Hello to all!
Since long time I don’t post anything but gladly I’m still here
There are some developments so I’ll try to summarize:
Approximately 3 yrs ago after having very strange feelings I discovered I have an AVM of 6cm diameter located in the right frontal lobe (and so I found that the strange feelings were epileptic seizures). I started being medicated with kepra 500mgs per day. I still had seizures approximately 1 time per month so the Dr increased the dosage to 750mgs/day. After this I couldn’t properly sleep and I lost a few kilos due to lack of appetite, so we returned to the initial dosage. Additionally I had an aneurysm in the posterior cerebral artery and the question was, should we coil the aneurysm and leave the AVM untouched or remove it and at the same time treat the aneurysm. After discussing my exams with several Drs around the world it was decided not to touch the AVM (it’s classified as level 4, it’s has a deep venous component and high flux) because according to them the probability of success was bellow 50%. While coilling the aneurysm there was a dissociation of an artery which provoked a minor stroke, without any physical or mental damage (this happened two weeks before I defended my PhD so I was in the hospital studying for the defense…). Since my Dr always told me the only thing I could do to decrease the probability of rupture was to quit smoking, I did a huge effort and I quit (since 4,5 months I don’t smoke, after 17 yrs of smoking one package per day). Anyway, everything was good, until two days ago. I’m at Greece (my boyfriend is Greek and we always come here for vacations) and I started feeling bit strange. The symptoms were feeling weak, very mild headache and heavy head, like the intracranial pressure was too high. It was nothing serious but since these symptoms were similar to what I felt when having the stroke I decided to go to the hospital and I’m still here because my AVM bled. It was a very minor bleeding that doesn’t come from a ruptured aneurysm but from a very small vein in the AVM. Again, being unlucky I’m very lucky because there are absolutely no mental or physical damage. Now my questions… My Dr back in Portugal always told me not to stress and to try to live a normal life without being afraid so that this doesn’t stress me increasing the probability of severe rupture. Since now maybe the panorama changed and I cannot reach him, I’m very confused because these Drs here tell me to completely change my life. Their advice is: you cannot work a lot (being a scientist I really need to work a lot), cannot go to the sun (like the beach), cannot do physical exercise (not even to go up a mountain, for example, or dance for some hours as I did all my life), cannot drink one drop of alcohol (I never drunk a lot but the fact that they are forbidding me this really stresses me out) and avoid flying as much as I can (being a scientist I always need to travel to conferences and having a foreigner boyfriend demands me to flight some times per year). This means a complete change of my life. They tell me that all of these things increase the probability of having a seizure that increases the probability of bleeding (which my Dr never ever mentioned). Now they changed my medication to epanutin saying to leave kepra out because the 500mgs are non therapeutic (like for 2 yrs I’m taking pills that don’t do absolutely anything to me? Why would my Dr prescribe this if it was not doing anything?). So, you understand my concerns… Since I cannot reach my Dr and until the end of the month I’m stuck here it would be nice to have the opinion and experiences of you guys so that you can help me out to better understand these discrepancies. I’m really feeling that if it is to live such a constrained life as this, better not to live at all. I fought for so many yrs to be an astronomer, with these measures they are taking even this away from me, not to talk about a simple day at the beach or a simple hike in the mountain… Another thing that made me very confused was that they told me that if it has to happen it happens, no matter what I do (basically that there is a probability of rupture that is now slightly increased after the 1st rupture, and even if I take all the precautions it might happen, or not). So why to live such a constrained unhappy life just to finish having a rupture anyway…? Actually when I had this rupture I was not working, not in the sun, I slept and ate well so… nothing associated with these risk factors they mentioned.
Well… As you can imagine I’m feeling very sad after all of this and if you could please share your stories with me maybe it might help me to decide better how to live from now on (because so many different opinions and so different and sometimes opposite information given by different Drs is really making me stressed and confused).
Thank you so much for your time and attention.
All the best,