La Comunidad- Montserrat Villanueva

Los Quistes de Tarlov

imagesMi nombre es Ana Belén García y soy la presidenta de la Asociación Española de Pacientes con  Quistes de Tarlov. Hace diez años esta Asociación no existía y gracias a la gran labor de Isabel Jiménez, fundadora de la misma en el año 2008, hoy en día tenemos esta Asociación que tanto nos ayuda y apoya.

Yo ahora, he recogido el testigo y gracias a la gran ayuda que estoy recibiendo por parte de algunos asociados,  continúo el trabajo que ellos emprendieron.

Los Quistes de Tarlov (QT), son pequeñas masas que se forman a expensas de las dos capas más internas de las meninges, la duramadre y el aracnoides. Los quistes, que contienen líquido cefaloraquídeo (LCR), presentan un pedículo, a través del cual se comunican con el espacio subaracnoideo espinal, se sitúan alrededor de los nervios de la zona sacra y lumbar, y suelen diagnosticarse de manera incidental en el transcurso de una Resonancia Magnética (RMN).

En la actualidad, 95% de los profesionales sanitarios creen que los Quistes de Tarlov son asintomáticos. La mayoría de los Radiólogos creen que los Quistes carecen de significación clínica y muchos omiten su presencia en los informes, oscureciendo y retrasando el diagnóstico. Es mas incluso cuando son informados adecuadamente no son tratados. Nuestra experiencia nos ha demostrado, que por término medio transcurren entre dos y cuatro años para encontrar un especialista que de credibilidad a nuestro dolor y valore atribuirlo a la presencia de los Quistes. Desde la Asociación estamos trabajando para intentar informar a todas las consultas que recibimos e intentar que los pacientes pidan la derivación a los especialistas que nosotros conocemos.

Tenemos un grave problema, y es que a un gran elevado número de pacientes se les ha sugerido una derivación a las consultas de Psiquiatría, dado que se piensa que su dolor es psicosomático. Muchos pacientes han tenido que abandonar su vida laboral sin ningún reconocimiento no ya de discapacidad sino de la clínica que presentan.

La angustia, la desesperación, la pérdida de estima personal, la pérdida del empleo, y las lamentables reacciones psicológicas, causan secuelas de dimensiones increíbles, por lo que la investigación en nuevos tratamientos, tanto farmacológicos como quirúrgicos es fundamental. Pero hasta el momento actual, en España no se ha desarrollado ningún proyecto de investigación sobre nuestra enfermedad.

Las manifestaciones clínicas dependen de la raíz nerviosa que queda comprimida por el quiste. Síntomas sensitivos o motores. La mayoría de los afectados presentan uno o más quistes y presentan un dolor local severo en las zonas inervadas por las raíces nerviosas afectadas por el/los quistes, entre los que se encuentran: dolor en los glúteos, dolor en las piernas, muslos, caderas y pelvis. También pueden producirnos parestesias o perdidas de sensibilidad, disestesias  o trastornos en la sensibilidad , ardor, quemazón…

Estos síntomas nos imposibilitan para permanecer sentados durante tiempos superiores a 30 minutos, no podemos permanecer de pie y las distancias que podemos recorrer caminando son mínimas. Tenemos un serio problema de movilidad que en la actualidad no se está valorando.

Tenemos grandes secuelas físicas y psíquicas. La mayoría de nosotros hemos perdido gran parte de nuestra vida social y como físicamente estás “estupendo“ es difícil que comprendan tu dolor, o tu necesidad de descanso casi permanente.

El principal problema con el que nos enfrentamos es el total desconocimiento de nuestra enfermedad en el sistema sanitario, y la tremenda creencia lamentablemente extendida que los Quistes de Tarlov son asintomáticos.

En la  actualidad, en nuestra Asociación somos 54 personas. Pero los datos que tenemos del Instituto de Salud Carlos III son que en España hay registradas 79 personas.

Desde la Asociación, estamos trabajando con un objetivo claro “el reconocimiento de nuestra enfermedad”. No podemos permitir que esta enfermedad siga siendo una gran desconocida.

Somos una Asociación muy pequeña y con recursos muy escasos. El trabajo que realizamos lo hacemos desde nuestras propias casa y desde los ratos libres de los que disponemos. Hace cuatro meses hemos puesto una nueva página web, que mantenemos constantemente actualizada.

Respondemos a todas las consultas que recibimos, tanto por e-mail como telefónicamente. Mantenemos a nuestros socios, informados de todas las noticias que vamos recibiendo y nos prestamos ayuda mutua, fundamentalmente psicológica, pues las secuelas de la incomprensión son tremendas.

Estamos en contacto con el resto de Asociaciones de Quistes de Tarlov tanto europeas como americanas, tratamos de mantenernos informados y de crear una unión entre todos los pacientes de Quistes de Tarlov a nivel mundial.

Estamos intentando difundir nuestra patología a través de los medios que nos proporcionan las redes sociales, y sobre todo, nuestro trabajo está siendo intentar llegar a los profesionales sanitarios que quieren leernos y escucharnos.

Cada vez que FEDER organiza un evento, intentamos estar presentes. Necesitamos ser “visibles” y esa visibilidad sólo nos la puede dar la publicidad y la difusión. Pero nuestros medios son escasos, y las posibilidades que nos ofrece la prensa tradicional son limitadas.

