A year ago, I was in the operating room surrounded by two surgeons who did an exceptional job in my head. I was operated by Professor Jouanneau and Professor Tringali at the Bron neurological hospital. I thank them very much for my care since the start of the discovery of my meningioma and for the great success of this operation.
I tell you my story, hoping that these few lines will be able to help women who will live this delicate ordeal.
Je souffre d’endométriose depuis 2005, après trois cœlioscopies, on me met sous progestatif, le Lutéran. Je prends ce traitement pendant 10 ans, de 2009 à 2019. Efficace, ce médicament m’a permis de ne plus avoir à subir une cœlioscopie tous les ans et à calmer la progression de mes kystes d’endométriose aux ovaires. Mais j’étais loin d’imaginer que pendant ce temps, un méningiome était en train de se former dans ma tête. Je suis passée par plusieurs symptômes que l’on mettait sous d’autres raisons médicales, j’avais des problèmes aux cervicales mais les radios du cou ne donnaient rien, j’ai fait un nombre infini de séances de kiné, sans gros succès pour mes douleurs au cou et les maux de tête liés. J’avais également des acouphènes mais comme j’avais une perforation du tympan depuis mes 20 ans, les médecins mettaient ça sur le compte de ce problème à l’oreille.
Then more recently, I had some dizziness, there, I started to tell myself that there must have been something else. In addition I had heard of the concerns that we can have with the treatments based on progestins, I am starting to talk about it to the medical profession but I am told that I take luteran that 10 days a month and that there is nothing to worry about, but the sensations of vertigo increase and I go to my general practitioner, with the well stuck neck again, it prescribes me an MRI Cerebral because I am worried in particular with my capture of Lotéran and what we start to discover, he accepts and I have the prescription for the two MRIs, it was at the end of November 2019.
A little waiting for the meetings and on January 2, 2020, I pass my MRI of the cervicals which does not detect anything at all, my neck is fine. I stress, I start to really worry and on January 8, 2020, I go to pass my brain MRI accompanied by my husband, I am afraid of the result but I try not to panic in advance. My MRI passed, (the first time, this kind of examination is quite difficult, after we get used to it and we find techniques to help us), I expect in the examination room the arrival of the radiologist in order to have my result, difficult to remain relaxed. It happens and announces that there is something abnormal, it uses the word brain injury (which passes better than tumor) which is towards the ear, it thinks of a neuroma or a meningiom, in any case something in this style, he tells me that it takes place and that it is still quite important 5.5 cm! I react as I can, I think immediately of asking if it is cancer, he tells me not this kind of lesion, phew I breathe a little but I have this thing in the head, towards the ear canal and which is quite large, it will be necessary can be operated, but how we operate this kind of thing, we pass by the ear, by the head? He talks to me about an incision behind the ear, it is the ENT that takes care of that, for him it is more a neuroma, that is to say a lesion on the auditory nerve.
Here I go from the room completely stunned by what I have just learned, I head for the secretariat and I join my husband and I start to explain everything to him. The return journey was quite silent for me, I was thinking about what was happening to myself. I had anticipated an appointment with my general practitioner the same evening, I had to foresee a bad result. At the end of the day, I go home and show him my radios, he is himself very surprised, he asks me if we were already aware of this neuroma? Ah no, it's new, it's the news of the day that I have to digest, that I accept and that I understand, and I was far from having all the information. I look at him and I tell him that I am unable to go to work tomorrow with this news that has just come across me, I am a teacher in primary school, I saw myself already crying in front of my students, he understands and stops for 3 weeks while I go to see an ENT that he advises me in Lyon. In addition, he tells me but we do not necessarily operate, that if necessary, then I cling to that.
The next day, I made my phone call and I was able to get an appointment fairly quickly following a cancellation, on January 17, 2020, I have an appointment with Professor Tringali, ENT at the Lyon Sud hospital. Lots of things run in my head, but what exactly is this lesion? With everything I hear about the progestins, I had stopped my luteran treatment in December 2019, I had to feel something coming. Until January 17, I want as I can try to reassure myself and tell myself that one may not be done, in addition I had heard that when the progestins were stopped, the lesions could decrease. On January 17, 2020, I see Professor Tringali, he confirmed to me that it is indeed a meningioma and not a neuroma and that given the size I will have to operate, he sends me to see Professor Jouanneau, neurosurgeon at the Bron neurological hospital and prescribed me veducation sessions because by training before the operation we get back better after. He obviously tells me to stop the Lotéran. I go out with answers that become more and more clear, I have a meningioma in my head on the left side, I am always accompanied by my husband, he followed me with each exam and each appointment, he was very great support. I remember going out before I hit the road, I call the physiotherapists, I was given a list of physiotherapy specializing in vestibular rehabilitation, I try calls, or I have responders, I leave messages, I have the physiotherapist live, I start to explain and I can't get to my sentences, I start to cry, my husband takes the hand, operation, it's too hard.
