Le syndrome du Pyramidale...

 

                   Qu'est ce que c'est cette chose qui me fait terriblement mal...

    En voici mon récit...

 

 

 

          1999, lorsqu’une chose inexpliquée m’est arrivée. Je n’arrivais plus à m’allonger normalement. Une                     douleurdorsale excessive s’installait.

Par exemple, lorsque j’étais en voiture et qu’il y avait un virage, un endroit au niveau de mon dos se coinçait, se bloquait.. et d’un  coup, se débloquait..  c’était vraiment  très bizarre…il y a t’il un lien avec ce que je vais tenter d’expliquer..

 

Septembre se déroula normalement, jusqu'à ce qu’un soir, alors que je cirais mon parquet, j’ai senti une douleur très forte en avançant ma jambe alors je me suis assise…Celle-ci c’est passée au bout d’1 heure environ.

 

Quelques jours plus tard, je m’assoie sur ma chaise et en me relevant, j’ai eu du mal à avancer. Je me suis appuyée sur ma jambe, une douleur très forte est survenue.. Je sentais comme une gêne, je tentais d’avancer, en vain, ce n’étais pas possible. J’avais beaucoup trop mal, alors je força sur ma jambe droite, puis un crac venant de l’intérieur au niveau de la hanche, dont je n’arrive pas à expliquer exactement l’endroit, était comme un accrochage.. puis j’ai pu  repartir normalement au bout de quelques minutes. Au fil du temps, des douleurs très intenses sont survenues de jour comme de nuit jusqu’à me réveiller…

 

A chaque effort, marcher, me tenir debout, faire du ménage.. des douleurs intenses apparaissaient, je ne pouvais plus avancer ni même mettre ma jambe au sol et régulièrement un tiraillement survenait et je devais m’appuyer sur celle-ci pour que cela se décoince  afin de  pouvoir marcher.

De Septembre à Décembre ces douleurs ne disparaissaient pas alors je décide de consulter un orthopédiste.

 

Il me consulte, et s’aperçois des ressauts au niveau facia lata. Il prescrivis une intervention chirurgicale.

 

Je me fis donc hospitaliser au mois de décembre 1999.

 

Quelques jours après l’opération, j’avais des séances de kiné à la polyclinique .Je ressentais toujours ce fameux crac. Je ne marchais toujours pas normalement. Je suis donc rentrée à mon domicile et m’aperçue que les douleurs étaient toujours présentent et de plus en plus intenses .

 

Je consulta de nouveau le chirurgien qui ne comprenait pas. Il voyait un problème mécanique sans pouvoir le déceler. Des scanners, des IRM ayant été fais, les images ne parlaient pas. Cependant, je souffrais toujours. Cela continuait, je ne pouvais pas, par moment poser ma jambe à terre ni même avancer. Lorsque je faisais le moindre effort, trop de marche, faire mon ménage etc.…les douleurs étaient amplifiées…je ne pouvais plus du tout poser mes pieds à terre.

 

Les mois passèrent, l’orthopédiste à perdu courage face à l’incompréhension de mes douleurs, ne trouvant pas le problème mécanique.

Lorsque je rentrais du travail, je rampais pour accéder à mon train.

Une autre fois, j’étais dehors, je marchais vers le bus ne pouvant plus avancer  tellement j’avais mal et n’arrivais plus à poser le pied à terre.

Un jeune homme est venu vers moi, me voyant pleurer et souffrir, il m’a pris dans ses bras et m’a transporté dans le bus.

 

Suite à cela, mon médecin m’a mis en arrêt maladie, ne pouvant plus reprendre un tel risque et rester face à la peur de ne plus pouvoir marcher.

 

Mon médecin généraliste, me voyant complètement déprimée et ne voulant pas me laisser dans une telle situation, m’a donc dirigé à l’hôpital Cochin.

 

J’ai pris rendez vous  avec un professeur de l’hôpital  au mois de Mai

( Mr le Professeur Vinh). Je lui ai expliqué mon problème et lui ai remis mes scanners, IRM...