No podemos rendirnos y tenemos que seguir adelante, luchando por nuestra enfermedad  y por nuestra Asociación. Por qué nuestra “Voz” se escuche y llegue a todos los oídos que no quieren oírla. ¿Somos una enfermedad rara o una enfermedad desconocida?.

La psicóloga Jenny Moix escribió:

 

“Ojala se inventara un termómetro para medir el dolor con exactitud… Si imagináramos un mundo donde existiera ese termómetro muchas situaciones cambiarían. Las personas con dolor crónico, en el largo recorrido de visitas médicas, tropiezan, en más de una ocasión, con profesionales que insinúan que están exagerando su dolor o que es psicológico o inventado. Si ese termómetro existiera, esas insinuaciones desaparecerían, los médicos se sentirían más seguros en su trabajo y los pacientes mas comprendidos”.

 

“La necesidad que sienten las personas aquejadas de dolor de que las personas que se encuentran alrededor entiendan como sufren, como se sienten, y acepten que su dolor es real, es tan profunda que suele gritar más que el propio dolor”.

 

Este artículo ha sido escrito por Ana Belén García, presidenta de la Asociación de Pacientes con Quistes de Tarlov, como colaboración con Raras pero no invisibles. Podéis seguirlos en @APQTpresidenta,  www.quistesdetarlov.es

Contacto: presidenta@quistesdetarlov.es ; consultas@quistesdetarlov.es

Foro Facebook: Quistes de Tarlov – Tarlov Cyst Society of Spain

Foto cedida por Montserrat Villanueva Del Moral “La Comunidad”

https://www.flickr.com/photos/mon06/

2.778 pensamientos sobre “Los Quistes de Tarlov”

  1. Hola, veo que tiene los mismos problemas que aquí en Francia.
    No siempre son incluidos en el mundo de la medicina, no lo hacemos o encararse de manera adecuada, y algunos médicos creen que el dolor es sólo psicosomática …

    Es suficiente con que viven un día o una hora con nuestra patología ENTIENDEN!

    Más preciso y bien distribuida en el entorno médico, social (seguridad social) y financieros, los pacientes pueden tener mejores normas para el reconocimiento de la enfermedad y la discapacidad resultante con la información más respaldada.

    Especialmente mantener su coraje, seguir adelante, nunca darse por vencido, seremos varios más fuerte y mejor reconocido.

    Nicole

  2. I am a Tarlov survivor, from the United states. I had surgery 2 years ago & was doing great until a few weeks ago. A major episode on my back started after a steroid injection for an unrelated rash. My family doctor ordered another MRI & it came back bad. Sent disk to my surgeon, Dr Feigenbaum & I am waiting to hear from him. JEANIE

  3. Quisiera ponerme en contacto con la asociación sobre “Quistes de Tarlov” pero no consigo hacerlo por Internet, ruego me indiquen el teléfono de la misma, a ser posible.
    Atentamente
    Mayte Callejón

  4. Les presento agradecimientos y disculpas por no trabajar como ustedes lo hacen en algo que me atañe y donde estoy ejercitando cada día como ustedes internamente.“Quistes de Tarlov”

    1. Lisa, cada uno lucha a su manera y a veces te faltan fuerzas para hacerlo.

      No es fácil, y más teniendo en cuenta que somos pacientes y nuestra vida es difícil como consecuencia de esta patología, pero sabemos que la única forma de conseguir algo es luchando y no rendirnos.

      Un saludo

  5. Hola. Hace años (más de 15) que siento esos bultos en la zona dónde se ubican estos quistes de Tarlov. Siempre los sentí al tacto y me causa impresión tocarme esa zona y tampóco dejo que nadie me toque allí. Siento como unas bolas pero que se desplazan al hacer presion . En todos estos años no sentí dolor y por eso núnca acudí a un especialista. Si recibo un masaje pido que no me toquen esa zona ya que me causa impresión. Tengo 35 años y hace años que no pienso en eso, pero ultimamente comencé a tocar esa zona y sigue igual, me da pánico tocar allí ya que puedo sentir el desplazamiento y me causa mucha impresión asi que trato de evitarlo. Comenzé a ver por internet y dí con esto. Leo en muchos casos que los medicos minimizan esta preocupación en los pacientes y que algunos son deribados a psiquiatras creyendo que sus dolores son psicosomáticos. Mi inquietud es si estos quistes pueden pasar desapercibidos por ausencia de molestias o dolor. Y si esto puede comenzar a empeorar de forma dolorosa en algún momento. Los médicos subestiman a veces a los pacientes ya que estos vienen informados y creen que en internet todo lo que se lee es errado y que sólo son hipocondríacos. ¿y si los pacientes tienen algo real? ¿Si no presenta dolor quiere decir que no tengo nada por preocuparme? A mi me preocupa tener 4 bultos en la zona del sacro donde siento desplazamiento al tocarlos, no son visibles estos bultos, solo se perciben al tocarlos ejerciendo leve presión. No le temo a una operación preventiva, le temo a un mal diagnóstico y que esto se convierta luego en algo doloroso en el futuro y sin tratamiento. ¿Puede que hayan casos sin dolor luego de tantos años y estos comienzen a molestar? Por supuesto que ahora iré al medico, sé que eso no es normal en el cuerpo pero ahora tambien le temo a una falta de atención por tantos casos leídos y más si me presento sin dolor alguno. Agredecería alguna respuesta a mis inquietudes. Muchas gracias

    1. Es necesario que un profesional estudie tu caso.

      Tienes que ir al neurocirujano que es el especialista que trata nuestra patología.

