Questions/Answers with
Charlotte Planchon, neuropsychologist
At the Bordeaux CHU
We organized on September 16, 2024, by Zoom, a meeting with members of the association, in order to answer a maximum of questions on what a neuropsycholoçue is and how it is useful within the framework of meningiomas.
We warmly thank her for the time she has devoted for all of us.
Transcription by Delphine, delegate Hauts de France
QUESTIONS
What is a neuropsychologist?
He is a psychologist, not a doctor. It is a psychologist who is more specifically interested in the relationship and relationships between brain structures and the functioning of an individual. That is to say the cognitive functioning, with everything that will be attention, concentration, memory, language and many other things. And the emotional functioning too, since it remains a psychologist.
So the neuropsychologist is interested in mood, morale, etc. Individuals and also social functioning because we evolve in society, that we are social beings. So in relations to the other which can be affected both by psychological disorders (anxiety, depression, etc.), but also by pure cognition. That is to say that there is a part of social cognition, without going into details. All these functions are managed by the brain.
What is the difference between a so -called classic psychologist and a neuropsychologist?
A classic psychologist is not going to have the theoretical and practical tools to assess cognition, all that is attention, memory, executive functions, language, etc. The classical psychologist has tools that the neuropsychologist does not have.
What is the course of an evaluation session with a neuropsychologist?
The word evaluative is important because it is not a word that we hear a lot for a consultation in psychology. During a neuropsychology assessment (you should know that psychologists are not paramedics, they do not work on prescription), they are free access and you can make an appointment with a neuropsychologist of yourself and the goal will be to make an inventory.
The evaluation consists first of all in a part of interviews: we will ask questions to better understand the person, to better understand his life story, his complaints, which is fine, which is not well etc. Then, the evaluation part consists of computerized tests or paper /pencil tests.
There is absolutely nothing invasive: the aim is to assess more or less exhaustively, certain brain functions, to assess cognitive functions. It can be through attention tests, memory tests. You should know that there are several types of memory:
- short -term memories,
- Long terms memories
- and other functions such as executive functions,
Executive functions are high -level functions, which are asked when the environment changes.
When you are in a routine situation, you are in "automatic pilot" mode so you do not request them. And as they are high -level functions, they are quite fragile.
When there has been an operation or irradiation of a meningioma, that's often what stands out.
After the evaluation, we do an analysis of this assessment, to try to find the origin of the difficulties: is it linked to the brain lesion? Is it more related to thymic disorders? Therefore anxiety, depression etc.
According to what emerges from the analysis, we guide differently. If the origin is really strictly organic, one can orient towards a rehabilitation or a mediation (it carries different terms): whether with a neuropsychologist or with a speech therapist.
If however the origin is rather psychological, which does not detract from the disorder, at that time the orientation is more towards a psychologist to take care of these disorders of psychological origin.
Where to find a neuropsychologist and what cost?
Neuropsychologists can work in liberal or in the hospital. They can be free access to the hospital, for patients supported in the service. In Liberal, it takes between 200 and 400 euros, depending on the region where you are looking for the balance sheet and depending on the completion of the balance sheet. The more complete and pushed the assessment, the more expensive it will be.
It is not taken care of by Social Security, when it is in liberal. Some mutuals can take care of either a number of sessions or the complete assessment. But social security does not take care of these balance sheets, even if the assessment is prescribed by a neurosurgeon.
There is a new protocol of liberal psychologists, by social security, but the balance sheets are excluded.
How does a neuropsychological assessment take place?
On my hospital activity, it takes approximately 1 ½ hour of assessments, with the maintenance phase of about thirty minutes and 1 hour of tests. This can be more depending on the needs. Then there is an analysis phase of this assessment and I after, in the hospital (but in liberal they do differently) I do the return by mail. And if necessary, patients call me or contact me to discuss this assessment.
I know that in liberal the restitution can also be the subject of an appointment, which is often included in the price of the balance sheet, and the rendering is made in face -to -face.
I also insist on hospital neuropsychologists: they can be sent by neuro surgeons or the patient can express the complaint and be addressed to a neuropsychologist. It depends a bit on the operation of each service.
The speech therapists can also prescribe assessments, which are taken care of by social security.
