Carine 46 years old, 1 meningioma - 4 operations

History of a clandestine passenger: the announcement

Idress on the staircase (cracked coccyx) many pain, migraines, tinnitus, sensations of imbalance, noise difficulties, insomnia, drop in the sight of the right eye made that I undergo an MRI which is quite long. I don't understand why. We are waiting for the result. I am accompanied by my husband who will support me during these 2 years .
I am not convinced that I have something, it has been more than 4 months that I suffer and that no doctor really find what I have. We find the time long and then the radiologist neurologist calls us in his office and asks us to sit. And there he tells us: "Madam, the results are not good. You have a meningioma of just over 4 cm but what worries me is an edema that compresses the cranial box". My husband had understood, me not.

I just ask him if I can be treated with drugs because I really have too much pain, he doesn't answer me. He looks at my husband and said to him: "Sir I will recall and I did it earlier the neurosurgeon professor at the Lille CHRU. I want your wife to be seen today if you cannot drive her she leaves by ambulance. See you scheduled at 5:00 pm".

We go out, I am stunned, not because it is serious, I am not really aware of it yet but I do not understand suddenly, I must quickly see another doctor. We return to my parents-in-law to get children. My mother-in-law takes me in her arms telling me it's going to go. I don't understand because she never took me in her arms. It may be important what I actually have (I teach the STMS, I know the nervous system and its pathologies, however).

Arrived at the CHRU, my file had been faxed to the teacher. We meet a great surgeon who tells me I need to work, you have a meningioma on the main vein of the brain with compressive edema. I answer him: "I can rework when?" With his big eyes, he said to me "Madame you still work?" And there he said to me: "It's very serious Madame".

"But I have to put you on medrol ( a derivative of cortisone ) because I cannot operate in the state. The edema is too big, you must decongest. I call you when I operate". (Yeah, yeah as if a great teacher calls his patients). There will be 2 operations: an embolization to cauterize all the hemorrhagic vessels of your brain and a 2nd for the removal of meningioma the next day. He shakes my hand by holding it for me for a while and said to me: let yourself be carried, I take care of you, and I feel kindness, I understand that this is very serious but not aware of the risks and the following after.

I especially understand that it was going to be the person who will save my life or not.
Back, you have to announce the news. We choose to minimize with our children. But lively Internet. They understand well. We choose not to say anything to our daughter who was 5 years old at the time. Advice from the anesthesiologist, these few days are endless. I do not know left alone, I'm afraid, I am like a little girl I need a light even if I have not sleep for months already, there is added uncertainty. My husband is there for me, but he suffers, he is afraid, he does not tell me, and then one morning Professor Assaker calls and yes in person to tell me that I am returning on the 24th and that I go to the block on April 25 and then he said to me again. I am here, strangely I trust, I never felt on the part of a surgeon this benevolence and simplicity with the patients so worth it.

We have to organize ourselves for children but they will be preserved, it's the holidays. They will go into the family this is an opportunity to find the cousins.
I'm always afraid, I have to make my bag but I don't know for how long, my head is empty. This is this awareness of gravity is present in me, but I have to go, this service is the unknown. This disease is unknown to me and why this damn edema is serious to the point of having to undergo 2 operations.
I would not have thought it will become almost my daily life, a familiar place for 2 years.

The roles are reversed, Hugo my older son tells me when he sees me cry: "don't worry mom, it's a great surgeon". I know he was afraid, I was strong, I was causing myself in spite of myself, because of the disease my anxieties, a great concern around me. In my head, I especially had this image of opening of a skull in me, and yet I did not yet know the real course of all this. I see around me worried people they don't tell me but I am not fooled.

My bag is ready. I say goodbye to everyone. I tell people I love them, and yet I am not very sentimental in normal times. I cry I don't know when I go back but it is necessary. I am not strong just that in life there are things that we must undergo the choice.

Today will be the during my hospitalization. I did not return until May 5, 2018.
My stay in the hospital engraved in me for all my life :
I returned the day before and as many we do not sleep at night (stress, anxiety, medocs tensions etc.) Good me that I have not known what I can sleep, it does not change too much, in the morning at 7am, a nice nurse asks me to make my operating shower, then a little. Professor Assaker arrives to tell me that he will be accompanied by cardio vascular neurosurgeon, 2 neurologists, the cardio surgeon of cardiology service, well I am surprised by this little world but I do not react (I understood the night before my 2nd operation the gravity of this 1st operation) he explains to me that I will not be opened today in the skull but tomorrow. Today, a catheter will go through my femoral artery and then abdominal then carotid to reach the brain. All this to caute the hemorrhagic vessels by staples and decongest the edema for the removal of meningioma. I answer ok.

