Live with a meningioma
Answers from Pr Franck Emmanuel Roux
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: Keep 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 unpaid because "asymptomatic" is: fatigue, dizziness (finished since the stop of the Androcur and a small decrease in large meningioma size on 5- and above all a decrease in brain edema)
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.
Does edema that develop around meningioma regresses at the same time as meningioma? What is the impact of edema?
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?
Furthermore, is the progesterone that we naturally produce influence the evolution of meningioma?
A thousand thanks for this work that you do every day to accompany us in this stage of life.
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.
Pain - Scars - 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.
In the brain, where the tumor was, is it water that stays instead? Does this lead to an imbalance that causes these residual vertigo? Last question: why do we keep fatigue for so many years?
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
Suffering from neuropathic pain following a paresthesias 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?
Can we observe a personality change due to meningioma regardless of 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.”
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
Statistically in the case of “Androcur” meningomes, how much decrease the treatment of treatment, and how many continue to grow?
After how long do you know if it decreases or not?
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.
How many cases do you think you have in your service? Do you have grade 2 or 3 meningiomas in those due to Androcur?
How many cases of meningiomas may have due to drugs as a percentage of cases listed in your hospital?
What do you think of the analysis of the tumor to progesterone receptors?
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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