Can ALD intervene in the balance sheet?
No there is no care, even if we regret it.
What types of care can neuropsychologist offer on the basis of its tests?
It can offer a remediation of difficulties, rehabilitation of difficulties.
Rehabilitation is either a re -training of functions that have been "damaged" by the medical event or its treatments; Either it will be a bypass of difficulties. So a regerity but by bypassing so that compensation is less expensive.
Often patients start to compensate for themselves, to get around their difficulties. But as they do not necessarily know very well the functioning of their brain, compensation is not always very efficient. And sometimes it spends more energy than it should be. Sometimes it is also compensation by external aid: because it seems very stupid, but the use of an agenda, for example for a person who has spent 40 years of his life without using it, that is not self -evident. So it will be learning to use external help. But otherwise, the idea is really to reread the functions.
I wonder a lot about the residual fatigue and the feeling of loneliness generated by meningioma.
The question is short but the answer is not.
You have to ask yourself the question: for how long this fatigue has been there. Indeed, there can be a before/after and fatigue can improve but never recover at the previous level. It is indeed a possibility.
Afterwards, you have to see with the level of fatigue what is really preventing or not. Because it is true that the fact of not being as before, there is bound to be a time of adaptation but after it is "what am I no longer able to do?" ». It is a vast question.
Can osteo-meningioma cause memory disorders, brain fog and attention deficit? Can the operation have consequences of this type?
Anything is possible. Then a neurosurgeon could tell you about it better than me, but an osteo-meningioma, as the name suggests, will rather go to attack the bone. But its development can also compress the brain and anything is possible. The brain fog, the cognitive fog, this had been described the first times especially in chemotherapy treatments for cancers. But it is true that it is a term which is quite clear and that speaks to many people.
So it is true that it is related to this fatigue because - good when I speak of fatigue, I speak of fatigue linked to a meningioma and treatment, not of fatigue in the common sense - when you are tired, your whole brain is not able to provide resources for the smooth running of tasks. So that is to say that you are going to have a less good short-term memory and if you come to memorize in the short term, problem solving will be much more complicated. The concentration in itself will be more complicated, you will be slower, you will have trouble selecting the right information etc. So this cognitive fog has a somewhat diffuse effect in the daily life of patients and it is really related to fatigue and concentration disorders.
Normally the cognitive fog, when it is related to chemotherapy, improves when stopping chemotherapy. But in the case of meningiomas - then studies are not all consensual, but there are certain studies that show it - that there can be long -term cognitive effects. Without necessarily talking about the worst but there are even cases of dementia following radiotherapy. Years and years later. So it's still that there is an effect on brain operation.
Is the non-conscientization of the loss of cognitive faculties is a known consequence of the Méningioma made?
So yes it's anosognosia . Anosognosia is not to be aware of its difficulties and it is generally linked to the location of the brain injury. It is rather a frontal lesion which does not allow this decline to realize that one is in difficulty. And there is the counterpart too, that's what is called anosodiaphoria: we are aware of our difficulties but we don't care. And that too is linked to a rather frontal lesion. So for that there can be an awareness work, this is especially what is called psycho education. That is to say, to make his difficulties aware of starting to work on them. Because when you are not aware of your difficulties, there is no reason to improve them in fact. It is often at the request of loved ones, it is never at the request of patients. But yes it is not denial as we hear, that is to say a psychological reaction, it is a physiological problem.
Is there a correlation between brain tumor and depression?
Yes in both directions. There is no study on the fact that a depression brings a brain tumor. However, the brain injury can bring depressed syndromes. And there it is quite complicated to take care of because either surgery improves and lifts depressive syndrome because there is no longer the brain injury in question, or no. These depressions are rather resistant to treatments. These are depressions called organic, and which are linked to brain damage. But there are many patients who come through the psychiatry department in fact and who find that depression is rather atypical and who prescribe imaging examinations and who find a brain injury behind that.
There is also indirect level: learning that you have a brain tumor, it can bring depressed syndrome without necessarily talking about the organic character of depression. In brain tumors there are several types. It is quite common, depressions, in people with meningiomas. There are studies that show that following surgery, despite improving physical, cognitive symptoms etc. He can set up a depressed syndrome. There are several factors that contribute to a depressive syndrome, which can be the lack of perceived social support, such as the isolation of mental and moral suffering.
