Meningioma and Cavernoma: Stressed Waiting and Watching

Hi @ees1 and welcome to Connect.
We have several members talking about meningiomas and cavernoma. I'm not aware of anyone in the Connect community having both, but they may have. Let me introduce you to a few ongoing discussions and members. You may be interested in joining these discussions to start:

- Cavernoma https://connect.mayoclinic.org/discussion/cavernoma/
- multiple meningioma brain tumors https://connect.mayoclinic.org/discussion/brain-tumors/

I'd also like to introduce you to @pegorr @eleanor1931seminara1931 @barbarabx @guzzie @caira and @jc2buds.

EES1, I can imaging that this is quite the shock. Watching and waiting is so difficult, but don't forget that this doesn't mean "do nothing". In fact, I prefer the term active surveillance, which means you are being monitored closely. This is active. Are you considering a second opinion? What are your next steps?

Hi, Just reading over my last MRI, this is what is says: Stable recurrent/residual meni involving the right greater sphenoid wing, ,etc. displacement of the optic nerve & extraocular muscles medially within the right orbital apex. Stable 8 mm meni. within the right aspect of the foramen magnum. possible stable small 3rd meningioma over the medial Left greater sphenoid wing over the roof of the posterior left orbital apex. & stable probably low flow vascular malformation involving left temporal lobe, likely a cavernous hemangioma, so I guess I most likely have both, but my neuro does not seem too concerned, and I will follow up with an October/Nov. MRI and then most likely surgery and/or radiation. It sorts seems like their may be a relationship between the two, but I'm not sure, and as I've discovered being a brain tumor patient, we are the last to know. Still it's a wonderful life:-) peg

Thank you. Still can think of nothing else. I feel immobile and helpless. I'm normally the one that fixes everything. Now I can't even fix me. Anyway. Waaah. Waah. :). No second opinion yet since I've yet to hear back from first dr.'s ofc about the cavernoma I saw listed on MRI report. They didn't mention it at my first appt. I'll keep y'all posted. Thanks again. Means so much!

Hi, went in for my MRI chat with neuro doc. and not a thing was said about the cavernous thing mentioned on the last report. Go figure. It either disappeared or was not critical enough to talk about. My doc wants to watch and wait for another year, but If I want to I have the option of surgery now, I just have to be ready for the results as well. As we know there is always a chance for deficits when working in the brain. I'm pretty sure I need ALL my wits about me so will wait for the year and enjoy my present quality of life. It is really a wonderful life and I hope you're being well taken care of. It's your turn. hugs, peg

Hi Peg,
The largest of my sister's tumors is 19.8 mm behind her right ear. The other 2 are smaller. One is right near left optic nerve. Her tumor that was surgically removed in 2001 was 5 cm. Her neurosurgeon here in Atlanta thought she should surgically remove the one behind her right ear as it was easier to get to. However, the Docs at Mayo felt Gamma Knife on all 3 was the best treatment option right now. Hope this helps!
All my Best,
Nancy

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.

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?

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.

--curtsying-- Thanks!!