{"id":49913,"date":"2014-04-02T00:00:00","date_gmt":"2014-04-01T22:00:00","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/testimonios\/emil-sindrome-de-traccio-medullar-sindrome-darnold-chiari-i-i-siringomielia-idiopatica\/"},"modified":"2026-03-20T10:14:27","modified_gmt":"2026-03-20T09:14:27","slug":"emil-sindrome-traccio-medul%c2%b7lar-sindrome-darnold-chiari-siringomielia-idiopatica","status":"publish","type":"testimonios","link":"https:\/\/institutchiaribcn.com\/ca\/emil-sindrome-traccio-medul%c2%b7lar-sindrome-darnold-chiari-siringomielia-idiopatica\/","title":{"rendered":"Emil. S\u00edndrome de tracci\u00f3 medul\u00b7lar, S\u00edndrome d\u2019Arnold Chiari I i Siringomi\u00e8lia Idiop\u00e0tica"},"content":{"rendered":"<p>&nbsp;<\/p>\n<p style=\"text-align: justify;\"><strong>Data de la intervenci\u00f3: Novembre del 2012<\/strong><\/p>\n<p style=\"text-align: justify;\">A l\u2019agost del 2010 l\u2019Emil, nascut al novembre del 2008, va caure malalt: va deixar de caminar i estava completament fl\u00e0ccid; quan fins al moment, el seu desenvolupament havia estat normal. Els metges no sabien que estava passant i van decidir realitzar-li diversos ex\u00e0mens dels quals van concloure que probablement tenia mielitis. No havien vist res preocupant a les imatges de la resson\u00e0ncia (\u00fanicament despr\u00e9s de tres anys, un radi\u00f2leg ens va dir que hi havia un descens de les am\u00edgdales de 7mm que en aquell moment va ser considerat normal). L\u2019Emil es recuperava lentament. Despr\u00e9s de dos mesos va comen\u00e7ar a caminar, per\u00f2 coixejant. Vam visitar diferents metges i ells ens van presentar diferents teories. Van trobar que l\u2019Emil tenia una par\u00e0lisi del costat esquerre del cos. Des de la tornada de l\u2019hospital va estar anant a rehabilitaci\u00f3.<\/p>\n<p style=\"text-align: justify;\">Despr\u00e9s de tres mesos vam repetir la resson\u00e0ncia i aquest cop els metges van observar el descens de les am\u00edgdales de 11 mm i ens van suggerir consultar a un neurocirurgi\u00e0. Vam anar a Poznan per a visitar un metge qui despr\u00e9s d\u2019alguns minuts de la visita va indicar la descompressi\u00f3; basant-se en la inclinaci\u00f3 del cap que l\u2019Emil suposadament tenia. Al mar\u00e7 del 2011, a Poznan, a l\u2019Emil li van practicar una craniotomia suboccipital \u201cparcial\u201d. Despr\u00e9s va comen\u00e7ar la rehabilitaci\u00f3: a casa, a diferents centres i amb rehabilitadors privats. Quan caminava es queia molt, no controlava les seves necessitats, el seu puny esquerre sempre estava tancat (l\u2019examen d\u2019EMG mostrava un 60% de nervis malmesos) i quan estava en peu tenia la postura de la \u201ccadira\u201d.<\/p>\n<p style=\"text-align: justify;\">Al gener del 2012 van repetir la resson\u00e0ncia que va demostrar que el descens de les am\u00edgdales era de 15mm i a m\u00e9s van apar\u00e8ixer tres cavitats de Siringomi\u00e8lia. A l\u2019agost del mateix any (en menys de 7 mesos), aquestes tres cavitats havien augmentat el seu di\u00e0metre pr\u00e0cticament a l\u2019ampl\u00e0ria de la medul\u00b7la i en van apar\u00e8ixer tres m\u00e9s. Un professor de Vars\u00f2via va indicar-nos una segona craniotomia. Ens aterria la rapidesa amb la qual s\u2019estaven produint les lesions al cervell i en la medul\u00b7la del nostre fill. A m\u00e9s, despr\u00e9s de l\u2019\u00fanic \u201ctractament\u201d que ens oferien a Pol\u00f2nia, van apar\u00e8ixer les cavitats a la medul\u00b7la que abans no existien, i ara els metges volien repetir la mateixa cirurgia.