Because it is a disease, a health problem which is not very well known , which rather brings an invisible handicap so which does not lead to the understanding of others either. And as, indeed, it is said that it is benign, once the surgery has passed, loved ones think that "it's good, we move on to something else". So there may be a lack of social support by the family, the employer also because the employer is not better informed about the problems of meningiomas.
On depression, there is social support which is important in these depression there and there is also at what stage of life it occurs. Meningiomas more often affect women, at a little hinged ages, both professional and personal life . It is more or less for menopause etc. So questions that can happen in these women there at that time. There can also be several events that happen in life and meningioma rushes all that . And is also at the origin because probably that without this trigger event there, there would have been no depressive syndrome. It comes to catalyze and trigger a depressed syndrome and then it is difficult to get out of it alone without psychological support.
Are anxiolytics and anti-depressants effective in this context?
I am not a doctor and I cannot judge. I know there are several anti -depressant treatments. Some can be ineffective, and it requires being substituted for others. For any depression - there we are not talking about meningiomas specifically - the best therapeutic strategy for a depressed episode, it will be both psychological support and anti -depressant treatment. If some want to do without the anti -depressant treatment, I have no problem with that. But in the best support, there is still psychological support. Anxiolytic and anti -depressant treatments alone will not be enough.
What can we face with the misunderstanding of frightened and angry relatives? And on the consequences that they do not prefer to know?
For the misunderstanding of loved ones, it is still necessary to be able to discuss it. Because we cannot ask questions about what we don't understand and what we don't know. So it's a whole work of dialogue between the patient and his loved ones and it is true that it is complicated because re -explaining without feeling judged, without victimizing himself either. So it's very complicated.
More and more there are explanatory plates or caregivers are there to explain the impact of a meningioma and the repercussions they can have. We must discuss it because the misunderstanding of loved ones - again we are talking about invisible disability, rare illness - therefore necessarily loved ones do not know and do not understand if they are not explained to them.
It is sometimes difficult because, sometimes, loved ones do not prefer to know nothing ... Sometimes it suits them to know nothing, because we do not change anything compared to their requests. Sometimes I see patients who are in difficulty because they must maintain the same level: manage children, manage their work and all the constraints, as they did before meningioma. And the family, indeed, does not understand that she suffers but at the same time she continues to do so.
I hear that it is difficult to explain, but sometimes there are family models that some prefer to see maintain and they do not ask questions. It depends on the personalities of relatives too.
Emmanuelle: Do you have the same reactions in men who have meningiomas. Do you have the impression that each other's issues are the same or not depending on sex?
Ms. Planchon: So I would not say at all but because the roles in society are not the same depending on the genre. We know that women do not have the same responsibilities in the household as men but that's societal. And it's the same, culturally, women are rather mothering and therefore they will tend to take care of their sick husband etc. This role is not common in our current society for men. So there is also the cultural parameter that does that.
What about all of this?
Emmanuelle: The employer who considers us as unreliable, even potentially dangerous, who push you to resign and end up dismissing you. And the inability to exercise your 30 -year profession, difficult professional retraining with an RQTH where the only proposal proposed is the invalidity pension. So here we are no longer in the personal side ... The woman who takes care of children, etc. But in the professional side
Ms. Planchon: There it actually lacks support in relation to the situation experienced by this person. Normally at the regional level there is what is called Ueros Evaluation and Restification Unit for socio -professional orientations , these are structures that specifically support people who have brain damage, so not necessarily of tumor origin, it can be following car accidents, strokes etc. and which often make the interface between occupational medicine and the patient who has cognitive or clinical sequelae of his cerebral lesion and can intervene - then not in the company because they do not have the legitimacy to do so; It is rather occupational medicine - but if ever adaptation to employment is not possible it will be a dialogue with occupational medicine to allow the maintenance in employment because it is always easier to maintain in employment even if it means changing or readjust the position etc. What to look for a new job when you have difficulties. After if it should go through the search for a new job, they can help following an assessment from every angle, there are suitable training programs, to seek suitable employment.
