Live with a meningioma
Responses by Pr Hugues Loiseau, neurosurgeon, to patient questions
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).
Hugues Loiseau, professeur de neurochirurgie au CHU de Bordeaux : A mon sens non. Le seul risque (faible) serait de faire une crise d’épilepsie.
What drugs are contraindicated in case of meningiomas? If not the progestins of course!
HL: Those with anti-Androgenic activity, like some diuretics (Spironolactone for example).
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?
HL: Regarding the Lyrica, it is indicated side effects such as suicidal ideas (see adverse effects).
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?
HL: It all depends on the duration after radiosurgery. There are quite many therapeutic options concerning neuropathic pain.
Does edema that develop around meningioma regresses at the same time as meningioma? What is the impact of edema?
HL: Yes, edema must be absorbed. Brain edema can cause epilepsy attacks, although this is rare.
When you stop all progestin, how long does it take to decrease meningioma? At what rate? Does he regress at the same speed he has grown?
HL: Meningiomas decrease by around 30% in the first 6 months, in the vast majority of cases. We don't know very well how fast they get bigger.
Furthermore, is the progesterone that we naturally produce influence the evolution of meningioma?
HL: In my opinion no.
When we talk about meningioma we talk about tumor that starts from the meninges if I understood correctly. There where I do not understand it is how then is it that this tumor can infiltrate or include a trigler nerve. This is my case. Does that mean that it completely penetrates the nerve. Thank you in advance.
HL: The relationships between the tumor and the trijumeau nerve are variable. It can be considerably distorted and therefore injured by the tumor.
DOULEURS – CICATRICES – FATIGUE
What exactly happens and in understandable terms, at the scar level so that it is bad more than two years after still on the scalp. I still haven't really understood the explanations.
HL: A skin incision leads to the section of small nerve fibers conveying the sensitivity of the scalp. Their regrowth often leads to bizarre sensations that are sometimes unpleasant that decrease over time.
In the brain, where the tumor was, is it water that stays instead? Does this lead to an imbalance that causes these residual vertigo?
HL : La nature ayant horreur du vide, le volume libéré par l’exérèse de méningiome est comblé, d’une part par le cerveau qui « regagne sa place » et par le liquide qui entoure le cerveau (i.e. liquide cérébro-spinal).
Why do we keep fatigue for so many years?
HL: Getting to say that you have a tumor in your head is meaningful, consumes a lot of mental resources and can be accompanied by depressive symptoms whose fatigue can be part.
Il y a aussi des douleurs désagréables au niveau des 2 cicatrices que j’ai sur le crâne, perte de mémoire et d’équilibre.Les douleurs neurologiques (hypersensibilité, sensation de mal de dents par exemple) finissent-elles pas s’atténuer, le cerveau arrête-t-il d’envoyer le message de douleur un jour ?
HL: Yes, in the vast majority of cases
Evolution of the Sequelles
Suffering from neuropathic pain following a paresthesia left leg consecutive to the excision of a meningioma two and a half years ago can I still hope for a favorable evolution and see the neuropathic pain disappear?
HL: Yes, especially since there are several treatment options for such pain.
Peut-on observer un changement de personnalité en raison d’un méningiome quelque 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 ».
HL: Yes, of course! The announcement of a brain tumor inflects the course 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 ?
HL: The vast majority, but there is also a question of location. Under these conditions, a low percentage (but not zero) continues to grow. Information concerning the decrease or that concerning growth can be objectified between 3 and 6 months.
Risks of recurrence after operations and full stopping hormones? Are there statistics?
HL: Not to my knowledge, in this combination (stopping hormone taking - it all depends on which) and surgery (it all depends if the meningioma has been completely removed).
Do you notice an evolution in the number of cases of meningiomas throughout your years of practice?
HL: There is a single specialized register in France concerning brain tumors (in the United States, there is the largest world register, but the androcur is not marketed). The increase in the Gironde register is around 4% per year. The main factors of this increase are the aging of the population and access to medical imaging.
How many cases do you think you have in your service?
HL: Thirty.
Do you have grade 2 or 3 meningiomas in those due to Androcur?
HL: Yes, 1 single.
How many cases of meningiomas may have due to drugs as a percentage of cases listed in your hospital?
HL: probably less than 20% of cases.
What do you think of the analysis of the tumor to progesterone receptors?
HL: It is not enough.
Foreign research
Another question: are research on this subject only in France or other countries already worked on these subjects?
HL: The "hormone-dependent" character of meningiomas, although the term was questionable, appeared with the first works on meningiomas around 1930.
Relations between hormonal and meningiomas are studied in many countries with fairly contradictory results, sometimes. This is due to the difficulty of accurately drawing up the treatments in terms of duration and molecules (while knowing that they are not the same between Europe and the United States).
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?
HL: Not to my knowledge. Women have a known propensity to develop thyroid pathologies.
We warmly thank Professor Hugues Loiseau for taking the TMSP for answering our questions.
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