Live with a meningioma
Responses from Pr Johan Pallud, neurosurgeon, to patient issues
In the absence of serious clinical signs, how should you be organized as a precaution so that the presence of meningiomas is easily known to help? (Ex: keeping the CD of your MRI on yourself? A paper copy? Register on a list with Samu? (Exists for cardiac pathologies)). I am one of the non-operated because "asymptomatic" either: fatigue, dizziness (completed since the stop of the Androcur and a small decrease in size of the large meningioma on 5- and above all a decrease in cerebral edema).
Pr Johan Pallud (JP), head of the functional unit of surgical neuro-oncology of the Ghu-Paris Sainte-Anne: the risk of having a serious and unexpected neurological event is extremely low. As with any other health problem, it is good to have in your bag, alongside your vital card, the medical elements necessary for understanding your health problem. Regarding the meningiomas, having a copy of the last report of MRI and the last consultation with the neurosurgeon seems to me sufficient.
What drugs are contraindicated in case of meningiomas? If not the progestins of course!
JP: Before any long -term medication, JP should be given to the doctor your history of meningioma (s). It is up to him to verify that the treatment he wishes to administer to you is compatible with your condition.
Hello I do not know if a neurosurgeon can answer this question. What is happening in our brains is complicated between chemistry, meningioma, emotional ... My question can the Lyrica induce depressive states and if so can it be replaced by another molecule? How can we know if it is linked or not and have we studied on this subject?
JP: Mood disorders are reported when taking pregabaline (Lyrica). If you are embarrassed, you must consider with your doctor if this discomfort can be linked to taking treatment. If necessary, the doctor may see if it is possible to change for another treatment with the same efficiency. You should never change your treatment of your own initiative without previous medical agreement.
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?
JP: Yes, it is possible to observe a decrease in pain over time. It is however very difficult to predict with precision if this will happen, since the decrease in pain will depend on the damage on the nerve, which can be induced by meningioma or by radiosurgery and whose recovery potential will depend on the nature of the damage.
Does edema that develop around meningioma regresses at the same time as meningioma? What is the impact of edema?
JP: Yes, edema regresses once the meningioma has been treated because it is the consequence of brain irritation by meningioma. The edema that sets in the brain - like water throats a sponge - compress the brain. It can therefore induce seizures of irritation by irritation of the cerebral cortex, induce neurological deficits by making the brain malfunction and induce headaches by the hyperpression it generates.
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?
JP: We usually observe a decrease from the first months of stopping treatment. The decrease and the rate of decrease are variable from one patient to another and are even variable from one meningiom to another in the same patient. There is therefore no rule and, consequently, surveillance should be adapted to each case.
Furthermore, is the progesterone that we naturally produce influence the evolution of meningioma?
JP: No, not to my knowledge.
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.
JP: A meningioma is a tumor of the meninges, which are envelopes around the brain. The cranial nerves, whose trijumeau nerve, must "cross" the bag of meninges surrounding the brain to go innervate. Thus, the Trijumeau nerve, its lymph node and its division branches are naturally surrounded by meninges during the crossing of the base of the skull. A meningioma developed at this place can therefore compress the trigler nerve and can even encompass it in the literal sense if all the meningege around is reached. Finally, a meningioma can come to join and infiltrate the wall of the nerve. In the end, the suffering of a nerve can come from its direct compression by meningioma, the reduction of its space of passage through meningioma, its infiltration by meningioma, an attack on its vascularization by meningioma and a mixture of all this.
Pain - Scars - Fatigue
What happens exactly and in understandable terms, in terms of the scar so that it is bad more than two years after still on the scalp. I still haven't really understood the explanations.
JP: It is usual to have post-operative feelings around the skin scar. It may be a loss or a decrease in feelings to the touch, abnormal and sometimes unpleasant sensations (tingling, swarming, flash), hot and cold sensation disorders or real pain. This is directly linked to the opening of the skin which has cut nerve fibers walking in the scalp. The cut nerve fibers account for loss of sensation. The nerve fibers "repel" then, that is to say that other nerve fibers colonize the skin territories, thus explaining improvement in a few months. The possible persistence of disorders permanently is explained by the imperfect character of the nervous regrowth, the replacement fibers which can be less efficient than the initial fibers.
In the brain, where the tumor was, is it water that stays instead? Does this lead to an imbalance that causes these residual vertigo?
JP: Once the meningioma is removed, the brain - if it was compressed by meningioma - comes to resume its place. Most of the time, there is a small space that is filled by the cerebro-spinal fluid. Thus, balance is restored inside the skull. In my opinion, it does not cause any symptoms.
Why do we keep fatigue for so many years?