<\/p>\n<p style=\"text-align: justify;\">Literalment, pocs dies abans de la descompressi\u00f3 prevista ens va arribar la informaci\u00f3 sobre la possibilitat d\u2019un tractament a Barcelona. R\u00e0pidament vam haver de prendre una decisi\u00f3; aix\u00ed que vam cancel\u00b7lar l\u2019operaci\u00f3 i vam programar una SFT a Barcelona (novembre del 2012). Just despr\u00e9s de l\u2019operaci\u00f3 no vam observar canvis espectaculars, per\u00f2 s\u00ed que es va observar que la m\u00e0 esquerra estava m\u00e9s relaxada, no tan tensa com ho estava abans. Despr\u00e9s de dues setmanes de tornar a Pol\u00f2nia, l\u2019estat de l\u2019Emil va empitjorar bastant (el meu fill va tornar a no poder caminar un altre cop) i aix\u00f2 va durar unes dues setmanes. En un principi va tornar fins a l\u2019estat anterior a la intervenci\u00f3 i despr\u00e9s va millorar encara m\u00e9s. A causa de l\u2019empitjorament, vam visitar uns metges a Pol\u00f2nia i la neur\u00f2loga ens va comentar que l\u2019operaci\u00f3 no havia ajudat ni tampoc fet cap mal, pel que vaig entendre que ens havien estafat. Ella ens va donar una petici\u00f3 per a realitzar una nova resson\u00e0ncia.<\/p>\n<p style=\"text-align: justify;\">A l\u2019abril del 2013 vam anar a l\u2019hospital. Vam comentar als metges que l\u2019estat de l\u2019Emil havia anat millorant, per\u00f2 no ens van creure. Els canvis en la resson\u00e0ncia comparativa feta tres mesos abans de la intervenci\u00f3 van ser m\u00ednims, la qual cosa era molt bona senyal segons el nostre sentit com\u00fa, ja que abans els canvis progressaven a un ritme alarmant. Els neur\u00f2legs ens van proposar consultar-ho amb el neurocirurgi\u00e0 que li havia fet la craniotomia per a que li fes el drenatge de les cavitats (el que suposadament seria una intervenci\u00f3 de molt de risc).<\/p>\n<p style=\"text-align: justify;\">Nosaltres, en canvi, vam contactar amb el neurocirurgi\u00e0 de Barcelona i vam consultar un radi\u00f2leg de Poznan qui amb detall va mesurar les cavitats d\u2019abans i despr\u00e9s de l\u2019operaci\u00f3. Aquestes consultes ens van tranquil\u00b7litzar. A m\u00e9s, nosaltres mateixos vam observar algunes millores \u2013 L\u2019Emil caminava millor, quan estava de peu estava m\u00e9s recte (tamb\u00e9 va anar a rehabilitaci\u00f3 intensivament). La seg\u00fcent resson\u00e0ncia que vam fer va ser al febrer del 2014 ( 10 mesos despr\u00e9s de l\u2019\u00faltima). No es va observar cap canvi. Ara l\u2019Emil va a la guarderia i practica dansa, judo, futbol i nataci\u00f3. Est\u00e0 igual de b\u00e9 que els seus companys. Segueix fent rehabilitaci\u00f3.<\/p>\n<p style=\"text-align: justify;\">Encara no est\u00e0 del tot b\u00e9. Existeixen alguns problemes amb el control de les seves necessitats, per\u00f2 ho fa molt millor que abans. Quan est\u00e0 despullat es pot veure que alguna cosa no est\u00e0 b\u00e9, per\u00f2 a la guarderia es comporta com la resta dels nens (potser corre una mica m\u00e9s lentament). Al mar\u00e7 del 2014 vam anar al neur\u00f2leg, que l\u2019any anterior ens havia comentat que la intervenci\u00f3 no havia ajudat a l\u2019Emil, i ara ens deia que estava molt millor (per exemple ens va dir que el signe de Babinski havia desaparegut).<\/p>\n<p style=\"text-align: justify;\">Gr\u00e0cies a l\u2019operaci\u00f3 i a la rehabilitaci\u00f3, l\u2019Emil em sorpr\u00e8n cada vegada m\u00e9s amb el seu bon estat f\u00edsic.<\/p>\n","protected":false},"featured_media":44124,"template":"","tipos-de-testimonio":[325],"class_list":["post-49913","testimonios","type-testimonios","status-publish","has-post-thumbnail","hentry","tipos-de-testimonio-testimonis-sft-despres-duna-craniotomia-suboccipital"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.1.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Emil tracci\u00f3 medul\u00b7lar Chiari I siringomi\u00e8lia | ICSEB<\/title>\n<meta name=\"description\" content=\"Data de la intervenci\u00f3: 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