My name is Michelle, I was born in May 1969, I have two children, a boy born in 1994 and a girl born in 1997.

I live in Toulouse and work (until 2018) in a nursery school with the project to become an educator of young children.

I took Diane 35 for 5 years for acne problems, Androcur for 5/6 years for falling hair. These treatments were taken when I was between 20 and 30 years old.
Then I took Lentenyl for 17 years (from 2002 to 2018) for uterine fibroids. I underwent a hysterectomy in 2018.

We are in 2016 (year of my move, in February, and therefore a change of doctor). I have been subject to repeated sinusitis for several years (around 15 years) for which I am treated by corticosteroids, antibiotics and vasoconstrictors. During a lunch in May 2016, I realize that what I eat has a bad taste, while
in breakfast in breakfast everything was normal. It happened suddenly but I tell myself that it will pass ...
At dinner it's the same thing and when I prepare my meal, I feel bad odors (parosmia) that I can't describe, a bit like burned.

The following days are always the same, it worries me, I make an appointment with my new attending physician and explains the situation to him. She tells me to make an appointment with an ENT.
I make an appointment in June 2016 in a clinic in Toulouse. ENT speaks to me about anosmia, this is the first time that I have heard this term. He does a clinical and endoscopic examination which does not find any particular anomaly apart from a slight deviation of the left partition. No polyps and very free olfactory slots.
Here is words for words its conclusion "In the absence of a traumatic context and polyps, this anosmia is therefore probably post-viole with a very random recovery prognosis
as I explained to it, no specific treatment or examination to be expected, and a recovery which can take up to 3 years, that is to say the complete renewal of the olfactory mucus. She will continue the Rinoclenil for her chronic rhinitis but I am forced to be very circumspect on the possibilities of recovery unfortunately ”.

I come out of this meeting alone and "deflected" by this diagnosis, not that I expected a solution but more explanation or the possibility of making additional exams. In fact a listening and possibly a hope ...
I do not dare to talk to my entourage except my children because I think nobody will understand what happens to me, I already do not understand myself, I am afraid that they find me "weird".
I am anxious, sad, in the unknown, with a lot of questions ...

I start eating things that I have never eaten before telling myself that maybe I would have a feeling of taste as it is a new food. I stop in the pastries buy salty or sweet, I buy packets of cookies that I eat without hunger. In total I take 20 kg. It becomes an obsession, I need to eat, I can no longer control myself.

During the summer, I find myself without enthusiasm, tired, without physical resistance, I take the car for the slightest small journey, while usually I do everything on foot as far as possible.
I get up in the morning, take my breakfast then go back to bed, I don't want anything, my daughter who is with me for the holidays tells me that she does not "recognize".

September arrives with the start of the school year. I am very tired, a lot of headache from morning to night and from evening to morning, I have mood disorders and I can get started easily, my colleagues are worried because I am not like that usually, quite the contrary I am a calm and posed person. It also scares me because I realize it. Dizziness and vomiting appear.
So I see my doctor who will make an appointment with a neurologist and make me a work stoppage.

I see the neurologist in September 2016 who, on clinical examination, finds no anomaly and asks me to pass a brain MRI.
On October 5, I spent MRI in a clinic, then the radiologist doctor takes me apart for the diagnosis, he tells me that I have a size, called meningioma. There it is the shock, all my thoughts mix, I am lost. In view of my condition, the radiologist doctor accompanies me to see my neurologist who is on the same clinic and who takes me between two patients to reassure me. She explains to me that meningioma is a tumor, in the majority of cases, non -cancerous, that it is the cause of my frontal anosmia and that it measures 4.5 cm x 4.7 cm. I have to consult a neurosurgeon whom she tells me at the Toulouse University Hospital. She makes the appointment for
October 8.

The neurosurgeon tells me that it is a meningiom of the sphenoidal jugum with a major brain edema in the two bi-border regions. I've been changing it very slowly for several years . He also explains to me that mood swings were "normal" with the pressure exerted on the brain . Meningioma has touched the olfactory bulbs and is close to the optic nerves so it is necessary to intervene fairly quickly.

The intervention is scheduled for November 16, 2016 with a corticosteroid treatment in the meantime to reduce edema.
I spend this pre-operative period with anxieties and insomnia but I believe that I am not fully aware of what happens to me and tells me that I have no choice in any case, whatever happens I have to go through there. I feel anger towards my attending physician who "treated" me sinusitis for fifteen years, I even feel guilty for not having asked for an exam before, I tell myself that it is my fault but at the same time I trusted him.
I get help with kinesiology sessions to evacuate stress.