      Por otro lado, los encargados de pautar la medicación adecuada son las Unidades del dolor.

      Efectivamente, de repente un dolor desconocido aparece un día en tu vida y te la trastorna por completo. Por qué? No lo sabemos. Por esto necesitamos estudios de investigación sobre nuestra patología.

      Envianos una consulta a nuestro buzón y te daremos información más detallada: consultas@quistesdetarlov.es

  6. Hola.

    Comenze con un dolor suave que parecia ser una inflamacion intestinal…. en un primer momento lo asocie con una situacion emocional, con el paso del tiempo …. se fue agravando en sintoma y despues de recorrer varios especialistas medicos ; medicina general, gastroenterologia, traumatologia, termine en una sala de emergencia de traumatologia pidiendo desesperada una inyeccion de algo que calmara el dolor, ya que los antinflamatorios no resultaban positivos. Ordenaron una RSM, que dio como diagnostico QUISTES DE TARLOV a los que el medico que trata mi espalda, ya que tengo un hernia de disco, no le dio demasiada importancia, diciendo que los tengo desde que naci”…. me gustaria saber si la Ozonoterapia puede ser un tratamiento viable? gracias

    1. Hola, hace unas horas una RM, realizada a mi hija de 17 años,dio como resultado QT, hace dos años atrás recurrimos a una guardia y fue internada por fuertes dolores de espalda relacionados a un proceso nervioso, le hicieron endoscopia y otros estudios ,en ese momento nunca supimos el origen del dolor, leyendo un poco ahora todo tiene sentido,vivimos en la provincia de Salta, Argentina y la verdad estoy anodadada, voy a consultar con un neurocirujano, desde ya gracias por crear este contacto

  7. Tengo 37 años. Me diagnosticaron Quiste de Tarlov de 8 cm hace más de un año, y aunque llevaba unos 4 años antes acudiendo a hacerme pruebas médicas por sentir dolor muy fuerte en zona lumbar que se irradiaba hacia caderas, glúteos y piernas, siempre me dijeron que no tenía nada. Tuve un accidente de tráfico (moto) en enero de este año. A partir de entonces los dolores que sentía ocasionalmente en esas zonas se han hecho continuos y muy intensos. Tras varias infiltraciones con anestésicos (epidural) y corticoides y sin mejoría, y tratamientos con Tramadol, lyrica, diazepam, yurelax, Arcoxia, y enantyum, sigo cada vez más afectada. No puedo realizar mis actividades habituales, ni en mi trabajo ni en mi vida social. Mi familia y conocidos no son muy conscientes del problema, siempre buscan excusas para mi dolor cuando pocas veces me quejo. Me gustaría saber si existe un tratamiento paliativo efectivo y si puedo acudir a algún centro en Sevilla. Gracias.

    1. Hola. Les esribo desde Trujillo, Perú. Hace cuatro días que, mediante una resonancia magnética, me han diagnosticado Quiste de Tarlov de 10 mm de diámetro. Buscando en internet topé con esta página y también con la siguiente: http://www.elsevier.es/es-revista-rehabilitacion-120-articulo-quistes-tarlov-tres-casos-sintomaticos-13066129
      Esta última página se encuentra decrito el tratamiento para combatir el dolor causado por este quiste. Quizás sea bueno revisarlo.
      Sin embargo, pregunto, nuevamente, la ozonoterapia podría ser efectiva? Ya se conocen casos exitosos?

      1. Buen dia,
        Hasta el momento de mi inveastigacion no hay resultados contundentes de que funcione, mayormente se toman medidas paliativas ya que nuestro sistema de salud en Peru no cuentan con metodos actualizados y ademas que no se encuentra reconocido como para recibir un tratamiento especializado.
        Atte: Lic. Neiser Quinteros C.

  8. me acaban de ver en una resonancia que tengo un quiste de Tarlov el traumatologo me dijo que no haga caso que no tiene importancia pero yo tengo todos los sintomas que me gustaria que me dijeseis si hay manera de aliviar este dolor podeis contar conmigo para lo que sea gracias

    1. ¡Hola Pepa!.

      Siento que te encuentres tan mal. Es muy importante que seas tratada con la medicación adecuada, y eso te lo deben pautar en las Unidades del Dolor. El especialista que te debe tratar es el neurocirujano.

      Si quieres pertenecer a la Asociación envianos un correo electrónico a nuestro buzón: consultas@quistesdetarlov.es.

      Un abrazo,

      Ana García

  9. Yo tenía un quiste de tarlov hace 6 años , pero no tenía síntomas .Ahora llevo un tiempo con muchos dolores en el glúteo derecho y en la zona lumbar.Estoy operada de la Arnord Chiari otra enfermedad rara , entonces los neurocirujano no le dieron importancia , Ahora he ido al traumatólogo y me mandó una RM y tengo un quiste bastante voluminoso , y con mucho dolor el día 21 voy al consulta al ver que me dice, yo soy de Salamanca .