Departure with 2 super stretcher bearers, we chat they make me laugh, everyone is ready. The anesthesiologist prepares me, I hear voices, I do not understand he gave me something, but they do not seem to be okay I do not know too much. He says "Madam we sleep", wake up I don't know what time it is. I touch my head. I have nothing, a leg pain. I am looking for, I feel a dressing in the groin. I arrive at intensive care and 3 people are already in my room, in fact, I feel good, not really tired as if the impression of floating but I know how to speak. I am in intensive care, in my room it is a real anthill, I am told it is 8 p.m.. The operation lasted longer than expected. 8:30 am in all. I can’t come back to sleep as long, in short one of the past, more than one, my brain is large on a screen, each caregiver stares at my brain I do not know if it is good or not, Professor Assaker arrives, he says: “The operation was longer, you have made a small cerebral hemorrhage. Tomorrow I’m operating for 7 hours, have confidence in me”. This is the essential. I do not react I do not know the impression of being in this bed but not my mind. It's a night when I have a caregiver almost all the time.

The next day it left, in the block still a string of documents. I see Professor Assaker who takes my hand and explains this funny robot to me above my head, he will exactly calculate my skull, and put a bone (I forgot which) in the right place. I am strangely admiring, I learned something. I can explain it to my students, strangely everything he tells me make me think that it is not me. He repeats me earlier. I fall asleep.

Wake up in my room with intensive care. I am plugged in everywhere, an impression of swollen eyes, something that tightens me but no pain, it agitates, I hear the noises of the machines, I feel that I no longer have a bad jaw, to this temple. This stay will last several days, they are very nice, bother me to ask me in what year I am, the president etc. I feel emptied.

When I can go back to bedroom, I see my husband. He tries to look good. I speak little. I have not yet eaten the perfs have fed me, and when I am given a meal. I strangle myself, what happens? I can't coordinate my swallowing. Meals are painfully happening but in fact I have no pain.

I still do not sleep, it will also be a rehabilitation, my brain is no longer capable , over the days, I start walking, my scar apparently is magnificent dixit the nurse. 42 staples. I see my children 1 time. I feel their fear and concern. My 5 year old daughter will not be able to come, I do not realize but I have a lot of bruises, always this impression that I have left the house for a very long time. I feel like my body and my brain are 2, and I have to order my brain to do things nothing is natural. Professor Assaker tells me that I can start again, the bullshit meningiomatous will be checked. My meningioma was not completely removed because it is located on the main vein of the brain. I see him again in 2 months, he tells me you were admirable, it makes me feel good but I do not know what thought I am so tired. MRI before leaving, I am explained that the small rings are species of staples they will leave when my vessels are completely cauterized. I am once again admiring, the feeling that it is not me. I'm never sick. But there I do not master anything.

I will make a summary of my convalescence. But everyone of course is different.

Coming back from the hospital, I have the impression that I have left for several years. I am exhausted.
My husband puts me in bed. I sleep but wake up often. I need this same little light before operations. I can't take it anymore, my body is heavy and heavy. For the meal, I eat slowly and try to swallow gently. My children are happy, worried too. This life full of life, with a strength, which managed everything is there on her chair and at the same time more there. I feel totally weakened like an injured child but I don't know why. My husband had to take a stop to help me and manage the children. He washes me, he cuts my meat to me. I do not react. I'm here, a few people come to see me for 5 minutes. I'm happy but tired they are happy to see me I have the feeling of not being me. It will be at least 3 months, my husband is my third person. I am a child. My children help me, we tell my daughter that mom cannot have too much noise, comes the time for the first check in June 2018, entering the service I am soothed as if this place was more familiar than my own house. I am shown my MRI and I leave.