Is it normal to always have anxieties despite psychological follow-up and have a lot of trouble falling asleep?
No, it's not normal. Arès you have to see what is follow -up, what work is done with the psychologist. Other psychotherapeutic techniques may perhaps help. I am thinking in particular of a post -traumatic stress syndrome which can occur following such an experience. It is an expression which is more and more talking about in the medical and paramedical world. However, a medical event is still not recognized as a post -traumatic stress factor . I met a patient man with meningioma- grade 2 I believe- and who developed an important post-traumatic stress disorder following that. Because the surgeon - so I think he wanted to comfort him - had tried to say to him "you were hot" ... Finally basically, it almost was much more serious, and in fact since this event there he lives as if tomorrow was the last day. He no longer supports everyday futility and he is no longer adapted in his social environment at all. He no longer supports his family, etc. Because everyday life is also made of futility. And suddenly it is completely disconnected.
I would like to know what are the tracks to explore for anxious disorders that have manifested since my proton therapy: strong legs of the legs, especially in situations of public speaking, conflict or stressful situations that I manage perfectly before. From my own initiative I did hypnosis without managing to master the problem, or to really understand its origin.
There may be a feeling of vulnerability linked to the occurrence of a health problem and its treatment. Which means that, at some point, we may have felt in difficulty. And then the brain recorded that such a situation leads to such difficulty. Suddenly there is a repetition of anxious symptoms even when it was well managed before. For that, cognitive-behavioral therapy are rather effective. TCCs, by the progressive situation, by different techniques will allow us to recover while controlling this anxiety. So more than hypnosis, they are rather cognitive-behavioral therapies. In this case, it is typically that could be effective.
Dialogue between members and Mrs Planchon
Intervention of a member: when I went to see my neurosir this summer, she asked me how it was and I started by telling him that I was tired, that I had vertigo etc. I explained to him that I had a before and a after meningioma and that I had to mourn the energy I was ... So certainly I will be 50 years old and age can also explain but until present I kept the road we can say. And for 2 years that I have meningioma, with the 30 radiotherapy sessions, I have never been the same again! And I was put in disability 1, I work part -time. I tried to work full time and it was a disaster. It is not that I listen to myself too much but it is that I can no longer in fact. I can only do 1 activity per day and therefore the neurosir swept by saying that it had nothing to do with meningioma. And that probably it would be good if I went to see someone because I was probably depressed .
Ms. Planchon: So it may not be meningioma but it may be radiotherapy. Fatigue is still a known effect of radiotherapy, including months after ... I don't know when this radiotherapy dates?
Member: January 2023, therefore between 1 year ½ and 2 years
Ms. Planchon: So yes it is possible that it is the radiotherapy that is related to this fatigue. So without excluding meningioma but it is fairly known for that. Afterwards, the recovery of your energy level before-as you said, you mourned it-but after "What is your level of fatigue prevents you from doing?" Obviously it is a lot of things since you can only do one activity per day.
Membership: Yes clearly! I get up at 11 am in the morning, I take a nap the AM and go to bed at 9 p.m. in the evening. So when I was full of time I just went to work and sleep. So at 50 I find it surprising to have the life of an elderly person. Even my parents are more active ... so ...
Ms. Planchon: You are not followed by your radiotherapist?
Adherent: not because it only follows cancer cases and as mine is benign, as they say ...
Ms. Planchon: Because, suddenly, a hormonal assessment may also be good because depending on the irradiation site, there can be an impact on hormones and your energy.
Member: it is indeed a track because it was 2 mm from the a priori pituitary gland. So there is an endocrine assessment that is requested every year. For that of last year, I was not recalled by the radiotherapist so I imagine that it went well. I have never had the results of my endocrine assessment for example
Ms. Planchon: And your endocrinologists say nothing in particular?
Member: I have not seen anyone; I just took stock. There is not much follow -up once the care has passed. I felt a lot of misunderstanding and "Madam, it is undoubtedly that you are depressed" and "you have to be treated". I have nothing against the fact of being treated psychologically, I am quite open to that but when I got out of the appointment, I wrote on the Amavea site, on the Facebook page to share this experience and there have been more than 100 reactions. Many women found themselves in the testimony that I was doing since, clearly, they had also been told that this fatigue had no need to be, that she had nothing to do with meningioma and ... After I did a lot of orthoptic and vestibular rehabilitation and he told me that it was also a factor of fatigue since the brain spent his time removing.
