My 5 years with a right anterior clinoid meningioma

In the preamble, I took Diane 35 for many years (Cyproterone Acetate)

It all started in 2016.

May / June 2016 :

I plan to claim my retirement benefits on February 1,²⁰¹⁷ , and stop working in mid-October. I am indeed eligible to claim them at age 60 due to my long career.

I'm an executive in an international group and for the past few months I've been involved in developing a new IT shipping program that absolutely must go live on July 1st^at two production sites in France. Things aren't looking good. I'm working a lot and I'm starting to get stressed.

I have been accustomed for some time to suffer from headaches in the morning which pass more or less quickly. At this time it became unbearable. I fuck for caffeine claradol to try to have clear ideas. I consult my doctor who prescribes several exams to me:

• Blood test
• Sinus scanning
• Brain MRI
• Consultation at the service of infectious and tropical diseases at the Tourcoing hospital because I was contaminated by Lyme the previous year and I travel a lot in the world but off the beaten track and sometimes with rustic accommodation conditions

On July 11th, I had my brain MRI. It was the last appointment. The other tests hadn't shown anything abnormal.  I figured I was probably experiencing burnout  and I wasn't overly worried.

And then, the radiologist comes over to me and announces with incredible tact: "Madam, you have a brain tumor, but it's benign." I stammer out a few questions, to which I hear the response that I need to make an appointment with a neurosurgeon who will see. It's in a difficult location. It's possible that it won't grow, and in that case, simple monitoring will suffice.

I am collapsed. I see my doctor seeking an RV in the Lille University Hospital neurosurgery service. He is told that the next RVs are in November, that a summons will be sent to me soon. We are in July !!! Finally, I will have an RV at the end of August.

And I agree with what I've read in various accounts: learning you have a brain tumor is terrible, but you feel completely alone with this information. When I told my partner, he replied, "I'm here!" Then he was completely absent until my surgery, convinced that the tumor wouldn't grow! I didn't want to tell my son until I had seen the neurosurgeon so as not to worry him.

I informed my superiors, who didn't seem bothered. The new program did indeed launch on July 1st^, right in the middle of the holiday period, which of course caused enormous problems for users. In September, I took 10 days of sick leave. I couldn't take it anymore.

At the end of August, I had my appointment^first with the neurosurgeon. The tumor was just under 3 cm. But it was encasing the optic nerve and the cranial carotid artery, making it difficult to operate on. It also wasn't the meningioma that was causing my headaches. He advised me to see a neurologist. We decided on monitoring, initially with MRIs every six months. The growth wasn't significant. But I entered a cycle of synchronized appointments (blood tests, MRIs, consultations).

Again, the same radiologist who had announced my tumor to me to the brain made a small measurement error during an MRI announcing in its paper CR 4 mm in the space of 6 months when it was only 1 mm

The neurologist has found nothing abnormal, evoking a slightly depressed state and offering the possible taking of an anti-depressant which I refused. The headaches have diminished when I stopped working.

The surveillance MRI and consultations with the neurosurgeon then became annual.

Physically this meningioma did not cause me problems. I have always been very sporty and from an endurance point of view, I have not seen anything change. I live near Dunkirk so in the flat country and I love the mountain. Until June 2021, I hunted and climbed in the mountains without any difficulty; I just noticed balanced losses in the downstairs the last 2 years.

It is more in my head that I felt weird. My entourage saw me in shape, and dynamic and for everyone, it is that everything was fine. I was wrong with this tumor that developed in my skull. Also alone with apprehension with each MRI.

2019 : I ask during my visit to the CHU from what size I risk discomfort; I am thinking in particular of epilepsis attacks. The neurosurgeon tells me when we will not expect this to start treatment (radiotherapy). The tumor is active then that it grows even if it is very slowly. It is now more than 3 cm. And he writes in his CR what he told me but I believe that inconcilitably, I did not want to hear him. I completely forgot this information.

2020 : My annual RV scheduled for early April at the CHU is canceled due to the COVID. I had done my MRI in early March because I had to go on a humanitarian mission to Senegal on March 16. Growth is as usual from 1 to 1.5 mm. I receive a new invitation for a consultation in early July and I decide to cancel it; I send the CR of the MRI at the secretariat of the neurosurgeon and I propose to meet again in April 2021 with a new MRI like every year. I therefore receive an RV for April 2021.