  10. Buenos días Ana, he sabido de ti a través de Macarena una paciente de quistes de Tarlov, residente en Valencia. Desde 2011 que empecé con molestias lumbares, glúteos, piernas …, al final consegui que el traumatólogo me mandase una resonancia y estos son los resultados. “Cambios degenerativos espondilósicos y espondiloartrósicos con imagen de retrolistesis, tipo 1, de L5 sobre L4. El disco espacio l$-L5 presenta una sudoprotunsión, por la listesis descrita, con mayor impronta sobre el receso lateral derecho. Protrusión medial del disco L5-S1. Signos de síndrome facetario en L5-S1 y L4-L5, especialmente en lado izquierdo, y en L2-L3 en lado derecho. Quistes radiculares bilaterales.” De esto ultimo de los quiste me dice que no haga mucho caso pues no tienen mayor importancia. De lo demás me pregunta que como me siento y le digo que suele ser un dolor diario soportable y que cuando me siento peor tomaba paracetamol. Me dice que siga así y que si en algún momento noto algo más que vuelva.
    Lo cierto es que me quede desconcertada, y si es posible quisiera saber si me puedes informar si dichos quistes son los denominados Quistes de Tarlov. Lo cierto es que le pregunte al traumatólogo pero no me dio ninguna respuesta.
    Espero no haberme enrollado mucho, y quedo a la espera de tu respuesta.
    Puedas o no aclarármelo, muchas gracias.

  11. Hacen mas de tres años, en uno RMN me encontraron tres quistes de Tarlov y adicional degeneración de los disco. El Neurocirujano me indico que los quistes son de nacimiento y que no hay nada que hacer con ellos y que no me los dejara tocar. Yo tengo todos los síntomas mencionado en su articulo y estoy consiente de todo, pero aquí en Puerto Rico no hay medico que sepan de esta condición. Yo confío en Dios de que ellos se puedan ilustrar y realmente investiguen de la condición. Gracias por su lucha por nosotros los pacientes de Quistes de Tarlov. Dios les bendiga mucho.

  12. Buenos días a todos,soy nueva aquí y di con vosotros a raíz de la búsqueda de información sobre un bulto que tengo en la zona sacra hace ya mucho tiempo.Me lleva doliendo años,eso hizo que acabe por desconfiar de la Sanidad Pública porque en tanto tiempo no me dieron ninguna solución,termine por hacerme un seguro privado y allí me encontraron varias cosas,desde una discopatia degenerativa de la S1-L5 hasta un pinzaminto del nervio que me tenía la pierna izquierda tontita.Hasta aquí bien,me operaron el pasado noviembre y me pusieron una prótesis con 4 tornillos,2placas y injerto de hueso,mas la descompresion nerviosa,todo bien,yo feliz creyendo que el bulto era por el pinzamiento,3meses después el bulto esta de vuelta y con mas dolor que antes.Al presionarlo me duele la cadera,la pierna y el gluteo incluso se me sube hasta la espalda…que impotencia..
    Os mantendré informados pues el jueves iré a que me vea mi neurocirujano.
    Gracias y un abrazo a todos

  13. Soy de latino américa desde el 2012 tengo dolores muy fuertes me hicieron infinidad de estudios finalmente tuve que abandonar mi trabajo por este motivo los médicos nunca me dijeron cual era el motivo del dolor me hicieron varias RMN Y ENCONTRARON UN PEQUEÑO QUISTE DE TARLOV NO LE DIERON IMPORTANCIA ME MANDARON AL PSICO NUNCA FUI HACE POCO, AÑO 2015, ME HICIERON OTRA Y EL QUISTE MIDE 25MMX10MM NO SE QUE HACER QUE CONSEJO ME DARÍAN AYER SALÍ A CAMINAR NO DABA MAS CON EL DOLOR LAS PIERNAS SE ME ENTUMECEN A TODO ESTO HE TOMADO DE TODO DESDE PREGABALINA A METADONA AY DÍAS QUE NO AGUANTO

  14. Hola soy de Perú, a mi hermanita le detectaron un QT en la columna quisiera saber si ahya algun especialista en el Perú, ya que los dolores que ella presenta son muy intensos y los médicos que la revisaron no entienden y solo dicen que es un dolor producido por su imaginación, por hfavor les agradeceria cualquier información, gracias.

  15. Hola soy de Perú, a mi hermanita le detectaron un QT en la columna, los dolores que presentan son muy intensos, los médicoa que la trataron no entienden el dolor y solo dicen que es producto de su imaginación, por favor agradecere al guna información de algun especialista en el Perú. Gracias.

    1. Buen dia, Soy el Licenciado en Enfermeria Neiser Quinteros C. soy de Peru y mi madre tiene QT la cual tuve que realizar una investigacion por tema de carencia en conocimientos por parte del sistema de salud y asi poder mejorar la calidad de vida de mi familiar. El tratamiento definitivamente es paliativo y en disminuir el nivel de estres de manera holistica de la persona, lamentablemente no se cuenta con otros tipos de tratamientos como el colageno.

