Hello everyone,

First of all, thank you to the AMAVEA association for its help to victims, and for giving me the opportunity to speak out. I realize that many people are in this situation!

My wife Laëtytia, 39 years old, is not able to testify today , so I am taking the liberty of doing so in her place.

She started taking Lutéran around 2011 due to recurring gynecological problems : endometriosis, painful and very heavy periods. Since then, the prescription has been renewed each time by her gynecologist.

The treatment proved effective until the summer of 2019, when she began to experience speech difficulties and, at times, facial dysmorphia. More generally, she had also been tending to get angry more easily for some time.

She consulted her general practitioner in early July, who initially suspected a buildup of stress or even the beginning of depression. It's true that we were already going through a difficult period at that time; she had just resigned from her job after several challenging months and had recently lost her mother. She had also fallen out with two of her best friends.

But the symptoms worsened over the summer, and some of our friends started to notice. So we saw our doctor again in early September, who this time recommended a brain MRI and requested an appointment with a neurologist.

She had the MRI on September 26, 2019. We were simply told that day that we would receive the results a week later. But the very next day, her doctor called us back to tell us that the MRI had revealed a meningioma! It was a shock to learn this, but we finally had an explanation for her various symptoms. Our doctor referred us to a neurosurgeon at the University Hospital of Nantes , telling us that meningiomas are generally quite treatable surgically.

So we waited with relative confidence for the appointment with the neurosurgeon scheduled for October 24, 2019, thinking that there would probably be an operation in November or December, certainly relatively major, but that in principle things would be back to normal for the holidays.

Unfortunately, the consultation with the neurosurgeon did not go at all as planned. The first question he asked us was, "Are you taking any medication?" When my wife mentioned Lutéran, he immediately replied, "Well, you'll stop taking it right away." He showed us the MRI images, which revealed a tumor located on the left side, behind the eye ("centered on the left anterior clinoid process"), measuring 8 cm in diameter! He told us we had to wait three months to see if the tumor would shrink on its own after stopping Lutéran. And if it didn't, surgery would be necessary, but with very significant risks: risk of death or severe disability (hemiplegia) . This news was a real blow. Three months to wait with an 8 cm tumor in our head!

So we went back to the appointment with a new MRI scheduled for January 21, 2020, knowing that there might be no other option than to undergo a particularly risky operation. In the weeks that followed, while her speech problems improved, Laëtytia experienced significant vision loss, particularly in her left eye, which meant she could no longer drive.

To make matters worse, I myself fell ill during this same period. But given the circumstances, I initially didn't pay much attention to the symptoms. It wasn't until January 3, 2020, when my symptoms worsened, that I was hospitalized at the La Roche-sur-Yon University Hospital, where I was diagnosed with stage 4 Hodgkin's lymphoma.

Laëtytia had her second ^MRI and saw the neurosurgeon again on February 6, 2020, accompanied by a friend (I was in the hospital at the time). The neurosurgeon told her that the meningioma hadn't shrunk in three months. He then offered the following alternatives: either wait another three months, with less chance of the meningioma shrinking spontaneously, but also with the risk that the symptoms, particularly the vision loss, would worsen; or operate as soon as possible, but this also carried very significant risks associated with the surgery, as he had told us in October.

After a few days of hesitation, Laëtytia and I decided to have the operation done as soon as possible, as she couldn't bear the wait any longer. The operation was therefore scheduled for March 4, 2020. These few days of waiting were particularly trying, especially since, after my initial discharge from the hospital, I was readmitted urgently on February 22nd due to a serious infection, a consequence of the chemotherapy.

At the same time, knowing the risks of the operation and my ongoing treatment, we decided to enroll our 10-year-old son in school with his beloved grandmother who lives on the Île d'Yeu. Laëtytia had to manage all of this, fortunately surrounded by family and friends to help her with transportation and paperwork, right up until the day before her operation…

So, accompanied by a friend (since I was still hospitalized myself), Laëtytia went to the Nantes University Hospital the day before her operation. Luckily, I was able to tell her the night before that my initial check-ups showed the chemotherapy was working very well.

The operation on March 4th lasted 10 hours and unfortunately resulted in a major hemorrhage (I seem to recall seeing 18 units of blood in a report), which led the neurosurgeon to clamp an artery, later identified as the left middle cerebral artery. This resulted in the loss of 75% of her left hemisphere . Following the operation, Laëtytia was placed in an induced coma, from which she only emerged on March 16th. During this coma, she also underwent a craniectomy (removal of part of the skull to reduce intracranial pressure). She remained in intensive care for nearly a month, on a ventilator, a period during which her life was in danger .

She was eventually transferred to the neurology ward on April 2nd. By then, she could only mumble a few words ("yes," "no") and had completely lost the use of her right arm and leg. Despite this, she still had a good understanding of events and was able to express her moods.

She was transferred on May 14 to St Jacques Hospital in Nantes to undergo intensive rehabilitation: several hours of physiotherapy, speech therapy and occupational therapy each week.

This whole period has been particularly difficult, because in addition to our respective health problems, there was the lockdown and all the associated restrictions. I couldn't visit her before the lockdown because I was too weakened by the illness, and then visits weren't allowed until the beginning of June. Luckily, my parents came down from the Paris region during this time, and we were able to communicate via Messenger, initially with the help of the healthcare teams.

Today, even though her condition is slowly improving thanks to rehabilitation, she still has significant aftereffects. She can barely walk with the aid of parallel bars (her right leg is gradually regaining function) and, for the past few days, has been able to transfer from bed to wheelchair without assistance. However, her right arm still does not function. She has made considerable progress in recent weeks with her speech and can now hold a conversation, albeit a very halting one. She has also lost sight in her right eye and can only see a small area with her left, which forces her to turn her head to look at the person she is speaking to. On the other hand, she has little to no difficulty understanding speech. She continues to fight every day and, as the doctors have told me several times, remains very determined to recover.

Doctors hope that she will eventually regain some of her speech, though not with normal fluency, and that she will be able to walk a few meters with a cane. However, they are more cautious about her right arm and do not expect any improvement in her vision. She has been recognized as 80% disabled by the MDPH (Departmental House for Disabled Persons).

In addition, she will have to undergo radiotherapy to remove the part of the meningioma that could not be removed (approximately 10%) during the operation.

For my part, I am in remission and have been off treatment since the end of June. Our son returned home in mid-July and resumed his normal schooling. We will have to make some modifications to our house (we cannot return, even for a single night, without them). Finally, on the advice of AMAVEA, I contacted the DANTE firm, which asked me to prepare a file for a possible court-ordered medical examination

So, here we are today. I don't know where all this will lead, but I do know that the fight is far from over

Hopefully this testimony can help move things forward.

Note from the association: Laëtytia's photos are from before her surgery. As with many of us, the post-operative photos are too distressing.

Other testimonies here