Mrs. Planchon: And so that's the feeling of loneliness you are talking about. It is more loneliness in front of the medical profession
A member: Yes it is in front of the medical profession who made his taff and who does not see our fatigue, who thinks that it is we who listen to ourselves a little too much and who put us in a victim role ... while I am someone quite dynamic. If I need to question myself I can do it. But it is this feeling of loneliness of not feeling really heard. When we say that we are tired, be able to admit it and that it is a little reassuring instead of saying me "But finally, look, you are lucky, your meningioma begins to reduce". Well that's good news but ...
Ms. Planchon: The sectors are organized differently according to the hospital sectors so sometimes it is not a very specific sector and suddenly the route is not coordinated. But maybe your attending physician could make the link between these different specialists ... and the endocrinologists, it was in liberal or in the hospital too?
Member: I did in the hospital but I did not see endocrino. In fact I just did a blood exam in the lab and I was told that I would be reminded. And I didn't have any news. So I imagined that if I was not remembered it is that everything was ok.
Ms. Planchon: See perhaps with your doctor to contact a hospital endocrinologist. To at least have his opinion because if the pituitary gland was not far there is still risks.
Another member: I wanted to add that I was made with a meningioma in 2018 and that since, fatigue has been there. Over time there are periods when we are less tired and then there are periods when a beautiful wave of fatigue arrives as we have never known before the operation. And I also meant that the neurosir thinks that no ... But if it is a fact. And this fatigue she talks about loneliness and it is fatigue that others do not really understand because they do not know it. When you are in a period of fatigue, they do not realize that you can sleep all day, the next day we will be so punctured. That's it, that's all I wanted to say!
Ms. Planchon: Yes, but fatigue and cognitive disorders, etc. It's part of what is called invisible handicaps. If you are cut off a leg, we are not going to ask you to run a marathon, when indeed, fatigue, no one sees it. And then it is in everyday language because everyone can be more or less tired etc. But as you say it is not the same fatigue. The others did not experience this fatigue there so they compare compared to their references, and it is necessarily biased.
Emmanuelle: As a human being you can only compare in relation to what you know, what you have experienced yourself. You are right. I also live it: the fatigue that we feel after being operated on has nothing to do with the fatigue that we had before. I compare for example to before; When I had young children, and I lived in Paris, that I was going to work when the children had not slept ... I was tired but fatigue after being operated on it has nothing to do. It's something else ... it's a notch above
Ms. Planchon: Yes absolutely! It is a brain fatigue and it is true that even if meningioma is no longer there you still suffer the fatigue of meningioma because it is not because meningioma is only there the brain instantly takes up its capacities. And the fatigue of surgery itself. Normally you recover in the weeks following surgery but it is also decompression. As much as meningioma can take years to grow, so much surgery is done in a few hours. So the brain does not necessarily have time to enhance itself quietly and it may also not get used to it. That is to say, the pressure exerted by meningioma may have caused irreversible damage.
Member: I was operated in February 2024 and I am part-time therapeutic, I remain quite tiring with days when I feel like I have a big potato and then others when I am completely down. And what I find difficult from a psychological point of life compared to my children, my husband, my family, is indeed to have come out of this situation of having been operated ... Everyone was very caring for me for the duration that it was necessary and it is as if today I no longer felt legitimate to share this fatigue. It's as if ... I'm sorry that moves me but I find that it is not easy. I am a teacher and I resumed half-time therapeutic but for the moment I only take care of the training of teachers and trainees because I am lucky to have this trainer cap; Which avoids me to be in class. I really apprehend the moment when I will have to go back because I have the impression that the noise, the hubbub. Stimulations help increase fatigue
Ms. Planchon: Yes, this is particularly true for teachers where attentional resources need to be rich. There, as you say, you can do a half with adults and suddenly it is visibly going well. After the apprehension of return to class is legitimate ... Teachers you have a little special sick leave ... This therapeutic half-time can last for how long?