  16. hola buenas me llamo nieves, soy de Madrid , a mi me detectaron los QT en 2013 , es muy doloroso a pesar de que me dijeron que avía algunos que no dolían , e seguido trabajando a pesar de tanto dolor y no sabia de vuestra asociación asta hoy que me lo ha comentado el medico que me ha hecho el reconocimiento medico de la empresa , me gustaría que me mandarais todo la información que poda is sobre esta enfermedad ya que por lo que yo e leído en Internet puede tener unos efectos muy grabes , muchas gracias y estoy a vuestra disposición.

  17. Buenas tardes,
    Soy médico de Atención Primaria. Tengo un paciente que tiene lumbalgias y dolor lumbociaticos desde hace varios años.
    Ha estado en varios servicios de neurologia y neurocirugía de la SS. En el EMG se pone de manifiesto una radiculopatia a nivel de L5. Y en la RM tiene quistes de Tarlov. Los especialistas dicen que son indoloros, pero tampoco le encuentran la causa de los sintomas. Está yendo a la unidad del dolor pero tampoco le alivian. El paciente tiene mala calidad de vida por este motivo.
    Me gustaría saber que neurólogo o neurocirujano hay en Madrid que conozca el caso y lo pueda valorar. Un saludo

  18. Hola.. Soy de kathy de Paraguay tengo 33 años y me diagnosticaron QT me dicen que estos quistes no duelen que no le preste atencion. Pero yo seguía con mucho dolor y descubrieron que tenia un quiste en el ovario y que eso me producía el dolor me operaron y en teoría yo tendría que estar bien. Nada cambio el dolor en la espalda sigue igual me cuesta encontrar una posición cómoda para dormir, en la oficina me levanto cada cierto tiempo por que el dolor es inaguantable. Ya no me puedo poner mis tacos y muchas otras cosas. Lo que no entiendo es que me digan que no existe la enfermedad si yo llevo conmigo 24 hrs al día. Ojala se escuche nuestra vos. Y nos tomen en serio. Gracias y un abrazo fuerte.

  19. Soy argentina desde hace 2 días sé que todos mis dolores y padecimientos se deben al quiste de Tarlov ubicado en la zona del sacro. Efectivamente los médicos dicen que es asintomático. Después de sufrir durante 15 días terribles dolores por segunda vez en 3 meses. Quiero saber dónde puedo recurrir aquí en Argentina para que me orienten y me mediquen correctamente, cuando sufro estos ataques. También quiero saber si existe alguna asociación como la de udes . aquí. Hace unos instantes publiqué en Facebook la página de udes. quiero ayudar en lo que pueda para que esto se conozca. Que Dios nos escuche y esto sea tomado en serio por los profesionales y nos ayuden en nuestros padecimientos. Reciban un fuerte abrazo

      1. Hola judith consulta con el doctor mezzadri es especialista en la patologia .
        Ve los jueves a las 8 am planta baja sector a del htal de clinicas .

    1. En argentina en buenos aires quien trata los quistes de tarlov es el doctor mezzadri!!. El ve en el hospital de clinicas sector a jueves a las 8 de la mañana .
      Es especialista en el tema.. Exitos

  20. Buenos dias, me llamo María de los Ángeles y tengo 56 años, ayer me diagnosticarón un quiste de Tarlov bastante voluminoso a nivel S2, tras varios meses recorriendo todo tipo de médicos, osteopata, traumatologos, neurologo algunos de ellos particulares, ya que en la seguridad social el traumatologo que me atendió no tuvo la delicadeza de mandarme ni una simple radiografia, se limito a decirme que me tomara lo que yo quisiera y si me seguia doliendo fuera a ponerme una prótesis de cadera, le debo a mi médica de cabecera que verdaderamente se ha preocupado, saber que tengo el quiste, ahora por lo menos sé de donde provienen los dolores que tengo, unos dias los dolores son leves, pero hay dias que los dolores son irresistibles, me gustaria saber si podrias mandarme información sobre la asociación, y que habria que hacer para asociarse, si es posible, un saludo.

  21. Hola Maria de los Angeles:
    Has contactado con la Asociación Española de Pacientes con Quistes de Tarlov.
    Creemos que quizá te convendría más encontrar algún tipo de asociación o grupo de apoyo en tu país.
    No obstante, es probable que encuentres más información en:
    http://quistedetarlovlatinoamerica.blogspot.com/2010/11/quiste-intradural-nivel-de-s2.html http://ar.groups.yahoo.com/group/qtarlovLac/ https://www.facebook.com/pages/Grupo-de-Pacientes-de-Quistes-de-Tarlov-Latinoamerica/308278589224004

    Saludos,
    APQT

  22. Me reconozco en vuestros comentarios. En enero de 2014 comenzaron muchos dolores en la zona sacra que se irradiaba; desde antes, dolores en la espalda pero siempre dije que estos dolores eran diferentes. Este mes de abril conseguí me hiciesen un tac y poder tener, por fin, un diagnóstico de toda mi espalda. El radiólogo especificó que había “quistes de Tarlov en S1 y S2″. Mostrado todo al médico de Medicina Familiar, habló de mi espalda y obvió los quistes, “no deseas hablar de ello porque es una enfermedad rara”, le pregunto, a lo que esboza una media sonrisa…
    Pretendo un diagnóstico serio con tratamiento necesario, pero no sé dónde acudir… he sabido que en Getafe hay un especialista en QT; saben algo, me pueden ayudar?
    GRACIAS.