We come home, we teach this to my daughters, 18 and 13 years old, with as much zenitude as possible, I try not to show too much my concern so as not to stress them too much. My husband is rather optimistic, it helped me throughout my medical career.
Le 17 février 2020, rendez-vous avec le professeur Jouanneau, j’ai fait des recherches, on fait ce que l’on peut dans ces cas là, mais attention on trouve de tout sur internet, j’essayais de ne pas trop m’égarer et prendre des sites médicalisés et j’ai vu qu’il y avait des traitements à base de rayons, cela évite que l’on ouvre la tête. J’ai une liste de questions. Le professeur m’explique clairement ce qu’il m’arrive, c’est bien un méningiome dû à la prise sur long terme du Lutéran et un nouveau protocole précise qu ‘il ne faut pas opérer tout de suite (sauf si symptômes graves), moi j’ai la chance si on peut dire d’avoir des symptômes légers, raideurs au cou, quelques maux de tête, acouphènes et de légers vertiges, sans oublier la fatigue. Il est donc conseillé d’attendre une période de 6 mois avant de refaire une IRM et de contrôler si avec l’arrêt du progestatif, le méningiome peut réduire. Pour les rayons, le professeur me dit non ce n’est pas possible votre méningiome est trop important, pour moi c’est plutôt l’opération mais on se laisse une chance pour voir si le méningiome commence à réduire avec l’arrêt du traitement progestatif.
Je repars un peu soulagée à l’idée de repousser cette opération et même dans ma tête je me motive et je me dis que le méningiome va réduire et que je vais éviter une opération. Prochaine IRM prévue le 10 juin, en attendant pour gérer toute cette situation, je me fais suivre par une hypnothérapeute qui m’a été d’une aide très importante. Le professeur Jouanneau m’avait dit lors de la consultation de ne plus conduire car je prenais encore la voiture, je ne comprenais pas j’y arrivais encore, mais très rapidement j’ai bien compris pourquoi il m’avait dit cela, début mars 2020, j’ai commencé à avoir d’autres sensations de vertiges, ma vue se troublait pendant un court instant et revenait, effectivement j’ai arrêté de conduire.
On June 10, 2020, Im of control, I hope but no decrease, meningioma is stable.
On June 19, 2020, a new meeting to Professor Jouanneau, he left another 4 months of waiting, because there was no decrease but no increase, with the stop of Lotéran sometimes it is longer, I leave still relieved, I still repel this operation.
New MRI control on October 14, 2020 and nothing, still no decrease, I am desperate and I start to realize that it will most certainly have to go through the operation.
On October 26, 2020, another meeting with the neurosurgeon and there the final verdict falls, my meningioma does not reduce despite the treatment of treatment, it is necessary to operate to remove it if not after a while we will no longer be able to control it, no choice, you have to go. As we are in the middle of a covid, the professor lets the end of the year and program in early January an appointment with the anesthesiologist and another with him in order to analyze another MRI more advanced than I have to spend on December 17, 2020.
The year 2020, well-loaded in emotions turns the page to give way to the year 2021, on January 4, go to the anesthesiologist who explains to me how it will happen, then go to Professor Jouanneau who also explains to me but by adapting perfectly to what I feel and trying not to stress and rather reassure me. It is a long operation that awaits me, heavy and difficult but I have no choice, you have to go. I am waiting for a date for February 2021. I am always followed by my hypnotherapist with whom I exchange and I learn hypnosis techniques to prepare myself. My family and friends also support me, my daughters hold out but it's difficult. I have never really cried, not much cracked, I held up, how did I do, I think we keep the pace as we can, we hang.
Then I receive the convocation, the date is scheduled for February 3, 2021. Last intensive preparation, on February 1 at the hypnotherapist, PCR test, for an entrance to the Bron neurological hospital on February 2, 2021, the suitcase is ready. On the morning of the 2nd, big kisses to girls before they go to school but it's hard and tears are there, I hold up, I reassure them but inside myself I am as anxious. And there, an hour before leaving for the hospital, we still do not understand, the phone rings, it is the laboratory which came to teach me that I am positive at the COVIR! I do not believe it, I do not go out with my dizziness, I remain only on my sofa, my husband and my daughters have nothing, so quickly we call the hospital, we warn them, they think and they tell me we will see and we remind you. I am waiting for, what will happen, I am ready for the operation, I prepared myself well, but I apparently the covid, I stress, I panic, I wait. Then I am reminded and I am told that as I am not in an emergency for the operation, we will postpone it. I am reassured because in the end I was afraid of having to manage the covid and my operation. We recall girls at school, everyone is home, we are confined!