2021 : I was shocked when I had my MRI: the tumor had grown by 1 cm in just one year ! It's now over 4 cm. In my opinion, this year of pandemic and lockdown has had an impact on its growth. When I arrived for my appointment, I was seen by a resident who asked if I was okay with two medical students attending the consultation. I thought to myself that I was an interesting case for the students, which wasn't a good sign. She immediately told me that my case would be reviewed that afternoon by all the doctors in the department and that radiotherapy would likely be started to try to reduce or stabilize the growth. I was alone at this appointment, as usual. But deep down, I wasn't surprised. I'd noticed over the past few months that this tumor was taking up more and more space. I wasn't feeling well. We were scheduled to meet again before the end of April to finalize the treatment plan. Once I got home, I did some research to find out how GAMMA KNIFE rays work. And I racked my brains!

I planned to go for a 2 -week mountain in the Alps in June.

The RV for the end of April is long overdue and I make a recovery email explaining that I would like to be able to project myself into the future. We are confined until the beginning of May. I need air, to move, to be able to do projects. Waiting is hellish!

I finally received a summons, but it's for May 7th. I refuse to let my partner come with me. He's only accompanied me once in five years: to the first^consultation . After that, he didn't even bother to write down the appointment dates. I don't need him. I'm strong enough to handle what they're going to tell me. In my mind, I'm going to have radiotherapy, but I intend to stick to my plans for June in the Alps. A month more or less won't make a difference.

But change of program, with its growth thrust between 2020 and 2021, it is no longer a question of radiotherapy but of operation! I am then listed with all the potential risks:

• Significant bleeding (carotid proximity) which would require to stop the operation
• Left side paralysis
• Speech problems
• Stroke
• Viewed loss (optic nerve)
• Vital prognosis committed

This is what I remember.

I can refuse the operation of course. But I tell myself that I'm tired of living with this tumor and I was very calm by asking that it was not before early July. I am given the name of the neurosurgeon who will operate me (because it is always an intern that receives me) and I am indicated that his secretariat will call me to agree on an operation date. I specify "as soon as possible from early July. I live in the countryside. I tell myself that I will be able to rest in the garden after the operation.

I go home by car. My home is 80 km from the CHU. I am still a little disturbed. 5km from my house, I get arrested by the gendarmes. It is more than 7 p.m. and I take out my invitation to the CHR validating my traffic outside the authorized timetables. But that does not interest them: I was in speeding. 1 point less and € 90 because I was considered in agglomeration (at the exit of a Bled in the countryside). There are days like that !!!!

And again the wait begins. The expectation of this call from the secretariat of the neurosurgeon to agree on a date for the operation.

I go to the Alps in early June without any news. 3 days after my arrival I received an email with a convocation for hospitalization on July 5. I let you imagine my anxiety. I collapse! My friends surround me and support me. I manage to reach the secretariat for the CHU with a lot of difficulties and I tell them not to understand. They had to call me to agree on a date not imposing a date. But this is the scheduled date for my hospitalization. A letter will be sent to me by post with additional information. I will also receive a message for teleconsultation with the anesthesiologist.

This is the big reproach I make at the CHU: communication with the patient is zero. Whether before the operation or after. With the means of communication we have today, everything is incredible difficulty. You receive messages and if you have any questions, it is impossible to reach an interlocutor capable of answering the phone, or even by email;

It was during teleconsultation with a very reassuring anesthesiologist that I obtained answers to my questions. The operation was going to be quite long: between 4 and 5 a.m. In view of my blood and cardio assessments, he reassured me that being in perfect health, without any treatment, I had nothing to fear, anesthesia would not pose any problems.

These are the dice are thrown.

And now that I know the operating date, the countdown has started. Again this infernal expectation. How will I wake up after the operation ???

And what will follow will make me crack completely.

I must be hospitalized on Monday July 5 at 2.30 p.m. I planned a hike on Saturday June 26 with a very close friend but the weather is uncertain. I send him a message on Thursday morning to tell him that we will notify the place on Friday depending on the weather. I realize that she has not read my message and I find it weird.