  23. Hola Rita,

    Siento muchísimo tu desesperación. Gracias por querer colaborar con nuestra Asociación. La unión hace la fuerza y es fundamental que los enfermos de Tarlov permanezcamos unidos.

    Te ruego que envíes un correo electrónico a consultas@@quistesdetarlov.es.

    Mis compañeras te responderán rápidamente y te informaran de todo lo que necesites.

    Muchas gracias

  24. Me gustaría ponerme en contacto con la asociación, en busca de información. Necesitamos ayuda, mi marido lleva meses viviendo, sin vivir. Los dolores son constantes y fuertes, no sabemos si puede ser la causa esta enfermedad, pero ya no sólo perdió su trabajo, sino que ya no puede salir con sus hijos a la calle, no aguanta de pie, caminando poquito tiempo y sentado no mucho, en coche conduciendo no aguanta. Camina muy encogido, los dolores del muslo y por la pierna son intensos, ya le bajan a la planta del pie y le suben hasta el cuello.Tiene hernia en la L5 y S 1, múltiples quistes radiculares de tarlov, entre otras muchas más. Nadie le da importancia a esto, estamos desesperados, lleva mucho tiempo medicandose, incluso con parches de morfina. Como podemos saber si

    1. Hola Monica,

      Son varios los pacientes que sufren ambas patologías y, desgraciadamente, muy frecuente que no se de importancia a la presencia de los Quistes de Tarlov.

      El dolor que en ocasiones producen es tremendo y produce situaciones de verdadera desesperación.

      Te ruego que envíes un correo electrónico a nuestra dirección de consultas y mis compañeras te responderan lo antes posible. La dirección es consultas@quistesdetarlov.es.

      Recibe un cordial saludo.

      Ana García

  25. Hola buenas tardes, yo escribo desde Hermosillo sonora, México, presento también quistes de tarlov, también sufro mucho dolor de espalda que ningún medicamento lo quita, dicen es psicosomático.. Para mi es triste sentirme así.

  26. He sufrido de dolores severos en la cadera y la pierna derecha durante toda mi vida desde que tengo uso de razón el primer dolor medio en el colegio a la edad de siete años, la profesora me mandó a casa y a partir de ahí he sufrido las consecuencias de lo que llaman quiste de Tarlov Y un hemangioma en L3 ,que me lo han diagnosticado de forma accidental a la edad de 52 años tras una resonancia magnética tras accidente de tráfico… Los dolores que sufre son tremendos, además de estar incapacitada para estar sentada más de 20 minuto y no puedo soportar tampoco estar de pie mucho rato de los dolores que sufro en los glúteos en la cadera y en los muslos, suelo sufrir mucho dolor también cuando cuando camino y los pasos que me han acortado.
    Recogí ayer la resonancia magnética para llevarla a la compañía de seguro espero que mi médico de cabecera le de la importancia que tiene la enfermedad que sufro .

  27. Tengo varios quistes de TArlov, el mayor de 4mm, tengo muchos dolores sobre todo cuando intento caminar me muevo en silla de ruedas, tengo poca movilidad, duermo bien, los dolores son mas de pie y cuando doy 4 pasos, tomo tramador 50 cada seis horas y lo voy soportando. Me podeis ayudar? Donde puedo. Conseguir un profesional que me de solusion al problema, en la seguridad social estoy en Lista de espera desde 8meses,yo. Me acoste bien y amaneci con poca movilidad Para caminar. Un neurocirujano privado medio el diagnóstico es cubano pero esta en Córdoba donde yo vivo. Me hA dicho, máximo 6 meses va a traer la técnica para operarnos a varias personas similares a mi. No se que hacer me podeis orientar llevo un bar co mi hija no puedo trabajar, y estamos ya a l volde de la ruina, ayudarme por favor

  28. ME ENTERE QUE TENIA QUISTE DE TARLOV MEDIANTE UNA RESONANCIA LOS MEDICOS NUNCA TOMARON EN CUENTA EL RESULTADO DEL QUISTE Y ME DIJERON QUE ESO NO ERA NADA IMPORTANTE Y AHORA UN MEDICO ESPECIALISTA ME DIJO QUE MIS DOLORES SON NADA ES COMO DECIR QUE YO LOS INVENTABA Y QUE HICIERA LO QUE QUIERA QUE NADA DE LO QUE YO HAGA . A DONDE TENGO QUE IR O LLAMAR PARA QUE ME AYUDEN

  29. Hola chicos.
    Hace unos meses comencé a notar unos dolores horribles cuando caminaba mucho en la zona de las caderas. El dolor fue a más y acudí a una traumatóloga en Barcelona quee hizo una resonancia. Resultado? “Pequeño quiste peri-radicular” derecho a nivel s1 s2. Es decir, tarlov, no? Los dolores se han intensificado significativamente. Me duelen muchísimo las piernas, las caderas y la espalda. Tanto que no duermo. La doctora me ha mandado rehabilitación. Es eficaz? Dice que si no mejoro recurriremos a infiltraciones y como última instancia a cirugía. Es ésta efectiva? Conocen algún especialista en Bcn? Tengo mutua adeslas. No puedo más. Además padezco otras dos enfermedades crónicas: celiaquía y epilepsia que sólo me afecta si no duermo. Y esto me lo impide. Ayuda por favor!!!! Gracias. Diana

  30. Los médicos de la s.s. en BCN. Me remiten al otorrino por mareos nauseas y sonidos en los oídos. Y mirando mi historia clínica veo q tengo un quiste de T. Estos síntomas pueden ser ocasionados por el Q. De T.? Se lo comento al otorrino?

