Live with a meningioma

Answers from Pr Franck Emmanuel Roux

En l’absence de signes cliniques graves, comment doit-on par précaution s’organiser pour que la présence des méningiomes soit facilement connue des secours ? (Ex : garder le CD de son IRM sur soi ? Une copie papier ? S’inscrire sur une liste auprès des SAMU ? (Existe pour des pathologies cardiaques))
je fais partie des non opérées car « asymptomatiques » soit: fatigue, vertiges (terminés depuis l’arrêt de l’Androcur et une petite diminution de taille du gros méningiome sur les 5- et surtout une diminution de l’œdème cérébral)

Pr Franck Emmanuel Roux, neurosurgeon at the Toulouse University Hospital:

Generally and unlike "cardiac" pathologies, Samu is rarely used in cases of meningiomas (except sometimes for a first epilepsy crisis). However, you can keep your CD. No registration with the SAMU.

 

What drugs are contraindicated in case of meningiomas? If not the progestins of course!

Few drugs are contraindicated except well on progestins. Your attending physician can find out about the medications you take but in the vast majority of this does not pose any concern.

 

Hello I do not know if a neurosurgeon can answer this question. What is happening in our brains is complicated between chemistry, meningioma, emotional ... Is my question: can Lyrica induce depressive states and if so can it be replaced by another molecule? How can we know if it is linked or not to study on this subject? Another question that joins that of another member. An inflammation linked to radiochurgery on a meningioma includes on the nerve of the trigeminal causing predominant neuropathic pain in the territory of the right V 1 can be absorbed over time?

For the Lyrica, it can happen and its replacement is to be discussed according to the symptoms and why it was prescribed. Yes for the second question. Neuropathic pain can fade.

 

Est-ce que l‘œdème qui se développe autour du méningiome régresse en même temps que le méningiome ? Quel est l’impact de l’œdème ?
À l’arrêt de tout progestatif, combien de temps faut-il à un méningiome pour diminuer ? À quel rythme ? Il régresse à la même vitesse qu’il a grossi ?
Par ailleurs, est-ce que la progestérone que nous produisons naturellement influence l‘évolution du méningiome ?
Mille Merci pour ce travail que vous réalisez au quotidien pour nous accompagner dans cette étape de vie.

Many questions: In summary, edema can decrease of course but there is not always a direct relationship. This edema can of course disrupt certain brain functions or be without consequences. The decrease time is variable: you have to give yourself a few months. But you must also have in mind that sometimes meningiomas do not decrease. For our own progesterone, there is a link that has been discussed in many studies which is in summary possible but weak.

 

When we talk about meningioma we talk about tumor that starts from the meninges if I understood correctly. Where I do not understand is how then is it that this tumor can infiltrate or include a trijumeau nerve. This is my case. Does that mean that it completely penetrates the nerve? Thank you in advance.

Because the trijumeau nerve is in close contact with the meninges.

 

DOULEURS – CICATRICES – FATIGUE

Que se passe-t-il exactement et en terme compréhensible, au niveau de la cicatrice pour qu’on est mal plus de deux ans après encore au cuir chevelu. Je n’ai toujours pas vraiment compris les explications.
Dans le cerveau, là où était la tumeur, est-ce de l’eau qui reste à la place ? Est-ce que cela entraîne un déséquilibre qui cause ces vertiges résiduels ? Dernière question : pourquoi garde-t-on de la fatigue durant tant d’année ?

The explanations on the scar pains are multiple; It is believed that it is the small nerves at the level of the skin that has been cut that make "suffer". However, non -somatic reasons (stress, anxiety, etc.) can intervene.

The brain resumes either its entire place or partly. There is indeed "water" (cerebrospinal fluid) instead. Fatigue is variable but if there is no more meningioma in general the causes of this fatigue are to be found in the impact on life that has the care of meningioma: stress, anxiety, concerns, sometimes family upheavals, loss of jobs, etc.

 

There are also unpleasant pain in the 2 scars that I have on the skull, loss of memory and balance.

Previous response. For balance it may depend on the location of meningiomas. We can also have balance disorders for any other reason than a meningioma.

 

Do neurological pain (hypersensitivity, feeling of teeth for example) ended, does the brain stop sending the pain message one day?

Difficult question. Yes one day ... The question is too "large" for a simple answer in a few words.

 

Evolution of the Sequelles

Souffrant de douleur neuropathiques suite à une paresthésies jambe gauche consécutive à l’exérèse d’un méningiome il y a deux ans et demi puis-je encore espérer une évolution favorable et voir les douleurs neuropathiques disparaître ?
Peut-on observer un changement de personnalité en raison d’un méningiome quel que soit son positionnement ou seulement dans certaines localisations bien précises ?
Je viens de chercher, et en effet : « Lobe frontal – Ce sont les hautes fonctions, mémoire, jugement. Les tumeurs du lobe frontal peuvent provoquer des changements dans la personnalité, des difficultés d’élocution. »

Yes it is a bit the answer made to Nathalie and Céline. Yes sometimes there are personality changes. It must also be understood that with the very time at "little noise" we evolve slowly sometimes even without meningiom. We are not all made only of blood and flesh but also of spirit and the fact of being suffering from a pathology can modify our vision of life ...

 

Meningiomas and Androcur

Statistiquement dans le cas des méningiomes « androcur », combien diminuent a l’arrêt du traitement, et combien continuent à grossir ?
Au bout de combien de temps sait-on si ça diminue ou non ?

We consider that the majority regress but that does not mean completely. Time is variable. It also seems to depend on the doses used, that is to say that there is more risk of having meningioma after having used high doses of Androcur and for a long time.

 

Risks of recurrence after operations and full stopping hormones? Are there statistics?

The “Androcur and Meningioma” phenomenon is quite recent and therefore you have to give time to research to provide studies and help this research. Because the risk of recurrence depends on many factors and not only on androcur and time (complete surgery or not, Meningioma analysis parameters etc ...)

 

Do you notice an evolution in the number of cases of meningiomas throughout your years of practice?

Oh yes ! The Androcur alas brings us quite numerous patients.

 

Combien de cas pensez-vous avoir dans votre service ? Avez-vous des méningiomes de grade 2 ou 3 dans ceux dus à l’Androcur ? 
Combien opérez-vous de cas de méningiomes possiblement dus aux médicaments en pourcentage de cas répertoriés dans votre hôpital ?
Que pensez-vous de l’analyse de la tumeur aux récepteurs de la progestérone ?

With each consultation I happen to have a case linked to Androcur - very frequently. And in any case I ask the question to the consultants. Last Monday I had 2 patients whose pathology could be linked to Androcur. Grades 2 are very rare. But you know the definition of grade 2 also varied over time.

 

Foreign research

Another question: are research on this subject only in France or other countries already worked on these subjects?

And yes, he has data in other countries of course; similar to ours.

Treatments

Is there a reliable and serious study concerning the undesirable effects as a whole by type of treatment and also taking into account a specific overview of the development of nodules (including thyroid) with this type of treatment? Several people ask themselves the question. Could they/ they mention the study's references?

The question is very large. Finally, the fact of gathering in association, to make yourself known, will advance research. Because really the real difficulty of this research is to identify the people affected and follow them. And this exhaustively ...

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