Good morning
Come on, I decide to provide my testimony…. If it can help… ????
My name is Valérie, I am 52 years old ????
First of all, I warmly thank this group, this association for existing! Thanks to you, we can discuss all the hassles that our meningiomas generate ... We feel much less alone and above all supported. Many thanks !!
I have never taken Androcur or Lotényl. I took a pill but I don't remember the name at all and had a mirena IUD for about 15-18 years I think…. It was removed after my meningioma operation.
In August 2015, during the holidays, I started to feel "ants" on the cheek, nose, lips, all the right side of the face . Upon returning from the holidays, in September, I went to see my doctor, because I still found these sensations weird ... She immediately made the decision to orient me towards a neurologist. She makes the appointment herself so that it goes faster!
In mid-October, I see this neurologist. He makes me do little tests and tells me that there is surely a small cyst that walks somewhere on a nerve. To find out, you have to make an MRI. He therefore applies to the CHU and you have to wait for them to summon me!
I pass the MRI in November 2015. As I left, I am not given the results, the doctor will have them. OK!
A week later, I receive a call from a doctor, Pr D. who tells me that he is taking care of my file and that he wishes to see me the next day. I don't even ask myself questions, I just say to myself "say so they are effective !! ».
So I have an appointment with Professor D. at 11 a.m. the next day. He is late in his consultations! It annoys me because I have an appointment with the dentist at 2 p.m. and that he is already 1 p.m. ... When I arrive in his office, he explains what I have: a meningioma, a benign but very poorly placed tumor ... that he studied the file with his colleagues, they recommend an operation, which can be followed later of radiotherapy. The operation will take place during the 1st quarter 2016. I will be called…
In fact I do not even realize, I only think of my appointment with the dentist 
. It was only when arriving at the dentist, explaining the why for my delay, that I achieved what I was telling !!
So I have, I quote (because complicated ????): " A meningioma of the region of the right cavernous sinus which develops behind the clivus, crosses the tentory incisure and comes to occupy the very previous part of the right ponto-cerebellar angle. The right internal carotid artery is included in the meningioma and its diameter is reduced (just under 50%) ”
On the advice of my husband, I immediately saw my doctor to talk about it and evacuate the news a little…. It was and is always very great support !! She is a great woman !! She helped me understand everything and explained where I was going…. She made the request for ALD because it was an important thing to do before starting the whole adventure ...
I had to warn my children, my parents ... family, friends. I believe that inconsciously, I have a little "diluted" the thing, put a bubble on me ... especially not to panic and not panic!
On the job side, I talked about it with the friends and warned my chief that I will be away soon for about 2 months that he said the surgeon!
Then I waited for the hospital call ????
On March 15, 2016, I returned to the CHU for an operation on March 16 in the morning. The operation lasted a good part of the day and then I spent the night in intensive care. Everything is going well! Back to room the next day. And as everything is for the best, released 2 days later! Everything has not been removed but it should go. I have a lot of blues, the right eye is downright closed, a big scar on the head ... but that will be!
The more the hematomas decrease, the more I realize that I see double . I see the surgeon again. We must wait, wait until the nerves atrophied by the tumor resume their place. I see the ophthalmologist, ditto, patience…. To get out of the house, you have to accompany me because I do not work straight. You have to wait until the brain compensates.
Suddenly, my work stoppage continues …… I am an administrative agent and I cannot turn on the computer, impossible to read on screen.
At the beginning of 2017, I am still on stop…. My doctor advises me to contact the occupational doctor to explain what I have and see what she thinks of the situation. She agrees with my attending physician and the surgeon, you have to wait again ... set up an MDPH file for a disabled worker recognition in a 1st time . She wants to see me regularly to assess the situation.
In October 2017, I am still on stop, I had the disabled worker recognition ... I hope to resume my job ... I manage to read a little on screen now, taking breaks regularly. To take stock, the occupational physician turns me to Sameth (aid for keeping the employment of disabled workers) who, they send me tests in a center for visually impaired. They will adapt my workstation.
In November 2017, I was summoned by the CPAM consulting doctor. The woman who receives me does not even look at me, she is behind her screens ... "You come why?" ». I answer him you summoned me because I was made with a meningioma. His answer "It's Benin that!" ». I say yes but I have consequences, I see double, I find it difficult to stay on screen for a long time, we put a filter on my glasses…. My doctor and the occupational physician are considering a resumption of therapeutic half-time after the implementation of an adapted position and can be partial disability ……… she replies: “ We do not have a disability like that! You don't see anything, well change your job, move, go back to studies…. You would be a mason I won't tell you to go back to school, but you have diplomas, you are capable of it! »I am 50 years old, I am stuck, I don't even know what to answer! She arrives next to me, remove your glasses, follow my finger. Well you see clear! You follow my finger! I'm lost, I don't answer anything ... She tells me that the interview is over and I have to see the social worker to consider my future ... it's time to move! I leave from there, depressed, finished. Then I will immediately see my doctor. She is absent (sick), the replacement cannot be returned ... He tells me that you should not stay like that and go see the occupational doctor. She can tell him that she does not agree! So I call immediately and the secretary told me to come immediately. The occupational physician cannot be returned and tells me that she will call him. In the meantime I also took RV with the social worker of the CPAM who does not see at all what she can do because I did everything, I put everything in place ... MDPH, Sameth, Occupational doctor, adaptation of the position ... She tells me to drop and resume my work when my post is adapted.
February 2018, everyone agrees that I regain the work in therapeutic half-time and on a suitable position. While everything is put in place, I go back to work in early April 2018! And yes… we are far from the 2 months of work stoppage ????
As I always see double, the ophthalmos orients me towards an eye specialist in Nantes. We cannot correct, there is a triple damage to the VI, IV and III nerves and especially an excycyeviation. It is not possible to correct without causing other deviations.
In October 2018, the occupational doctor told me to apply for category 1 disability , in order to stay half-time because I will not be able to work more ... I always see double and tired very quickly. For a few months, I have a filter on the right glass of my glasses (photo)
With the help of my attending physician, I set up the file with mail of the occupational doctor, the surgeon and the ophthalmologist.
I am therefore reconvoked to the CPAM by the same advice doctor ... I go super stressed ... And there "Yes I totally agree with the occupational doctor, it takes category 1 disability! »Your friendly…. Amazing !
Since November 2018, I have therefore been in category 1 disability, I work in the morning and in the afternoon, rest.
As there is a part of the meningioma, I have an MRI follow -up every year.
In recent months, the paraesthesias have returned more beautifully ... The rest of the tumor has compressed a whole bundle of nerves…. In addition, at the last MRI, the meningioma has evolved slightly ... Suddenly, an appointment for radiotherapy ... Professor P. explained everything to me and warned that he studied my file. We will try to improve my situation with radiotherapy, but there may be after-effects, including the risk of total blindness, the risk of irradiating the pituitary gland ... The tumor is really badly placed! It is glued to the pituitary gland, so there may be consequences at the level of hormones, especially cortisol.
After matures reflections and discussions with my attending physician, I made the decision to go anyway ... If I do not do radiotherapy, it could be worse later ...
The making of the mask was made in mid-September and since 24/09 I will (except weekends) do my radiotherapy session. It doesn't hurt at all, but it exhausts…. ????
I cross my fingers so that everything is improving and the consequences are less….
You have to go ahead! And then Mrs. Buzin said, meningioma is Benin ????
Many thanks for having read me! Many thanks to this group- Association to exist! Many thanks for your support
Other testimonies here