  31. Hola buenas ! Estoy diagnosticado de 7 años con quistes de tarlov . Hace 4 años en el último Rmn media 22mm s2 y la verdad que de 3 semanas me empezaron los dolores y la verdad que lo estoy pasando muy mal . Dolor de espalda que baja hacia delante , déficit en urinar , dolor fuerte en el pie derecho. Pido ayuda en buscar una especialista de QT mas cerca de mi ciudad . Soy de zaragoza! Muchas gracias familia y la verdad que este es una gran problema, estamos todos luchando y esperando que nos podemos mejorar. Un gran abrazo para todos.

  32. Acaban de hacerle RMN a mi papá y tiene un QT. Tiene 76 años y hace mucho tiempo (de joven) que busca razones de su dolor. Finalmente. Quisiera tener contacto con la asociación. Somos de Bs. As. Argentina.

  33. Buenos días. Hace más de 5 años por casualidad en una RMN me diagnosticaron los quistes en ambos lados. Pero, como a muchos de aquí, me dijeron que son asintomáticos y no tienen tratamiento ni alguna intervención posible por riesgos asociados. Sin embargo, cada vez que visitó a un traumatólogo o rehabilitados, me dicen que no tengo nada. Y estoy ya aburrida, tengo dolores, a veces tan fuertes, que solo puedo ir a gatas hasta la cama y con ayuda. A veces me quedo paralizada, sin poder mover nada debajo de la cintura. Padezco muchísimas síntomas descritas, y nunca nadie encuentra un porque. A los médicos que visito les falta llamarme loca. Estoy cansada de que siempre me digan lo mismo, que no tengo nada. Y con los embarazos esto va peor.
    Vivo en A Coruña. Conocéis algún especialista a quien puedo acudir aquí?

  34. Como la gran mayoría de ustedes, llevo desde el año 2000 aproximadamente visitando a los supuestos profesionales de la medicina, con un dolor en el sacro. En el 2013 con mas síntomas añadidos ya incapacitantes e insufribles, tras muchas consultas en RM de forma casual anotan Quiste de Tarlov entre protusiones y demás. Pasa el tiempo, sigo empeorando, parece ser no tengo nada en 2015 me realizan Electromiografia con diagnostico de NP Neuropatia Pudendal, lesión del nervio de mucho tiempo de evolución (segun me han informado). Me desplazo a una consulta con el Dr. Rafael Garcia de Sola, alguien como ya sabéis que ha publicado la complejidad de los Quistes de Tarlov, por eso me declino a ir a su consulta como conocedor de esta enfermedad, con todas las pruebas obrantes en mi poder. Lo primero que me indico es que no cree en los Quistes de Tarlov y con mis pruebas, ademas de lo que ya sabia que había, aun me indico que existe una anormalidad en mi coxis que no tiene tratamiento alguno por lo efectos que pueda tener una posible cirugía quedaría peor. Sigo peregrinando, la bendita S.S y INSS indican que no tengo nada, (por supuesto solo quiero llamar la atención) algo q.

    1. Me he quedado de piedra cuando has comentado que el Dr. García de Sola no cree en los quistes de Tarlov. Pero, ¿no había dado una entrevista en la que parecía un entendido? Esto me desanima porque había pensado ir a su consulta.
      Un saludo,
      Carmen.

  35. buenas tardes
    mi marido lleva 6 meses de baja profesional por dolor de en el hueso sacro .Le vieron traumatologos y como en principio solo se ve artrosis le mandan una resonancia y los derivan al rehabilitador . Allí recogemos la resonancia y nos dicen que no saben de donde vienen los dolores ya que son constantes desde hace mas de 6 meses. Pregunta varias veces si ha tenido alguna caída y que no sabe de donde proviene el dolor. Le mandan parches de lidocaina ,y rehabilitación para que aprenda estiramientos ya que puede ser que tenga los huesos muy contraídos y si sigue con dolor lo mandaran a la clínica del dolor
    Al llegar a casa y leer el resultado de la resonancia y vemos que tiene dos quistes de tarlov empezamos a investigar por Internet.
    Nos dirigimos a nuestro medico de cabecera y le preguntamos si puede provenir los dolores de ahí. Nos comenta que no tiene importancia porque en la resonancia debe de indicar que los quistes tocan algún nervio.
    como os habrá pasado , por lo que he leído, cada vez estamos mas desmotivados y sin saber que pasos seguir.

