Here, my name is Kheira, I am 50 years old, 3 children.

J’ai pris du Luteran 10 mg pendant plus de dix ans, car j’avais mon cycle menstruel très irrégulier et une acné très sévère depuis mon adolescence, et le Luteran m’a été prescrit après l’accouchement de mon 3e enfant (en 2006), par mon gynécologue.

I was diagnosed: in December 2018 (following the realization of an MRI, prescribed by my attending physician) before the appearance of certain alarming symptoms in November 2018: -

– décharge électrique ressenti à la tempe droite.
– un état vertigineux en constance.
– baisse de l’acuité visuelle, mal évalué du fait que j’avais déjà des séquelles au niveau oculaire, toujours en lien avec ma 1ère intoxication médicamenteuse.
– de plus en plus de nausées.
– violents maux de tête de plus en plus fréquent, et intenses, qui n’avaient rien à voir avec les migraines que j’avais connu jusque là.

– et surtout, des troubles de la mémoire (j’ai évité par 2 fois, grâce à l’intervention de mes proches; 2 incendies, en Novembre puis en Décembre 2018).
– sans oublier les troubles de l’humeur moment d’angoisse puis, un état de déprime total.

Very very difficult moment, because I did not appear in front of those around me, for fear of worrying them more than it was already.

I tried to reassure them permanently.

MRI has highlighted 3 meningiomas, including a voluminous (4.6cm), located at the right temple, operated in January 2019, as well as a very important brain edema.

Le jour où le diagnostic à été posé en Décembre 2018, j’ai reçu comme un énorme coup de massue, comme une bombe qui vient d’éclater devant moi. Je suis restée sans réactions, cela m’a été incompréhensible sur le moment.

Everything was jostling in my head.

I was unable to ask the radiologist to explain this diagnosis to me as anger suddenly invaded me. I no longer listened, I was no longer heard.

The one and only question that came back to me at this moment, then the following days and weeks is: how with regular follow -up with a neurologist, and other specialists in the medical profession that I had consulted, we can missed that …… ..

Then I collapsed in "tears", a luxury for me, (although I no longer secrete, due to Stevens Johnson syndrome), on the radiologist's desk.

Je me suis sentie très seule devant cette incompréhension et complètement perdue et surtout TRÈS CHOQUÉE.

I had only retained the word tumors. I didn't know what meningiomas were at that time.

I went home, despite myself.

I informed my companion and my children with a lot of media and hesitation. They remained dazed and then struck.

How to explain to them, what me, for lack of information, I could not understand, myself. Then I remember sending waltzing the MRI through my living room.

I was isolated from everyone for some time.

I was taken care of at first the next day, by a neurosurgeon, in Tours, the professor saw (my doctor attending was very reactive in front of the emergency, and contacted the neurosurgeon the same day, not to mention that he asked at the same time, 100%care (ALD).)

The neurosurgeon who received me asked me several questions about the treatments I took.

Elle m’a annoncé que la prise du Lutéran a été le facteur déclencheur, qui a favorisé, nourri et alimenté l’apparition de méningiomes et que plus la prise de ce traitement est prolongée, et plus ils évoluent en masse, d’où la taille 4,6cm lorsqu’il a été mis en évidence dans mon cas.

So immediate stop of the Lotéran.

Then she explains the progress of mechanically surgical management, with little information in the end.

I was faced with making the decision in 10 seconds to accept the intervention despite all the risks that this included. The edema being too important, I risked at any time the epilepsy crisis, the coma and the consequences, the M….

The intervention was the only alternative, which I thought at the moment.

I thought of my children a lot, then I accepted.

I still couldn't understand.

It has passed 3 weeks between the 1st consultation and the date of the intervention.

I was put under Medrol, in order to absorb the important edema, hello undesirable effects, I was as shot, but given the context, I had no other choice according to my attending physician.

I was very anxious permanently, by the fear of no longer being able to keep control.

It has become one more daily fight.

Plusieurs membres de ma famille ont voulu m’accompagner, afin d’être à mes côtés le jour de l’intervention, mais comme j’avais beaucoup d’appréhension, d’inquiétude et que surtout je ne savais pas du tout quel serait le résultat de cette lourde intervention, qui a durée plus de 6 heures. Je me suis donc rendue seule et pleine d’angoisse à l’hôpital (celui-ci se trouvant à presque 2 heures de mon domicile), après avoir mis de l’ordre dans mes papiers et donné des consignes à mes proches.

Although I expressed the wish to meet a psychologist, during hospitalization, because I no longer recognized myself, I was not heard.

L’intervention a eu lieu en janvier 2019, elle s’est bien déroulée. J’ai revu le neurochirurgien le lendemain, il s’est montré rassurant, mais je vous l’avoue, j’étais perdue dans l’angoisse.

Then I feel the effects of bizarre sensations, numbness and tingling of all my limbs, jaw pain (still present), I had the impression of being misshapen under this huge dressing on the head (feeling of having a large helmet on the head and being passed under a compressor roller). I even believed that my head had been reduced in porridge.

Then came the day when I was removed the dressing of my head (I took 3 days before agreeing to look at me in the mirror) I had not been given information on the aesthetic side that could result.

I had my face swollen with a huge right temporal hematoma (absorbed in a few days).

I had to adapt to this state and regain confidence despite everything, over the days.

Je constate de jours en jours,qu’il y a beaucoup de douleurs neuropathiques, puis une perte de sensibilité des membres (ce qui fait qu’au niveau des mains, tout m’échappe, et je perds souvent l’équilibre) encore présent à ce jour.

But there is also the problem of speech, the speech therapist carried out a complete assessment, which detected a cognitive involvement.

Thereafter, there was post -operative care, so much feared, the ablation of the staples (I had 52, ablation in 2 times).

Le dialogue avec les autres était très limité, du fait que je cherchais constamment mes mots, mes phrases étaient inachevées, c’était très épuisant à gérer avec les vertiges, et à la fois déprimant.

The crises of tears followed, then little by little I become more sensitive than usual.

There are also insomnia (I only slept 2 hours per night and as much the day interspersed with very long awakening moments). Which today have hardly improved.

I sometimes feel, especially during the moment of rest, like an electric discharge at the level of the limbs, I do not explain it to myself.

The swallowing is difficult, I have the impression of suffocating especially at the lying rest (even today).

Les maux de tête sont devenus quotidiens, qui se manifestent en milieu de nuit, pour s’intensifier au réveil.
Les seuls antalgiques qui me conviennent ce sont des Dafalgan codéinés (ne supportant pas le tramadol, comme beaucoup de patients).

J’ai toujours refusé de prendre de la morphine, des anxiolytiques, des antidépresseurs et du Rivotril, prescrits par la neurochirurgienne (en janvier 2020).

I question myself more and more ...

What impacts have the 2 meningiomas, remaining small sizes, which are inoperable? Apart from they are under surveillance (realization every year of an MRI) I have no other information.

Is there an impact on convalescence?

Today, I see that I find it hard to recover 20 months from the intervention.

I especially have this feeling that I miss something, that I did not find after the intervention.

The organization put in place to find a semblance of life has become very difficult.

Outings, activities, all of everyday life are subject to physical and legal conditions day by day. To the best of my form, if I start any activity, after 2 hours, I have no choice but to interrupt it; So much the fatigue catches up with me immediately and awakens neuropathic pain, dizziness and nausea.

Despite the rest time that follows, then impossible to resume the pace.

J’ai surtout été confrontée à ce que j’appelle, l’ascenseur émotionnel, avec des hauts et des bas. C’est enrageant, mais je continue à prendre sur moi, afin de rassurer mes proches.