My name is Émilie, I am 37 years old and I was operated on with a left tempor-front meningioma (discovered on Androcur ) at the Rouen CHU on 07/09/2020.
Today, I tell you about my experience hoping to be able to help certain people who would be or could be in the same situation as me.
It all started following an appointment with an endocrinologist who, after having prescribed a blood test, detected a hormonal disruption. She therefore offered me a treatment to remedy it: Androcur 50mg + Provanes. This treatment also played the role of contraception , so I was removed the IUD I had at that time. I started treatment in December 2015, this made it possible to obtain better blood results, but in 2019, I noticed by reading a few articles that the Androcur could be dangerous for certain patients and to ask them some concerns.
At the next meeting with my endocrinologist, I spoke with her and asked her a few questions on this subject, she quickly dismissed my fears, I was reassured. Thereafter, it was decided to pass a compulsory MRI to all patients taking Androcur . Again, when the prescription is handed over for this examination, she swept away the doubts I could have. It is therefore serene and relaxed that I introduced myself to pass this MRI on 02/03/2020. I await the result when the radiologist calls me, he gives me an office and announces that he discovered a meningioma . However, I do not understand, I can see this big mass on the screen but tell him that it is not the right image, not the right person and asks him if it is a joke ... Then I look at him and I know that unfortunately this image is that of my head. I'm lost, asks him what I have to do for the future. He explains to me that I must quickly see my attending physician who will head to a neurologist and above all stop my treatment immediately.
I leave the laboratory in automatic mode and I do not know what to do, I stay a long time to wait in my car ... I must tell someone, my husband of course but I am in tears and remain frozen like that. I try to resume my minds and send him an SMS "I have a meningioma", nothing more. When I think about it and try to put myself in his place, I should have found another way to tell him but at the time, I am so stunned that I cannot do better. I go home, I am alone, my daughters are at school and there, everything collapses, I crack completely. I am looking on the internet (serious error on my part) to try to understand what a meningioma is, how it is treated ... I finally call my husband, he leaves his work and joins me at home. He makes me go out to drink a coffee, we discuss it but we try to stay positive and talk about it jokingly. We decide not to talk to our daughters about it at the moment.
My treating doctor receives me the same day, he takes an appointment with a neurologist the following week, he explains to me that given the size of the meningioma, an operation will surely be necessary but that it is not practiced here (I live in Le Havre) but at the CHU de Rouen (2nd bad news!).
I see my endocrinologist again the same week to inform him, she is very surprised, I am her only patient treated under Androcur to whom we discovered a meningioma (no luck for me).
During my meeting with the neurologist, he in fact informing me that I will have to have this meningioma removed and contact the Rouen University Hospital in order to obtain an appointment with a neurosurgeon. He prescribes me an anti epileptic treatment (in case he said to me), asks me if I have any symptoms, tells me about the possible risks and consequences of the operation. Apart from regular migraines, I am in perfect health. My first concern is whether it can be hereditary for my daughters (at this time, the Androcur/Meningioma correlation is not yet established). His answers reassure me for my daughters but completely scare me with regard to the operation. He tells me that it is the CHU that will contact me later to agree with an appointment.
The expectation of this contact seems endless to me , they finally call me and offer me an appointment on 03/31/2020.
But I also have to solve another problem, I have no more contraception and decide to see a midwife to have a IUD posed, she receives me quickly and I am reassured on this side (it may seem anecdotal but it is not really ...).
The meeting having been made in Rouen, my husband and I decide to put our daughters informed but in a light way, out of the question to worry them and scare them, we speak serenely and I try to answer their questions.
Now, I don't know how but I will have to warn my family, I try to find the right time but can't do it. The containment is then announced, I have no choice, I will do it by phone even if it is not the best way there is.
From that moment, I decide that I don't talk about it anymore and don't want to hear about it anymore.
Because of the confinement, my first meeting with the neurosurgeon takes place in teleconsultation. Given the health context and with the treatment of treatment, he decides to wait and have me ironed an MRI in June to check if the size of the tumor decreases , it also tells me to stop the anti epileptic treatment which has no interest in me since I have never made a epilepsy crisis.
The new MRI shows that meningioma has not evolved and I see the neurosurgeon (physically this time) on 06/23/2020. During this appointment, he decides an operation on 07/09/2020 (with a 6 -week work stoppage), he also explains the possible risks and consequences of such an operation, I listen to him but do not become aware at this moment of what can happen, my mind is elsewhere. Subsequently, I see the anesthesiologist who reiterates the explanations concerning the operation, again I do not really measure the gravity of the operation.
Despite everything, we go on vacation and enjoy as much as possible !!!
4 days before my operation, I must see the midwife so that she checks the presence and the right implementation of my IUD. She does not find it and heads me for gynecological emergencies to do an ultrasound ... And there, I am told that the IUD crossed the uterine wall and went to stay near my intestine and that only surgery can extract it ... It continues, I can't take it anymore!
Here I am explaining my situation to the gynecologist who tells me that the intervention can wait, that the IUD will no longer move and that I must first take care of meningioma, which is more urgent.
On 09/06/2020, it's D -Day, I have to go to the Rouen University Hospital, I am accompanied by my husband and my daughters. Administrative formalities, blood test, medical examination, COVID test ... I can still spend a little time with my family before they hit the road, I take advantage until the last moment.
