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Meningioma and Cavernoma: Stressed Waiting and Watching
Brain Tumor | Last Active: Mar 11, 2018 | Replies (11)Comment receiving replies
Hey, y'all!! Had second opinion and this time talked to neurosurgeon instead of PA and he was very calming and matter of fact which I needed. Pretty much was..." this is it.... no big deal... small... keep watch on growth. it's calcified so.... The cavernoma? Probably there since birth. Again. A thing. No big deal." I'm better as days go on of just knowing these things are in my head and there's not a dang thing I can do about it. I, of course, go down the road and think that if I ever need surgery I'll go to No. 1. Mayo Clinic in Rochester. But... how does that bode for follow-up or if I have problem when I get back to FL? I know there are different opinions among the best of them... I guess no way to know for sure.
Replies to "Hey, y'all!! Had second opinion and this time talked to neurosurgeon instead of PA and he..."
I can't thank you enough for this forum. I'm anonymous. Family doesn't know when I freak. A calming oasis...this is. Anyway....no...no one yet (a PA, a neurosurgeon (NS?), my GP) says there's any connection between meningioma and cavernomas. Both are just "there." NS did take me off progesterone and DHEA because of a possible link between hormones and the head things. I brought that up though. They didn't. As I said before, I read everything I can. I read where you should stay away from blood-thinning meds (because of cavernoma) and docs said stay on 81mg aspirin that I take as just a precaution (had a misdiagnosed/fake heart scare one time)....but stronger blood-thinners could be a problem. GP gave me site to go to instead of floating all over the internet. Wish the NS's had done this. Here you go!! http://Www.medlineplus.gov. Also said true Mayo site and Johns Hopkins site is good. Go, Mayo!!! 🙂
I also say - Go, @ees1, go! 🙂 Good for you for doing your research and bringing relevant questions to your health care team. It is so important to advocate for yourself as you have done. It is often the patient who connects the dots and brings up things possible relevant connections, like hormone therapy and blood thinners in your case. Nicely done.
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Hi @ees1, so good to hear from and thanks for the update. One can hear the calm through your message. Knowledge and how it is delivered makes a difference. I'd like to hear from others about their experience with follow-up. From what I understand, if you are treated at Mayo, your team will coordinate follow-up with your local professionals.
I'm curious, did you find out about a possible relationship between meningiomas and cavernomas?