Member: it is renewable for 1 year but I have to go see an approved doctor every 3 months. So I hope to be able to renew it for this school year but I am dependent on the authorized doctor.
Ms. Planchon: Yes and it's every 3 months more? You are not quiet for the whole year. And after there is not a system where you could try, when you expire your therapeutic half-time let's put at the start of the next school year in September ... so try and if it ever goes bad, is there an alternative?
Membership: I inquired: we can apply for disability recognition from the MDPH to have a work layout that would eventually allow me to resume full -time, but with a trainer cap, if it was decided by the institution.
Ms. Planchon: So there are indeed tracks if the resumption of the class is not possible; Either to spend full time as a trainer or after, there are partial invalidities. I no longer recall who talked about it earlier, which keep working time less than a full time. I think that in National Education it must be possible too. But it is true suddenly that you put pressure every 3 months -namely if it will be renewed -it is already difficult to manage while if we left you the school year to recover -, because it takes time to readjust yourself to work.
Member: Yes there is that, the psychiatrist side and us, in our therapeutic half-time which are renewable, we must share the renewal 1 month before the recovery so it actually leaves 2 months each time to question ourselves, know if we are capable or not.
Ms. Planchon: Yes absolutely and then it puts pressure. And the psychological aspect is not trivial either. Because it strengthens guilt. This is what you said earlier, that you no longer felt legitimate to request help and empathy of your loved ones in the face of your difficulties. However, the difficulties are still there, they are not going overnight. These are slow processes. The brain is an organ that is very slow. For example, following surgery it takes no less than 2 years to recover therefore.
Brain plasticity is a process that is long so you have to take the time ... And it is true that if, during this recovery period, events are added like anxious disorders, fatigue, etc. The brain cannot recover as much as possible. So it can, suddenly, be slower.
Another member: in fact I think fatigue is due to cognitive fatigue. From the moment when we did not find its cognitive operation before ... So me before I don't know when it dates because I had a big meningioma which was detected very late so it was for years that I was tired. We make superhuman efforts to compensate, to adapt, to succeed in doing what we did easily before and suddenly, it's exhausting . It's trying. So it was my remark. And my question is: suddenly I was evaluated, we noticed it because I said to myself "it is not possible, I do not work as before". I made it note by a neuropsy assessment which confirmed it and suddenly I was prescribed speech therapy sessions that I have not yet started. It's been 3 years since I was operated on and years probably that I was lying with this meningioma. Does brain plasticity, after 3 years at more than 60 years-I am 62 years old, is that? Is there hope? Are speech therapy sessions effective?
Ms. Planchon: Brain plasticity only stops when you are dead. The brain is plastic, because the learning process is brain plasticity. So as long as you continue to learn things, your brain is plastic. It is certain that the recovery margin of the medical event - the more we move away from the episode, the more thin - but that does not mean that it is zero. That is to say that "yes" the speech therapy sessions may allow, as you say earlier, to concentrate and to be less tired to do the same tasks. Because as I said earlier, sometimes patients, as they do not know how the brain works- which is normal- try to compensate but it is not a very efficient compensation which makes it very expensive on the energy level. So it can already be compared to that, make tasks less expensive by teaching you to compensate better. So this is already brain plasticity because as soon as you change your behavior, it is that your brain integrates and learns that. But after yes you can completely rework with in particular - I think of the memory of work because you quote it - yes you can recover. This does not mean that you will recover the front level but the idea is to recover at a level that is acceptable to you.
Another member: it was done but at the cost of a concentration which is itself exhausting
Mrs. Planchon: Yes that's it! So work will be to reduce the cost of these tasks.
Another member: and therefore to bounce back on fatigue, I think that part of our fatigue is linked to that. We often have cognitive processes that are a little altered. Particularly in communication functions like speaking, for those who regain work, and that suddenly we are exhausted.
Ms. Planchon: Yes absolutely. And after, sometimes, it's the same task will ask you for more effort, in fact, you will empty your batteries faster than before or compared to others or you have a slowdown - you think less quickly etc., and suddenly to accomplish the same task, instead of spending 30 minutes to go there ¾ of an hour. So you will necessarily be tired. And if you compare compared to the task, you will be more tired to do the same things. But fatigue, cognitive fatigue etc. In any case, I put them a little in the same definition. It is the brain that is under all this anyway. But yes n you can go see a speech therapist. It's tiring because it's binding and it requires energy but I think you can win on certain aspects
Emmanuelle: And for speech therapists it may be good to say that they must be specialized in neuro because they are not all.