I return to the hospital on November 14, the stomach tied and saying that perhaps I will never come back again and with many negative ideas ...
On the morning of the 15th, a cerebral arteriography, pre-operative and possible embolization is planned. It turns out that meningioma has contributions by branches from the two
ophthalmic arteries as well as by very small size branches not accessible to embolization by the left external carotid. It therefore follows that the benefit/risk ratio is not in favor of an embolization given that it was a question of emboling by the ophthalmic arteries.

I am operated on on the 16th, the excision is complete, the intervention goes without incident except for a late awakening. I am in surveillance in intensive care.
During the night of the 17 to 18 I had a fever, a tachycardia with hypocapnia (decrease in the concentration of carbon dioxide in the blood). I pass a scanner and an echodoppler and it follows
that I have a pulmonary embolism and a phlebitis. Taking anticoagulants is discussed because hemorrhagic risk then finally set up from 18 under close surveillance. I stay in intensive care for 5 days.
Following this incident, a thrombophilia assessment is carried out. It turns out that I have a venous thrombophilia by heterozygous mutation of the V factor V of Leiden and prothrombin as well as a phospholipid syndrome (SAPL). This has no connection with meningioma but at least it allowed me to know and be treated by anticoagulation in the long run, as well as to inform my family because there is a genetic factor.

I leave the hospital on November 24, the anatomopathological results are normal and indicate that it is a grade 2 meningiom , it will therefore be necessary to follow up and possibly consider radiotherapy. My anosmia persists , the neurosurgeon is unable to tell me how it will evolve.

The return to my home is particularly difficult for the first days, I cannot follow a conversation, I feel "elsewhere", I dare not say it and ask myself if my loved ones realize it. I'm afraid of staying like that afterwards.

It arranges after a few days, I feel better and above all I no longer have headache. On the other hand I still do insomnia with many nightmares , anxieties and am followed by the psychologist of the neurosurgery service. This is absorbed after about six months. Regarding my anosmia, I later said it for those around me. My diet is very irregular, I don't want to prepare to eat and eat very little, it follows a weight loss, not want to eat without taste, for me it is "useful". I can no longer support the meals in which we constantly hear "it's good, it smells good, do you like? », I am unable to respond and participate in his exchanges, I feel apart and isolates myself in these moments, the restaurant, I no longer go, I no longer perfume myself. I am sad about this situation but keep a slight hope all the same ...

I resume my work at school in early June 2017 at the therapeutic part-time and with a set position. In July and August 2017 I was a radiotherapy treatment at the IUCT (University Institute of Cancer in Toulouse) - Nova 5 treatment machine.

In February 2018 I consult in day hospitalization at the Lariboisière hospital in Paris , an ENT surgeon specializing in olfactometry for a balance sheet concerning my anosmia. The diagnosis is still an ordeal because I no longer have olfactory bulbs it announces to me, they were destroyed by meningioma and will never find taste and smell .
Never again I would feel the slightest odor, the pleasures will no longer be the same, for example, Christmas and its smells of fir, oranges, chocolates, ... This party is no longer experienced as before. I feel like the void around me, as if nothing happened ... Not to mention the dangers of ingesting a spoiled food, I no longer buy fresh fish, only frozen. The fear also of not smelling a suspicious smell. No longer feeling the smell of yourself is also very frustrating and can be destabilizing.

Regarding food and in order to keep a minimum of enthusiasm and pleasures, I try to hang on to other senses such as sight, texture, hot/cold, colors. It is a vigilance on a daily basis so as not to fall into banality and non-enteeling and keep my morale and be able to express themselves on what I feel even if it is different from the others, it can be even enriching for the people around me.

Professionally, I did in 2018, a professional retraining because my project to become an educator of young children was no longer possible in view of my handicap (although not yet recognized as such ...).
I am currently medical secretary and I also like it!

At the start of the year, I knew the anosmie.org association , which set up an olfactory rehabilitation protocol with essential oils (lemon, cloves, geranium rosat and eucalyptus) in order to possibly find some sensations even if they are not real odors. I started it in March 2023 and this takes place over 24 weeks. I start to have a sensation with eucalyptus essential oil. It is rather positive.
The positive is not always there because we all go through difficult times, the path is sometimes long. Do not be discouraged, you should not be afraid to talk about it around yourself, whatever others think, the main thing is to surround yourself with good people .

We all have the right to share what we feel and we all have to learn from each.