They left, I only start to realize what happens to me, I apprehend the separation, I'm afraid for the operation , the hospital staff reassures me but it's too hard, I am already starting to crack. Until then, I was pretending to be nothing, I was strong and all of a sudden, I was unable to control myself.
The next day after a very short night and yet another betadine shower, it's time, I am taken to the operating room, I cry, I panic completely, I only think of my husband and my daughters. My alarm clock is very complicated in intensive care, I still cry (the anesthesiologist had warned me, if we fell by crying, we wake up in the same state), I have a heavy head, I have a pain, a huge dressing surrounds my head, it looks like an Easter egg. The neurosurgeon goes to see me and tells me that everything went very well .
The nights pass and look alike, I sleep little, I miss my family terribly, it's really the hardest for me, being far from my husband and my daughters, my morale is at the bottom, I want to get out of this hospital as quickly as possible, go home. My husband comes to see me every day but with each of his starts it is always harder to see him leave without me. Tuesday (the day after the operation), I was removed the probe that I had been put and I can finally get up.
I have a headache, I am tired, I can hardly open my mouth ( I have been cut a muscle in my jaw), I have my tongue numb ... My phone time I keep it for my husband and my daughters in the evening because it is very complicated for me, the simple fact of being on the phone exhausts me terribly, I can't even read ... On Wednesday, the nurse withdraw my hair and Betadine of course!) But it is impossible, I can't do it, I cannot touch this scar crossing my head. A hematoma is formed under my left eye, I am told that it is normal.
On Wednesday, when my daughters and my husband come to see me, I join them (my daughters being too young to get into the service), I can go out to get the air with them, it makes me feel good but their departure is painful again for me.
Doctors pass to see me and tell me that fatigue, pain ... All this will pass (it's a sentence that I can no longer bear so much I heard it and still continue to hear it today).
On Friday, I am taken to spend a scanner, everything is good and I can finally go home (with a 3 -month work stoppage).
My husband comes to pick me up and the return by car is a ordeal: pain, nausea, dizziness, tinnitus ... But I am happy to finally be able to find mine.
My return home did not go as well as I did not imagine it, I am at home but as if I was in the body of another, it is very special as a sensation, I thought to find my life "before", I am very far. I went in a physical and moral in great shape and I come back, five days later, completely exhausted and to be capable of anything, I feel useless.
My husband is on vacation to help me but in reality, he does not help me because I can't do anything and I quickly become unmanageable and irritable for everything and nothing ... I don't know how to explain it but I am very if not too emotional, I try to control myself in the presence of my daughters and my husband but does not always happen, it is very complicated for me, I feel decreasing. I hate that people do things for me, in my place, it's unbearable for me not to be free of my gestures even if I know that it is for my good, I can't accept it. On Thursday following my return, I am removed the staples which close the scar, 40 in all, it is very painful. Even today, I find it hard to touch it, look at it, it disgusts me ...
I continue my convalescence but do not observe any improvement, the scar hurts, I have a very headache, I bear very badly the noise, the tinnitus are permanent and I continue to be very tired.
Arrives the moment when my husband must regain the work, I am apprehensive, I am very afraid of not getting there ... Against all expectations, I go out but at the cost of extreme fatigue, I sleep a lot to recover and be roughly in good shape for my daughters and my husband. On the other hand, morally, it is free fall, I sink a little more every day, it's very hard to manage.
On the weekend following my return, I wanted to drive, accompanied by my husband and my daughters, and there, horror, new disappointment: nausea, vertigo, tinnitus, I did 10 kms and am as tired as if I had crossed France. I tell myself that it is normal, that I will try again later ...
Unfortunately, today, I still can still drive because the symptoms persist. I saw an ENT, an neurologist, made of the vestibular physiotherapist but it always remains very complicated for me to drive.
On the advice of my doctor, I am followed by a psychiatrist, it helps me a little but I still can't "digest" this opera . Before I went well and today, 10 months later, I am still convalescence and am still not at 100 % of my capacities.
At the beginning of October, I saw the gynecologist for my IUD and asked him if it was possible to undergo a ligature of the tubes ... Androcur (which served as my contraception) then the installation of my IUD who failed, I did not want any "artificial" contraception. I had to wait for the operation because the ligature of the tubes requires 4 months of compulsory reflection, the decision was hard but I already have two daughters and do not want more children so ...
My attending physician agreed for me to go back to work but half therapeutic time in March but I had my recovery operated. The operation went very well but the simple fact of returning to the hospital was very complicated for me, too many bad memories that do not fade!
Today, I have resumed my work (since the beginning of May) part -time therapeutic (until at least October) and with a postal development ... It is also very complicated to manage for me, I am normally customs agent on the ground but for the moment, I cannot be armed because my driving difficulties and fatigue could put me in danger (and my colleagues too), I am therefore currently on a position of secretariat ...
All this to tell you that I was a person in great shape, who today finds himself doing a job that does not suit him, to be always recovering and to live with enormous fatigue, ailments that do not diminish ... All that for having trusted a medicine that was supposed to heal me and who despite everything removed a part of my life. I am aware that it could have gone worse and must rejoice today for having no serious physical sequelae even if morally, I find it difficult to do with it and that physically I am not yet handed over.
What I just did by giving you my story, I might have had to do it before because I realize that it did me good to put words on all that even if I had some difficulties in evoking certain passages ...
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