Ms. Planchon: Yes absolutely. So there is a whole fringe of speech therapists who are only addressed to children so that, they tell you at the outset. After that it is delicate because either they know how to do it and they take the patients, or they do not know how to do it and they say it straight away. But it is true that we must specify when taking up meetings, when searching for a speech therapist that you want to have a so -called Neuro rehabilitation
Emmanuelle: Yes I specify it because it was complicated. I had to learn to talk about it in a total way. But the first speech therapist had taken me when in Neuro she knew nothing about it and it made me waste time.
Ms. Planchon: It is that she should not have accepted. And there I see a message in the chat: "I felt myself infantilizing". So yes it is sometimes a bit of the speech therapists. They are used to working with children and it is true that to do this rehabilitation work but with adult equipment and having a behavior in front of an adult, they are not all able to do that. And often these are exercises that can quickly seem academic so the practitioner must be very vigilant on this aspect of infantilization. Because you don't go back to school. The idea is to work on functions that have been altered due to a lesion, treatment or anything but you do not return to school
The tsunami and the sword of Damocles
How to face psychologically in the face of such a tsunami in his life and this sword of Damocles? Even my general practitioner, in a completely involuntary way can have very disturbing words that demolish me for 10 days. For example "we cannot remove the anti epileptic because there is still the tumor", an element that my neurosurgeon has never confirmed it. Trying to catch up when he saw my decomposed face: "But it remains anyway" or then "I have never seen such a important tumor". For my part I get help by a psychotherapist, she is a specialized psychologist TCC to help me cope. I also do sports because I am lucky to be able to do it despite a visual field deficiency and well -controlled epilepsy at this stage.
For the management of anti epileptic treatment you must see a neurologist. If there is a wish to stop, if there is a question to stop anti epileptic treatment there is only one neurologist who can make this decision there; Or a surgeon neuro but he is certainly not the general practitioner. It can be more precautionary in nature and say that no, as long as it remains ... after its reasoning is understood. It is fully understood and I do not criticize at all but you have to see the specialist in question. If there are questions in relation to stopping anti epileptic treatment, you must see a neurologist. Which will carry out an encephalogram (EEG), which will see if there is a need to continue or not. Or also directly with the neurosurgeon. So me for anti epileptic treatment, I will rather be advised to see with the specialist.
Regarding the sword of Damocles: with the risk of recurrence, and therefore new interventions, this expression is often used by patients. Meningiomas are generally slowly growing - afterwards, some escape this rule there, but it is generally slow growth - and once it has been discovered and treated, it is more or less watched.
Living with this risk of recurrence there and with this surveillance, perhaps even for life, it is learned. And indeed it does not learn alone. I think that it is very good to see a psychologist to precisely learn to manage this surveillance there and this risk of recurrence which ultimately after - it is the same, the risk of recurrence is not the same according to the aggressiveness of meningioma, depending on the volume of the residue, according to a whole bunch of factors - but to discuss it already with the neurosurgeon and to benefit from psychological support to learn to manage this.
It is a long process. But yes it is an event that upsets, hence the term "tsunami" which is quite well found. There was an American journalist I think - in California they are always afraid of the Big One, the earthquake they all expect with the fault - and in fact she had compared the diagnosis, the operation etc. From his Big One meningioma because his life was no longer the same after
Emmanuelle: Yes it's very interesting that. It changes us from the words "Benin" "no serious" used in France ... "we do very well" ... all these words that we always hear.
After it is always the same, there are people who, from the outside, are very happy with their work, because, them, from an objective point of life, have worked well: there is not much, the patient presents few visible sequelae etc. So they have an object of satisfaction.
But, as caregivers, we are not in the minds of patients who suffer fatigue, who sometimes suffer morale in the socks and that, indeed, there is only the patient himself who can live and undergo him. I am not saying that you have to be satisfied with it but that explains this gap between the outside and the patient's experience.