I remained asymptomatic, my daughters and my husband have always been negative, we didn't understand anything, but hey I took this period as a respite while waiting for the new date. I was exchanging with Professor Jouanneau by email, who understood well and let my family pass this period of covid well and I was set another date when everything had returned to order. New date, March 3, 2021 for the intervention. A month later we start again, goodbye to the girls on the morning of the 2nd, it happens better than the first time, as if we were better prepared, that we needed more time. This time a negative PCR test and it is the departure for the Bron Hospital with my husband. I arrive for 11:30 am, after my registration and blood test, a lot of emotion, I crack, I cry, I realize that I am there, off we go for the operation tomorrow, I am offered a meal, my husband must wait outside in the park, Covid obliges, he is not allowed to enter the room but I can join him afternoon to spend time together while waiting for me. Then I am called I have to go back to my room, I say goodbye to my husband, he hit the road to join the girls and I join my room. The last exams take place, the last explanations, I no longer cry, I feel ready, no choice you have to take this meningioma. At the end of the day, Professor Jouanneau goes to see me with his team and gives me explanations for tomorrow, the operation will be long, it will last the day, it will be difficult but I have confidence tells me - he and I answer him if you have confidence so I have confidence too. I end the day by communicating long moments with my husband and my daughters, we made a family account for the occasion on WhatsApp, then we say good night goodbye and see you soon as soon as I could communicate with them.
Le mercredi 3 mars 2021 à 5 h 30, réveil et préparation, départ pour le bloc à 7 h , je suis le rythme, je repense à tout ce que j’ai appris avec mon hypnothérapeute et je l’applique à la lettre. Arrivée au bloc, je me mets en mode hypnose, yeux fermés, je me prépare, puis vient l’anesthésiste et c’est parti pour un grand repos, on m’a endormie à 7 h 30 et je suis remontée en salle de réveil à 21 h 30 . Une journée d’opération entourée par le professeur Jouanneau assisté du professeur Tringali. J’ai subi une exérèse par pétrectomie combinée de mon volumineux méningiome de l’angle ponto-cérébelleux gauche.
The operation went very well, the two surgeons did a remarkable job, thank you again! After the operation I stayed at the bottom to be followed more closely and after a scanner which showed that everything was fine, I went back to my room on Thursday evening. I don't have too many memories of these moments, a few, because I slept a lot. At the beginning I had concerns to communicate, my words were not well placed, my bizarre sentences, I managed to send messages to my family but it was not very clear and rather confused, which worried them but my neurosurgeon quickly reassured my husband by saying that the operation has taken place recently and that it is necessary, it will be, it will trust. Indeed, I found my normal language very quickly, my scar at the head, from the lower ear to the temple has 30 staples. I was shaved only 2 centimeters of hair around the scar, it's very discreet. I don't have too much pain in the end, stiffness behind the head, especially at night, but with the medicines it's okay. I wear a compression bandage around my head. I'm starting to get up on Saturday, I don't go very far to start. I rest a lot, I am not entitled to visits, the covid is still there! When I do not sleep, I watch TV, speak a little with my neighborhood neighbor, read is still complicated for the moment, I color, I exchange many sms with my loved ones and especially I appreciate the fact that this operation has passed, it is behind me, now I go backwards, I breathe, even if I know that the path will be long, but I took a turn, I go after.
Une petite baisse de tension me provoque une petite chute après ma toilette mais je repars. Tout me prend plus de temps, je vais doucement. Je travaille avec le kiné pour la marche et l’équilibre, l’orthophoniste pour faire des mouvements avec ma mâchoire, au début je mange tout mouliné pour ne pas risquer des fausses routes, je remâche progressivement. Mes contrôles à l’hôpital se passent bien, un nouveau scanner montre que tout va bien, ma cicatrice se referme normalement, alors le 16 mars 2021, je suis autorisée à sortir et retourner chez moi. Le matin même on finit de m’enlever les agrafes, on m’explique les soins à faire pour poursuivre ma convalescence. J’ai évité la maison de repos car il y aura de la présence chez moi, je ne serai pas seule. Mon mari vient me chercher vers 11 h 30 et on prend la route, quel plaisir de rentrer chez soi , revoir mes filles. Mon retour s’est bien passé, mise en place des infirmières pour les soins de la cicatrice une fois par jour, des séances de kiné pour se remettre de l’opération, se re muscler, j’ai perdu 5kilos depuis et faire travailler l’équilibre mais comme mon nerf vestibulaire n’a pas été touché pendant l’opération, mon équilibre est plutôt pas mal. Des séances d’orthophonie pour la parole, la mastication et la mémoire, j’avais l’impression d’avoir perdu des mots, je les cherchais mais ils ne revenaient pas toujours, alors avec l’entraînement de l’orthophoniste tout cela est rentré dans l’ordre et avec le temps j’ai réappris à faire de mieux en mieux, j’essayais de faire des petites marches, d’abord autour de ma maison, puis progressivement un peu plus loin. J’ai repris petit à petit les tâches de la vie quotidienne, à mon rythme et dès que la fatigue se faisait ressentir le canapé n’était jamais trop loin !
