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.
I have been suffering from endometriosis since 2005, after three laparoscopies, I am put in progestogen, the luteran. I take this treatment for 10 years, from 2009 to 2019. Effective, this medication allowed me to no longer have a laparoscopy every year and to calm the progress of my endometriosis cysts in the ovaries. But I was far from imagining that during this time, a meningioma was forming in my head. I went through several symptoms that were put in other medical reasons, I had cervical problems but the radios of the neck gave nothing, I made an infinite number of physiotherapy, without big success for my neck pain and the headache. I also had tinnitus but since I had a tympanum perforation since I was 20 years old, doctors put it on the account of this problem in the ear.
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.
On February 17, 2020, go to Professor Jouanneau, I did research, we can do what we can in these cases, but beware we find everything on the internet, I was trying not to get too lost and take medical sites and I saw that there were radius treatments, it prevents us from opening your head. I have a list of questions. The professor clearly explains to me what happens to me, it is indeed a meningioma due to the long -term taking of the luteran and a new protocol specifies that one should not operate immediately (unless serious symptoms) , I am lucky if you can say to have light symptoms, stiffness on the neck, a few headaches, tinnitus and light dizziness. It is therefore advisable to wait a period of 6 months before redoing an MRI and control if with the stop of the progestin, the meningioma can reduce. For the shelves, the professor says no it is not possible your meningioma is too important, for me it is rather the operation but we give ourselves a chance to see if the meningioma begins to reduce with the stop of the progestogy treatment.
I leave a little relieved at the idea of repelling this operation and even in my head I motivate myself and I tell myself that the meningioma will reduce and that I will avoid an operation. Next MRI scheduled for June 10, while waiting to manage this whole situation, I am followed by a hypnotherapist who was very important to me. Professor Jouanneau had told me during the consultation to no longer drive because I still took the car, I did not understand I could still, but very quickly I understood why he had told me that, in early March 2020, I started to have other sensations of vertigo, my view was disturbed for a short time and returned, indeed I stopped driving.
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.
Wednesday March 3, 2021 at 5:30 a.m., alarm clock and preparation, departure for the block at 7 a.m., I am the pace, I think back to everything I learned with my hypnotherapist and I apply it to the letter. Arriving at the block, I put myself in hypnosis mode, closed eyes, I prepare, then comes the anesthesiologist and off we go for a big rest, I was fell asleep at 7:30 a.m. and I went back to the alarm clock at 9:30 p.m. An operation day surrounded by Professor Jouanneau assisted by Professor Tringali. I underwent an excision by pétrectomy combined with my voluminous meningioma of the left ponto-cerebellar angle.
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.
A small drop in tension causes me a small fall after my toilet but I leave. Everything takes me more time, I'm going slowly . I work with the physiotherapist for walking and balance, the speech therapist to make movements with my jaw, at the beginning I eat everything touted so as not to risk false roads, I gradually go off. My controls in the hospital go well, a new scanner shows that everything is fine, my scar closes normally, then on March 16, 2021, I am allowed to go out and return home. The same morning I finished taking off the staples, I was explained to me the care to continue my convalescence. I avoided the rest house because there will be presence at home, I will not be alone. My husband picks me up around 11:30 a.m. and we hit the road, what a pleasure to go home, see my daughters again. My return went well, set up nurses for the scar career once a day, physiotherapy sessions to recover from the operation, re -build up, I have lost 5kilos since and to work the balance but as my vestibular nerve was not affected during the operation, my balance is pretty good. Speech sessions for speech, chewing and memory, I had the impression of having lost words, I was looking for them but they did not always come back, so with the training of the speech therapist all this went to order and with time I reappected to do better and better, I was trying to do small steps, first around my house, then gradually a little further. I gradually resumed the tasks of daily life, at my own pace and as soon as fatigue was felt the sofa was never too far!
But above all more vertigo, on the other hand the tinnitus not the same as before but they are always present, I learn to manage them, my neurosurgeon had told me . Straid in the jaw bother me, it is the trigler nerve and the sensory branches that react to the operation, I also learn to do with it and I am content to tell myself that the sequelae could have been more important.
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.
Of all this a year later, I keep some instability when I am tired, some tinnitus but weak, stiffness in the jaw on the left side as when you leave the dentist after an anesthesia, this is what bothers me most for the moment, but these side effects may still diminish gradually over time. On the other hand my left ear no longer hears at all because very often as my neurosurgeon had told me the hearing nerve is very fragile and does not leave after the operation. At the beginning I was embarrassed by this hearing loss, but my right ear compensated and I manage very well now, I hardly repeat it unless there are a lot of noises at the same time! So no need for hearing aid for now, maybe later, to see.
I was able to renew in July 2021 after the agreement of an expert doctor, what a pleasure to hit the road and my autonomy! For work, I had a lot of fatigue, but since February 2022, fatigue has fade and I have better my days, so at the start of the next school year, in September 2022, I will be able to find my students at school in half time to start, slowly but surely!
I start to think of the next control, I made my appointments on June 20, 2022 MRI and June 29, appointment with Professor Jouanneau. I hope that everything will be fine and that everything is going well in my head, to follow, but I remain optimistic and in the present, we are today to start! I would like to say to all women who live this kind of operation, which I think of them, you have to be accompanied by the appointments as much as possible because you do not always retain everything when you learn bad news, you also have to hesitate to find help, hypnosis, sophrology, relaxation, speak with a psychologist, everything that can be found to be to be black. And keep hope, progress in neurosurgery is enormous, the teachers carry out important operations, they are extraordinary and we can get out of it and get better.
Courage to all
Nathalie