JP: Having meningioma, being operated on, post-operative convalescence, possible neurological and cognitive losses, possible rehabilitation and any drug treatments (including anti-epileptic drugs) are all factors that weigh on brain functioning and explain the long way before a return to a life as normal as possible.
There are also unpleasant pain in the 2 scars that I have on the skull, loss of memory and balance.
JP: See my comments above.
Do neurological pain (hypersensitivity, feeling of teeth for example) ended, does the brain stop sending the pain message one day?
JP: As mentioned in my comments above, painful sensations fade over time, sometimes using treatments.
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?
JP: It is always difficult to give an opinion on a specific case without further details. If neuropathic pain persists more than two years after surgery, the probability that these pains "disappear" by themselves is weak. On the other hand, it is certainly possible to relieve them, all or part, using the various treatment of pain. As such, your doctor can guide you, if necessary, to a doctor specializing in pain.
Can we observe a personality change due to meningioma whatever its positioning or only in certain very specific locations?
I have just sought, and indeed: “frontal lobe - these are the high functions, memory, judgment. The tumors of the frontal lobe can cause changes in personality, speech difficulties.”
JP: We can observe changes in behavior (rather than a change in personality) during the occurrence of meningioma for several reasons such as brain compression, including frontal lobe, the psychological consequences linked to the announcement of such a diagnosis or even taking anti-epileptic drugs.
Meningiomas and Androcur-Progestatives
Statistically in the case of “Androcur” meningiomas, how much decrease in stopping treatment, and how much continue to grow?
After how long, do we know if it decreases or not?
JP: In my opinion, there is a decrease in the size of meningiomas after stopping the taking of progesterone drugs in more than 60% of cases. Some remain stable and do not decrease, in particular calcified meningiomas and osteomeningiomas.
We usually observe a decrease in MRI monitoring from the 6th month . It is sometimes more delayed if the decrease is slow.
Risks of recurrence after operations and full stopping hormones? Are there statistics?
JP: I am not aware of a statistical study on the risk of recidivism of meningioma after stopping taking medication derived from progesterone and after surgical treatment. Apart from the context of taking medication derived from progesterone, the risk of recurrence of grade 1 meningioma after surgical excision is less than 10%.
Do you notice an evolution in the number of cases of meningiomas throughout your years of practice?
JP: I am not a specialist in epidemiology. There is a moderate increase in the incidence of meningiomas when compared to the current period compared to previous decades. The main factors implicated are the increase in the age of the population (the frequency of meningiomas increasing with age), the more frequent realization of brain imaging and more advanced care for the elderly.
How many cases do you think you have in your service?
JP: I have very precise information for the Sainte-Anne hospital center. Nous avons mis en place en novembre 2018 un moyen facile d'accès à l'IRM pour les patientes ayant besoin d'un dépistage de méningiome dans un contexte de prise de médicaments dérivés de la progestérone : http://www.ghu-paris.fr/fr/2018/10/26/neuro-sainte-anne-assure-depistage-radiologique-patients-traites-androcur/.
Before October 2018, we identified 72 patients. From October 2018 to December 2019, I received 55 new patients. So that makes a total of more than 127 patients.
Do you have grade 2 or 3 meningiomas in those due to Androcur?
JP: From memory, I have at least a grade 2 meningioma in a context of chlormadinone acetate taking and a grade 3 meningiom in a context of cyproterone acetate taking.
How many cases of meningiomas may have due to drugs as a percentage of cases listed in your hospital?
JP: 37% before 2019. Less than 20% in 2019. The figures depend a lot on the type of meningioma which is sent to us. Since the implementation of our screening offer, I have been led to see many "small" meningiomas which obviously do not require no gesture of surgery.
What do you think of the analysis of the tumor to progesterone receptors?
JP: The presence of progesterone receptors in tumor cells of meningiomas is frequent, including outside the context of taking medication derived from progesterone. Thus, if their presence is an argument to attribute the growth of a meningioma to taking medication derived from progesterone, it is not a sufficient argument. In my opinion, it is the duration of exposure to drugs derived from progesterone and the chronology between the exposure and the revelation of meningiomas which are the strongest arguments.
Foreign research
Are research on this subject only in France or other countries already worked on these subjects?
JP: The links between the growth of meningiomas and the hormones is a long -standing subject and studied by many teams.
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?
JP: I am not aware of such a study.
Many thanks for this work that you do every day to accompany us in this stage of life.
JP: Thank you for your confidence.
The Sainte-Anne hospital site has a service dedicated to meningomes due to medicines. To have an appointment quickly, either of MRI or with a neurosurgeon (if you have already spent an MRI), you can send an email to a single email address: depistage@ghu-paris.fr
Find the other Amavea articles here