In fact, she was overthrown by a car without a license when she came back from her work by bicycle. Transferred by firefighters to the CHD (Dunkirk) with a committed vital prognosis, it was transferred to the Lille University Hospital in neurosurgery. Méningée hemorrhage and discovery of aneurysms. Operated and saved. This accident saved his life. We found ourselves in the same neurosurgery service !!! It's still incredible.

Once hospitalized, I must say that I draw my hat from the nursing staff, to the bourgeois Dteur who operated on me and to all his team. A great service. I was very caring.

Bourgeois Dteur has done miracles. He is very Jumain. He came to see me the day before the operation and every day following, I also met the anesthesiologist the day before the operation.

I was the first one^to go into surgery. I can't even describe the anxiety. The same question kept coming up: how am I going to feel when I wake up???

Fortunately there is the small magic pill at night before to appease. It is 5 a.m.; I go to the shower. The time is coming to go down to the block. I am paralyzed. At the entrance to the block, I think it is the anesthesiologist who comes to me, puts one hand on my shoulder and puts the other on my hands, leans towards me and says "everything will be fine, don't worry" I still have tears in my eyes thinking about it. I almost started to cry and I thought that if I started to cry, I could not stop. So I kept good!

Afterwards I don't remember anything except at the time or after the operation, I was woken up to check that everything was fine. And I admit that when I realized that I was able to answer all the questions and move my members as requested, I told myself that it was won! What a relief.

The 1st days were painful; I couldn't bear the morphine that made me vomit. When we were able to find ourselves my friend and I, it was a great moment of emotions.

Find us together in neurosurgery! Simply unthinkable.

I went home on July 13. Disoriented because at hospital, doctors spend every day, nurses several times a day. You feel surrounded and safe.

I suffered, I had nausea, I was nightmares and I was sleeping very badly. I was without strength and exhausted. Fortunately my companion assured. My 2 dogs looked at me and did not understand. They are used to going out with me almost every day.

I realized upon returning home that I had lost my sense of smell. This wasn't among the possible risks. I sent a message to the doctor to let him know, but received no reply. It's a major problem: once discharged from the hospital, it's impossible to reach a doctor. General practitioners are usually at a loss when faced with this kind of situation.

The vision of my right eye also had variations after the operation and a blurred vision at the end of the day. These inconveniences have since disappeared. A control is planned in ophthalmology on March 14.

Before the operation, we were told great fatigue for several months. That's it. What is normal or not in what we feel ??? When you need to worry? I had not yet discovered Amavea !!

July was very difficult: nausea, extreme weakness, headaches, and overwhelming fatigue. In mid-August, I started going out a little, using a crutch for balance. I gradually increased the distances of my outings. Admittedly, I wasn't setting any speed records. Then I replaced the crutch with my hiking poles. By September, I was able to walk 6 km (at a leisurely pace). I also started driving again, for very short distances, at the end of September. The first^time I went into town alone in October (10 km from home), I was gripping the steering wheel as if I had just passed my driving test and was driving alone for the very first^time .

For the operation, I was not shaved my head. Just on a width of 1.5 cm. So once the staples have been removed, we did not see that I had been operated. I limited visits to 1 person a day because I was very quickly tired by a discussion. And I found myself faced with the misunderstanding of my entourage: I looked good !!! And everyone forgot that my skull had been opened, that we had tampered in it to remove a tumor of 4 cm and that it had tired my brain

I resumed the Pisicine 1 time a week in mid-October. I walk 10 km but I did not resume with my walking club because doing more seems difficult to me. I always feel very tired.

I can't stand the world, nor several people who chat at the same time. Therefore, I flee the meetings. I feel weird and without energy. I realize that I am with myself. I have no social life

When I read some articles, I wonder if I do not make a kind of post -operative depression. The control made in October is however very positive: grade 1 meningioma, no trace of recurrence, healing follows its course normally. I should rejoice and I can't do it. I cannot resume a normal social life. I don't want to see my friends.

I am a volunteer at the Restos du Coeur and I resumed my place every Tuesday hoping that feeling useful would help me but it does not seem to evolve in this direction.

My next consultation at the CHU is scheduled for April 13. MRI is already scheduled: March 17. If there is still no trace of recurrence, it will be a good sign!