 

Il en pris connaissance et remarqua un souci…il m’explique qu’il y a un problème et qu’il faut avoir de très bon yeux pour diagnostiquer cette anomalie. Il me diagnostique le Syndrome du bourrelet cotyloïdien avec ressauts des deux hanches et anomalie des sacro-iliaques, anomalie coxo-fémoral.. Il me confirma que cette maladie était évolutive…

 

Je ne comprends pas mais suis enfin soulagée de savoir pourquoi je n’arrivais pas, par moment, à ne plus poser pied par terre …

 

Quelques semaines plus tard, je le contacte de nouveau pour mieux comprendre ma maladie et comment celle-ci pouvait évoluer .Il me confirma l’évolution mais ne sais pas jusqu’où elle pourra aller. Je lui demande si je devrais finir en fauteuil roulant. Il ne sut me répondre…La seule chose qu’il puisse me dire est que c’était évolutif…Il me proposa de procéder à une intervention via caméra et m’orientas vers l’un de ses confrères, le Docteur Ouaknine.

 

J’entre en consultation avec celui-ci  et il décide de faire réunir le staff afin de discuter de ce problème.

 

Ils me proposèrent une opération du psoas pensant que la cause de mes douleurs provenait de là. Ne comprenant toujours pas, je demande des explications sur le fait que ce soit le psoas.

Je ne veux pas pratiquer la moindre intervention chirurgical et je m’oriente à l’ hôpital Foch auprès d’un Professeur très renommé…(Professeur Kouvalchouck).

 

Il me conseilla une intervention du psoas. Je fus de nouveau hospitalisée en Avril 2001.

 

J’accepte de me faire opérer.

 

Ce fut une intervention très pénible, près de Paris, loin de mes proches .

 

Je fus en convalescence pendant 4 semaines.

 

Aujourd’hui, les douleurs continuent et je compris de nouveau que ce n’étais pas la cause directe du psoas.

Depuis cette opération, je n’ai plus eu aucune intervention et vis toujours avec mes douleurs très très fortes.

 

J’ai ensuite demandé à être suivie par un centre anti-douleur à l’hôpital de Nemours avec le Docteur Sorel  qui a diagnostiqué le syndrome du pyramidale avec dysplasie de hanche débutante.

De nouveau, j’ai été hospitalisée en Juin 2006 pendant plusieurs mois et une fois par semaine j’ai subie des infiltrations qui,  sur le coup me soulageaient, mais à moyen terme ne parvenaient pas à me guérir.

 

De ce fait, j’ai pratiqué de la rééducation sans obtenir aucun résultat…J’y ai même fais de la natation pendant 1 heure à plusieurs reprises mais suite à cela, 2 à 3 heures après, je ne pouvais plus du tout mettre les pieds par terre. Une énorme douleur de compression au niveau du haut de mes jambes et de mes hanches sont survenues dont je ne peux décrire …

 

Aujourd’hui, je ne peux toujours plus marcher, ni même poser les pieds par terre dès le moindre effort. J’ai toujours des douleurs pour lesquelles je souffre excessivement…

 

Les médecins, ne sachant plus quoi prescrire pour atténuer mes douleurs, me prescrivent de la morphine à libération immédiate et prolongée que je gère moi même. Les journées sont parfois difficiles à vivre et arrivé à une certaine heure, ces douleurs sont épouvantables, surtout en fin de journée. Après avoir beaucoup marcher la journée après mon travail, je rentre chez moi avec très souvent des difficultés à aller jusqu'à mon lit tellement je souffre.

 

Je calcule mes pas toute la journée..  parfois j’aimerais être comme tout le monde, sortir, faire les magasins, ne pas être freinée par ces douleurs…

Lorsque je me force à le faire, les douleurs sont très intenses…même si je ne m’écoute pas et que je souffre énormément, je ne peux plus avancer, alors je laisse le caddie et rentre à mon domicile.

 

Je continue malgré tout à gérer mon travail et les douleurs au quotidien. Certains soirs sont très difficiles car lorsque je suis en crise, pour me soulager, je prends mes médicaments mais la morphine m’empêche de dormir. Alors régulièrement je pars au travail, en étant dans une extrême fatigue …c’est très éprouvant mais je dois tout de même continuer à vivre même si bien souvent, après n’avoir pas dormi plusieurs nuits complètes, je suis épuisée.

 

Certaines personnes de mon entourage ne le comprennent pas…

 

Mon plus grand souhait serait de pouvoir vivre comme tout un chacun, être guérie et soulagée, ne plus souffrir, ne plus compter mes pas, pouvoir sortir, pouvoir vivre…mais pour l’instant je ne vois pas d’issue...

 

Je garde  espoir…Un jour sans doute …

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