My two tenants
Are you a woman? Has your gynecologist already prescribed progesterone tablets such as Lentenyl or Luteran? If so, this testimony may interest you.
A few years ago, in 2021, my new tenants became known. I often had a closed eye, as if I had an ophthalmological or other problem. It lasted some time, and my family and my friends could see on vacation photos that there was something that was wrong, but they couldn't know what it was exactly.
It was during a consultation with the ophthalmologist that I was asked to spend a brain scan to verify that everything was fine. It was in November 2021. My MRI was made and I waited in the waiting room, I thought it was for an eternity, to obtain the results. Everything that surrounded me seemed so impersonal and sinister. Everything seemed so dark and dismal. I remember that I was asked to sit down and that the doctor on duty told me unresolved that something was wrong and that I had a fairly important benign brain tumor, which looked very much like a meningioma, and that I should see a neurosurgeon in the following days . At the same time, I felt like I had a stab in the chest. I was stunned and suddenly felt extremely lost and alone.
Several questions then entered my head, one after the other, and so quickly, at the same time that I was announced the news: was it benign, was I going to get out, was it urgent, could it become clever, and, more precisely, were my days counted ...? I was even ready to go the same day to have a will to write a will at the notary, to leave everything I had in the world to my beloved family.
So, I breathed deeply, I looked in front of the doctor's slender silhouette, in a white coat, which had just told me the news and I left the MRI consultation room, distraught.
How am I going to announce the news to my family and my children? Could I announce this news by phone to my mother, my brother and uncle, who live abroad?
I felt tears get into me, but they did not go up to the surface. The streets around the Place d'Italie in Paris, where I had passed my MRI, were so animated by happy people, sounds of joy and laughter of the joyful people who were worth their daily occupations, and I really wanted to reach out to get support.
My first real contact was the secretary of the neurosurgery department of the Pitié Salpetrière hospital. No neurosurgeon was available for five days. So I made an appointment. I couldn't believe that I should wait so long. It was too stressful to wait, to ask questions and to talk about the benign or so-called benign brain tumor of 30 mm that I wore. I didn't sleep much and these five days seemed so long to me.
To make sure I was doing anything, I knew that my maternal grandfather died of a malignant brain tumor, so I was really terrified.
The day of my first visit to the neurosurgery unit arrived. Yes, the neurosurgeon confirmed that I had a fairly voluminous meningiom in the region of the Caverneu X sinus region of my brain, which is at the bottom of the skull and houses all the nerve roots, therefore, as you can imagine, a very painful place for a tumor.
The results of the neurological examination have shown that the optical and trijumeau nerves were affected by the tumor, without any other sign of danger at the moment.
The neurosurgeon told me to spend an MRI in six months and wait to see how things would evolve.
Six months of pain and compression of the Trijumeau nerve therefore followed . I returned, captivated, to my next meeting with the neurosurgeon. This time, I was recommended to go to the Pierre and Marie Curie Institute to start my proton therapy sessions. Before I started this therapy, I had to enter an X -ray machine so that I was made a mask. It was a fairly strange and unpleasant experience because the face is fully covered for about 20 minutes. I was absolutely frightened, but I could not call for help, because the only slit that allowed me to inspire air and see the world was that of my nose ...
I had to undergo 30 proton therapy sessions at the Pierre and Marie Curie d'Orsay center, in Saclay, at the end of 2022. It was unpleasant, because in addition to all the nausea, radiation during all these weeks almost made me die the tympanum, which was really a painful experience. I remember the endless taxi trips to go and come back from Orsay, where I often asked the driver to stop to be sick by the window. I also experienced hair loss and excessive heat around the eye. During the treatment with proton therapy, I had to wear a heavy mask on the face and head, for 15 to 20 minutes at each session. It was a strange feeling and certainly not for people with claustrophobia. Then, after three months of continuous treatment, I had to spend a new MRI to check if the proton therapy had managed to absorb part of the meningioma. Unfortunately, imaging has shown no change in the size of meningioma.
I knew I had to try to stay focused to think about the next steps. My neurosurgeon suggested that I opt for Gamma Knife, which is a unique and painless irradiation.
After reflection, I decided to carry out this operation at the end of 2023, a year after proton therapy. Everything took place in the operating room, because I had to undergo small incisions on the head to fix the mask. This experience was relatively painful despite the administration of an analgesic intravenously.
After a day spent in the hospital, I returned home, hoping that this treatment would be successful. A new MRI was made to check if the meningioma had absorbed itself. Unfortunately, the situation remained unchanged and meningioma has not decreased in size despite all the treatments. I must admit that after thirty proton therapy sessions and a gamma Knife session, I was more than disappointed.
Many things went through my head and I started to wonder if I was going to have to live with my meningioma for the rest of my life, because all the neurosurgeons that I had met so far had been very reluctant to the idea of surgery.
I take medication to relieve the pain of the optic nerve, but it does not stop the pain that runs through my face like ants in the trijumeau nerve every day.
This has been going on since November 2021. I have consulted four different neurosurgeons, the Pierre and Marie Curie Institute for radiotherapy and pain relief, and I still live today with my meningioma while trying to fight pain . No one really understands the level of stress and pain with which I live every day, because everyone is so concerned about their own concerns and I must admit that I am quite reserved when it comes to talking about pain and medical problems.
So far, nothing has relieved me. I tried tegretol, cymbalta, gabapentine and even alternative medicine paths, such as sophrology sessions to try to relieve pain, which, unfortunately, were not effective either.
My only resource to relieve pain is running and swimming. Running for endorphins and swimming to relax and work deep breathing to reduce pain. I try, as far as possible, to run at least three or four times a week, when my work allows.
I also try to constitute a legal file today because my meningiomas would be due to the taking of progesterone called lutenyl for several years. At the time of treatment, in 2005, my gynecologist had prescribed this medication to me without warning the potential side effects of brain tumors and, in particular, meningiomas.
My file is currently being studied by a law firm to determine whether it is useful to start legal proceedings to try to obtain compensation from the laboratories responsible for the production of lutenyl.
Business to follow ...
Jane