  36. Hola me llamo Diana soy de Colombia y llevo muchos años padeciendo de estos dolores terribles a tal limite de quedar imposiblitada para caminar, afortunadamente mi.medico me mando una resonancia y el resultado de esta fue que tengo quistes de tarvol la verdad me sorprendio mucho el resultado yestoya la espera de que me vea un medico neurocirujano,escribo porque me soprendio ver la cantidad de peraonas que padecende lo mismo y saber quepuedeunoencontrar.en.un apoyo por que si hay alguien mas quesabe lo que realmente estas padeciendo, yo laboro normal pero hay dias en que el dolor es tanto que no provoca ni moverme… espero poder encontrar aqui un apoyo y con quien poder hablar de mis experiencias

  37. soy marina,vivo en rosario,argentina.hace dos meses m diagnosticaron quistes de tarlov.a partir de ahi ocupe mi tiempo libre en saber de q se trataba esta enfermedad.estoy en tratamiento ahora con fisiatria y analgesicos.sintiendome algunos dias bien y otros con mucho dolor,dentro de dos semanas m van a infiltrar,el neurocirujano m dijo q no es conveniente una cirujia,esta en mis planes ir a una consulta con el doctor mazzardi q por lo q tengo entendido es el unico en argentina q se especializa en esta enfermedad.gracias a este blog supe q no soy la unica q tiene estos sintomas q para los medicos no tienen importancia,pero la verdad q estan,q los siento dia a dia y q le voy a dar batalla como a todo lo q se m pesenta en la vida.agradeceria q m tengan en cuenta para informarme de algun tratamiento nuevo o de noticias nuevas sobre esto q nos deja muchas veces de cama,sin poder movernos.mis saludos desde argentina,muchas gracias por su ayuda q es mucha!no saben como m ayudaron!sigan adelante y cuenten conmigo siempre.

  38. Hola Juan,

    En primer lugar decirte que no vamos a llamarte ni a contestarte.

    Espero que comprendas que las personas que llevamos esta Asociación estamos pasando por una situación parecida o incluso, en ocasiones peor a la tuya, y que de una forma totalmente altruista dedicamos nuestro tiempo a intentar ayudar y dar a conocer esta patología.

    En ningún caso, vamos a permitir ni exigencias ni faltas de respeto.

    Simplemente, plantéate que hace menos de 48 horas que he salido de un quirófano y me encuentro con este mensaje.

    La Asociación Española de Pacientes con Quistes de Tarlov, se lleva por un grupo de pacientes que tienen los mismos síntomas, dolores y limitaciones que cualquiera.

    En ningún caso vamos a facilitar ningún nombre de profesionales médicos ni tampoco de fármacos.

    Os ruego respeto en vuestros comentarios.

    Juan, si has leído todos los comentarios verás que tenemos un correo de consultas. Cuando podamos te responderemos desde allí. No nos vamos a poner en contacto contigo telefónicamente.

    Os ruego el máximo respeto en vuestros comentarios.
    Un saludo

  39. Buen día en lo que pueda ser .MI NOMBRE ES JOSE Y SOY DE LIMA PERU bueno seré muy breve a mi me operaron dos veces de la columna la primera operación fue en el año 2015 donde me colocaron dos tornillos una prótesis y un injerto de hueso por el sgte diagnostico: LUMBALGIA CRÓNICA DISCOPATIA L5-S1 SINOVITIS FACETARIA L5-S1 los primeros todo bien pero despues empece otra vez a recaer con los dolores fuerte de cadera y piernas hasta el coxis me dolía para sentarme y lo peor era que siempre cuando visitaba a mi medico este me decía que todo era producto del stres y con eso me paseaba así que opte por visitar otros neurocirujanos y bueno muchos de estos Doctores se preguntaban el porque solo se utilizo dos tornillos y no cuatro como es lo normal para darle mayor soporte a mi columna …bueno hasta que llegue con un doctor que me dijo que mi estado era muy delicado y que tenia que operarme nuevamente y que por la manera como me encontraba porque ya no podía caminar esta vez tenia que colocarme seis tornillos un arco creo una prótesis y mas injerto de hueso ..y así fue… retiro los anteriores y me colocaron los nuevos y bueno se repitió la misma historia al principio todo bien con los dolores propios de la operación solo fueron los dos primeros meses porque después empece a sentir otra vez todos los dolores era como si volviera a empezar de cero como si nunca me hubieran operado y hasta hoy estoy así calambres en los muslos con ardor dolor de caderas insoportable no puedo estar mucho tiempo sentado ni parado me duele el coxis mi doctor me ordeno una RM en el mes de junio y me detectaron un QUISTE DE TARLOV EN LA S2…y bueno mi medico me dice que no es algo malo ni peligroso osea minimiza el quiste y bueno cada dia yo siento que voy empeorando el QdT en la s2 mide 1 cm de diametro y bueno ya no se que hacer …..

  40. HOLA. me hicieron una R.M , por mi artrosis y hernias. De cerebro , cervical y lumbar y en la lumbar termina con la frase : Quiste de Tarlov en S 2
    Jamas habia escuchado esto. Recien el lunes vere al traumatologo pero quisiera saber si en Buenos Aires hay algun especialista . Desde ya muchas gracias

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