When I was told in November 2020 that I had a 4.5 cm meningioma in the brain's false , I was far from imagining that less than a year later I would wake up in the resuscitation room, completely paralyzed.

At the time of the announcement, I took it rather cool, perhaps I was in denial ... It must be said that I had done this exam (a PETSCAN) for another reason: following breast cancer in 2018, we wanted to know more about a suspicious lesion spotted on a vertebra. To the vertebrae it was benign, so I was relieved. So the rest ... Yet the serious figure of the doctor who announced it to me should have leaned me up.

My loved ones were more worried than me. I met a neurologist, made MRIs, this is where we saw that a peri-lesional edema increased dangerously. Emergency appointment with a neurosurgeon who decides to intervene the following month. All this leads us to the summer of 2021.

In fact I had no physical symptoms. It was with hindsight that I understood that all my difficulties in concentrating (which had become sources of error in my professional tasks and argued terribly) were attributable to meningioma.

I worked as a hostess in a leisure club. Every evening we were doing the accounts of the day, and it had become my nightmare. The time I spent recounting, aligning figures, checking the species, there was always an error, I was getting mad. It is as if an unknown part of myself played tricks on me. I was zero, I guilty, I knew that I was observed and probably criticized by colleagues.

I was operated on at the end of August 2021 . The surgeon had warned me that I would be kept 24 hours in intensive surveillance before I send me to my room for a week at most. But I made frontal ischemia (a stroke) in the alarm clock , from the surgical procedure. Meningioma and edema were on a big vein. It was a risk but at no time had the surgeon told me about the potential consequences of the intervention.

So I wake up quadriplegic . Impossible to move, I am locked up in my body, only my hands can be mully tightening other fingers. I now think that I hid the moment when I discovered my condition, because it is impossible to remember. My unconscious has implemented a protection strategy. Post-traumatic amnesia.

The first nights, I don't sleep. The reed room looks like a jar, everything is glazed, the staff can intervene at any time if necessary. I watched the life of the night team. I stayed there for 8 days. I have a probe, a infusion, a catheter in the neck. Then I am climbed in my room. I am going to pick me up an anti-scoring mattress.

Being paralyzed is a whole life that rocks . We become dependent for everything: I am nourished; Men's caregivers rebuild me to make my toilet, wash and wipe my private parts. I'm ashamed, it's a shock.

 

Little by little my body is remobilized, but I stay weeks without being able to get up.

One night I switch from my bed trying to arrange a cushion. I scream an hour on the ground unable to move, before the nurses come to my rescue.

After a month of hospital, I go a month in a recovery establishment. I gradually find my autonomy, but I move in a walker. A physiotherapist makes me work every day. I have not found my urinary functions, I'm always afraid of peeing on it.

Then it's the return home, my companion awaits me, I arrive by ambulance. He bought a shower chair, and rented a walker to relieve me in case, because my walk remains uncertain.

I am still doing a month in a day hospital, where I go every afternoon by taxi to make occupational therapy and physiotherapist. I am also followed by a neuropsy, which helps me to identify the consequences left in my cognitive functions (immediate memory, great fatigue at concentration, reduced attention, difficulty in arguing and developing a discourse).

Then we arrive at Christmas.

During all this event I was lucky to be beautifully surrounded by my family and friends. My companion was very present and devoted.

More than a year later, at a time when I write this testimony, I have not recovered all of my motor skills (like running, jumping, sitting on the ground, writing, driving ...) and my cognitive functions (fatigue at concentration, recent faulty memory, difficult argument ...) I did not take over. I have balance problems. My pool did not find its flexibility. Long immobilization has resulted in significant muscular melting, generating cervical and back pain, I have a thickened size by abdominal fat. I lost fingers in dexterity. My sphincters did not return to normal. Shalls invisible to others, but which make me some painful daily gestures.

I was recognized unfit for work in August 2022 and licensed. My reclassification was not possible. I touch a disability pension.

I did a 3 -week cure in Lamalou les Bains in September 2022. You have to wait two to three months to see the effects. I'm going back next year.

I loved dancing in the past. But my legs and my feet no longer have enough spring. I decided to register for a living room dance class despite everything, I will try to re -mobilize my body.

My life has completely changed since the operation. I no longer work, I have no more social life, my hobbies are very limited, I have become dependent. Something broke in me. I no longer experience joy.

 

I learned incidentally during the cure by discussing with a woman, the undesirable effects of drugs such as lutenyl, including meningiomas. I had a shock. So there was an explanation for my meningioma! When I was discovered, the doctors told me that I could not date it, that I had been living with him maybe for years.

I remembered that I had taken Lotényl in premenopause for two years, to regulate my cycles . Between 49 and 51 years old. I have 59. 57 when the meningioma was discovered.

Why did the neurologists and neurosurgeonians tell me anything, did not question me about my past treatments? This subject was not mentioned. Did they know it? How is it possible that doctors specializing in the brain are not informed of the link between meningioma and certain hormonal drugs? !! What about gynecologists?

I wait for this health affair to be known to the general public. May our testimonies be used to withdraw these drugs from the market.

We must achieve the human and financial cost of the consequences of this drug for society. ALD sick leave, operations and hospitalizations, rehabilitation sessions, VSL taxis, these are colossal costs for social security. Not to mention the losses inflicted on the company that uses us if we are an employee. And if you are on your own, it's a disaster.

Human and psychological damage is not quantifiable.

For me there will always be a before August 2021.

Speedwell

October 2022