Time passes, the days are alike. I hurt my right leg, weird. After a doppler, we realize that my femoral artery was damaged during embolization. Emergency meeting at CHRU. My blood blood circulates almost more. I am operated in mid-July and suffered an artero femoral bypass finally 2. The first did not work. The next day Rebloc.
Still 4 p.m. operation. I am emptied, I have a lot of pain. I end up with a large scar in the stomach. A belt I am terribly painful, in addition to my fatigue of April operations, return home. I have a lot of anxieties, and there I dream of the intensive care of this famous machine that I found great in the block when I was operated on meningioma.

The months go by and the controls multiply, between bridging and meningioma. I am on long illness leave. I progress I tell myself that I am there and that I am lucky. I can't read, being with a lot of people, I can't structure my exchanges so I'm here and at the same time not there. I see a neuropsychologist and do 3 hours of tests. Conclusion: memory and cognitive disorders, nobody knows when I go better and if I can resume a professional activity. I know from time to time to do 2 or 3 km to get my daughter at school, the problem is my concentration. We buy an automatic transmission, we take an assistant 4 hours a week, it costs us an arm. My husband must still go back to work. It's been almost 1 year. Then comes the control of 1 years. Always fatigue etc. The vessels are a little dense around the balance.

Verdict: Meningioma repels but slowly , the chance makes that I have big pain on the right side again, but it is not because of meningioma, so I stay for about 4 months with these pain. My husband is again on stop, and I fart a cable, no longer want to fight, to live. I revise intensive care and I do not explain this anxiety. I am followed by a great shrink and there she tells me that everyone finds me strong, great etc. Unconsciously it is a strong pressure and I am not repaired psychologically. My body has not yet left me this chance, hypnosis, and big follow -up with it, I almost died and I remember it now, and it is true the neuro confirms it. The night after the excision, it is not the meningiomal in question but edema and this double operation, very slowly I start to be in peace with myself , before I forced my brain, and I did 3 steps back and 1 forward. So I decide to do what I can only in any case what my brain authorizes me to do. It's little, but hey I accept. I put words on evils. I am starting to regain an inner peace, I agree to hear that I repeat the same thing for children all the time, that I use post-notes for everything etc. In the meantime it is necessary in November to undergo surgery by Gamma Knife. My stay is psychologically complicated and I am still tired of my 4 operations.

Always a lot of pain I am seen by a neurologist, verdict: I suffer from vascular algia of the face, treatment of blocker beta, oxygen, as if I did not have enough at the moment, I start reading 30 pages again.
I loved reading before. I no longer use post-notes. I am especially in peace with what I have become. I often cry not because I am no longer me but because it was very hard. My husband had to stop in November for the Gammas. He only resumes in 15 days. He was also followed, I was even afraid of not finding him anymore like a husband but as my third person, we are waiting for September to find out if the gamma worked, I received a letter from the CHRU I have to do other exams because there are suspicion of a fistula on the vein where the meningioma is staying, we will see the nights are a little agitated but I live in day and I appreciate every little progress. I am the homework of my children, manages to express myself properly with a certain concentration but no matter I get there. I rest as soon as my body asks me and I am no longer angry with this one, my automatic gearbox helps me to be a little more independent. I am no longer angry when I take the wheel even if I drive on small journeys that I know by heart and not yet the highway. I will resume the work, when, I do not know, I hope in April 2021. I believe it will be 3 years, but as an impression that everything that happened before is no longer part of my life. I am also able to do what is good for me.

This is with a lot of emotions that I have looped all of this to you. I certainly forgot elements. I am still very emotional on all this path and never after being operated I would have believed that these operations were not worse than the path of my new self. I look at myself in the mirror and it's me.

I wanted to thank you and I hope I was able to help, thank you to my husband my children who are great people.
Thanks to my neurosurgeon that I will see again soon.
Thank you to the nursing staff and even more for several months.

Take care of yourself and allow time to time.
Don't do like me. Do not try to burn the steps.

Note of the association : Thank you to Carine for her very beautiful testimony, this painful course where, for those which have been operated, images and sensations will be common. Carine has not taken an androcur or progestins, but the clomifen (clomid), or clomifen, is a structural analog of estrogens. This study makes a probable link between the drug and meningioma (but I found only one, therefore prudence https://link.springer.com/article/10.1007/S10014-012-0088-y )

The fact remains that Carine has a course that is interesting for all of us:

Carine 46 years old, 1 meningioma - 4 operations

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