2019une longue d\u00e9sh\u00e9rence avant de savoir de quoi j\u2019\u00e9tais atteint. Les premiers sympt\u00f4mes sont apparus sans doute en 2003 par des sensations de jambes lourdes, de chaleurs dans celles-ci, puis de petites d\u00e9charges \u00e9lectriques en surface. Rien de bien inqui\u00e9tant au d\u00e9but. Les premi\u00e8res recherches se sont orient\u00e9es vers une phl\u00e9bologue qui a d\u00e9tect\u00e9e des veines l\u00e9g\u00e8rement fuyantes, mais sans gravit\u00e9. Un contr\u00f4le cardiaque, un contr\u00f4le respiratoire et pulmonaire n\u2019ont pas donn\u00e9 de grands signes cliniques, hormis un souffle court. <\/p>\n

Progressivement ces signes se sont accentu\u00e9s, mais \u00e9galement une marche devenant beaucoup plus lente, plus difficile aussi dans la dur\u00e9e. J\u2019ai commenc\u00e9 \u00e0 m\u2019inqui\u00e9ter d\u2019avantage lorsque famille et amis me disaient de plus en plus souvent que je trainais. Je m\u2019en rendais compte aussi. Avec mon m\u00e9decin de famille on a explor\u00e9 de nombreuses pistes sans vraiment trouver. A partir de 2011, j\u2019ai commenc\u00e9 \u00e0 lui indiquer que cela devenait de plus en plus sensible et que les sensations d\u00e9sagr\u00e9ables du d\u00e9but, devenaient plus douloureuses et la marche plus difficile.<\/p>\n","protected":false},"author":1,"featured_media":7638,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[36],"tags":[],"class_list":["post-7621","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-temoignages"],"yoast_head":"\nLe parcours de G\u00e9rard - 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\/le-parcours-de-gerard\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Le parcours de G\u00e9rard - Apaiser S&C\" \/>\n<meta property=\"og:description\" content=\"Mon histoire face \u00e0 la syringomy\u00e9lie est d\u2019abord celle d\u2019une longue d\u00e9sh\u00e9rence avant de savoir de quoi j\u2019\u00e9tais atteint. Les premiers sympt\u00f4mes sont apparus sans doute en 2003 par des sensations de jambes lourdes, de chaleurs dans celles-ci, puis de petites d\u00e9charges \u00e9lectriques en surface. Rien de bien inqui\u00e9tant au d\u00e9but. Les premi\u00e8res recherches se sont orient\u00e9es vers une phl\u00e9bologue qui a d\u00e9tect\u00e9e des veines l\u00e9g\u00e8rement fuyantes, mais sans gravit\u00e9. Un contr\u00f4le cardiaque, un contr\u00f4le respiratoire et pulmonaire n\u2019ont pas donn\u00e9 de grands signes cliniques, hormis un souffle court. Progressivement ces signes se sont accentu\u00e9s, mais \u00e9galement une marche devenant beaucoup plus lente, plus difficile aussi dans la dur\u00e9e. J\u2019ai commenc\u00e9 \u00e0 m\u2019inqui\u00e9ter d\u2019avantage lorsque famille et amis me disaient de plus en plus souvent que je trainais. Je m\u2019en rendais compte aussi. Avec mon m\u00e9decin de famille on a explor\u00e9 de nombreuses pistes sans vraiment trouver. 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href=\"https:\/\/apaiser.org\/newsite\/category\/temoignages\/\" rel=\"category tag\">T\u00e9moignages<\/a>","rttpg_excerpt":"Mon histoire face \u00e0 la syringomy\u00e9lie est d\u2019abord celle d\u2019une longue d\u00e9sh\u00e9rence avant de savoir de quoi j\u2019\u00e9tais atteint. 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