Living with meningioma: from diagnosis to victory

My life was radically upset with the diagnosis of my meningioma (a brain tumor of the meninges) on November 3, 2021.

I underwent a brain MRI at that time following a visit to my ophthalmologist. She had noticed that one of my eyes was almost closed and told me to pass an MRI quickly because she feared an attack on the optic nerve.

It was November 3 in a small imaging cabinet in Paris 13th that a doctor told me the news. His voice was strong and each word weighed in its ad:

"You have a brain tumor covering your carotid artery and your optic nerve, measuring about 3 cm. You must consult a neurosurgeon quickly ”. His words echoed in my head. I was a lot and I didn't know what to think. I felt lost. Was my immediate reaction to ask "Is it Benin?" The doctor did not answer me and told me to ask for the advice of a neurosurgeon to answer all my questions and that it was absolutely necessary to consult in a hospital environment.

I managed to make an appointment at Pitié Salpetrière but only five days later. This time seemed very long to me and I even had to cancel a flight for Great Britain for fear of a stroke during moving by plane. However, this long-awaited meeting with the neurosurgeon lasted only 10 minutes, the period during which the surgeon told me to take cortisone for six months and come back to do radiotherapy if my situation did not improve. Files of patients were waiting to be seen behind me and I realized that it was not the place to go with a benign brain tumor and that it was rather reserved for cases of large emergencies. On the one hand there were the offices of the neurosurgery consultations and on the other hand the office of the anesthesiologists. It moved very quickly!

I realized that I was not going to advance much in this service and I decided to obtain a second opinion by contacting the Rothschild hospital, smaller and much more human. But, alas, it was not much better because the neurosurgeon told me during the first consultation that as I had no aggravating symptoms, I could take paracetamol and come back to him in a year! He told me that in general the meningiomas are mild and slow growth and that only 5 % of the meningiomas were aggressive, requiring rapid care in resuscitation service ...

After a few weeks of waiting, the pain in my right eye worsened and I was starting to have more and more headache. The headache increased and became more and more recurrent due to a mass effect from the tumor. It was also in pain on all of my face, pain on the increasingly intense trigemellar nerve, which led me to consult the emergency department during a strong episode. They practiced an emergency brain scan at Cochin hospital, the only one to offer this IRM service in emergency during the weekend. This examination showed the tumor still in support on the nerve. Doctors at Cochin Hospital sought to reach the main care service in neurosurgery to request their opinion. A few hours later, after a morphine infusion I was able to return.

Following this ordeal, I decided to join the organization of support for meningioma Amavea and I contacted the president, Mrs. Huet-Mignaton to ask him for advice. She suggested that I contact the Sainte-Anne hospital neurosurgery. The answer was fast and the neurosurgeon, Professor Pallud immediately replied. I was quickly transferred to the Pierre & Marie Curie Institute by her care for immediate radiotherapy since my tumor began to evolve towards the healthy tissues of my brain. The neurosurgeon gave me appropriate analgesics to relieve the optic nerve while waiting for this care.

After a first meeting with the oncologist at the Pierre & Marie Curie Institute in Paris a week later, the medical committee considered appropriate that I start a treatment of 30 proton therapy sessions in Pierre & Marie Curie Orsay (91). It is very finely adjusted radiotherapy which requires a specific care protocol and more particularly the preparation of a thermoformed mask and the installation of metallic balls inserted on the skull, throughout the duration of treatment. This mask completely covers the face and nose and is very disconcerting since there is little space to breathe, only a small hole at the level of the nose. Given the shape of my tumor, the doctors made two masks to me. This stage of mask manufacturing is highly unpleasant. This is done by the surgeon under anesthesia. This experience is all the more unpleasant since the mask is attached to the table to prevent the head from moving during each session.

The surgical intervention is not completely excluded but risks being very complex given the location of my tumor, at the level of the meninges.

Do not hesitate to look for several opinions. You need courage and a positive mind. The daily practice of a sport, especially swimming, helped me a lot to overcome this test.