Mais surtout plus de vertige, par contre les acouphènes pas les mêmes qu’avant mais ils sont toujours présents, j’apprends à les gérer, mon neurochirurgien me l’avait dit. Des raideurs dans la mâchoire m’embêtent, c’est le nerf trijumeau et les branches sensitives qui réagissent à l’opération, j’apprends aussi à faire avec et je me contente en me disant que les séquelles auraient pu être plus importantes.
Four months after post -operative control MRI, June 21, 2021. On June 25, I returned to see Professor Jouanneau. He takes the time to explain me the result of the operation with the help of the control MRI, he removed with Professor Tringali, a very large part of the meningioma even more than expected, the result is very encouraging. He shows us (my husband is always with me) the old MRI and the new one, and there we can clearly see the clear decrease in meningioma, there remains a residue but very modest compared to what it was at the beginning, everything could not be removed because the part on the blood vessels could not be touched. On the other hand, a second small meningioma is seen behind the skull, to be controlled but it is small (12mm). Given the great success of the intervention, it is not necessary to make rays for the moment (to dry the end it remains) we will wait for the next control. I ask all my questions and I leave very reassured. I know that it will take a very regular follow -up and that may one day I should make shelves if the operated meningioma evolves or the other, this little second, but I have positive and since I learned to live in the present, you have to take advantage of every moment.
De tout cela un an après, je garde quelques instabilités lorsque je suis fatiguée, quelques acouphènes mais faibles, des raideurs dans la mâchoire du côté gauche comme lorsque l’on sort de chez le dentiste après une anesthésie, c’est ce qui me gêne le plus pour l’instant , mais ces effets secondaires vont peut être encore s’atténuer petit à petit avec le temps. Par contre mon oreille gauche n’entend plus du tout car très souvent comme me l’avait précisé mon neurochirurgien le nerf auditif est très fragile et ne repart pas après l’opération. Au début j’étais gênée par cette perte d’audition, mais mon oreille droite a compensé et je me débrouille très bien maintenant, je ne fais quasiment plus répéter sauf s’il y a beaucoup de bruits en même temps ! Donc pas besoin d’appareil auditif pour l’instant, peut être plus tard, à voir.
J’ai pu reconduire en juillet 2021 après l’accord d ‘un médecin expert, quel plaisir de reprendre la route et mon autonomie ! Pour le travail, j’ai eu beaucoup de fatigue, mais depuis février 2022, la fatigue s’atténue et je tiens mieux mes journées , alors à la rentrée prochaine, en septembre 2022, je vais pouvoir retrouver mes élèves à l’école en mi temps thérapeutique pour commencer, doucement mais sûrement !
Je commence à penser au prochain contrôle, j’ai pris mes rendez vous le 20 juin 2022 IRM et le 29 juin , rendez vous avec le professeur Jouanneau. J’espère que tout ira bien et que tout se passe bien dans ma tête, à suivre, mais je reste optimiste et dans le présent, on est aujourd’hui pour commencer ! Je voudrais dire à toutes les femmes qui vivent ce genre d’opération, que je pense bien à elles, il faut se faire accompagner aux rendez vous dans la mesure du possible car on ne retient pas toujours tout lorsque l’on apprend des mauvaises nouvelles, il faut aussi ne pas hésiter à trouver de l’aide, soit l’hypnose, la sophrologie, la relaxation, parler avec un psychologue, tout ce que l’on peut trouver et qui nous convient pour ne pas rester seule à broyer du noir. Et garder espoir, les progrès en neurochirurgie sont énormes, les professeurs réalisent des opérations importantes, ils sont EXTRAORDINAIRES et on peut s’en sortir et aller mieux.
Courage to all
Nathalie
