Meningioma: Anyone else? I'm frightened

Posted by pixie49247 @pixie49247, May 12, 2023

I just found out I have a Meningioma tumor from a MRI I had for something else. Doctor said they are almost always benign and am going to get an appointment with a neurologist. Anyone else have one of these. I’m getting very frightened now.

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amazingsw | @amazingsw | Feb 28 10:09am

In reply to @jasonl1012 "It is definitely a punch to the gut when you hear you have a brain tumor...." + (show)

What other options were you provided besides surgery? If you don’t mind me asking where was your tumor located?

amazingsw | @amazingsw | Feb 28 10:10am

In reply to @joetex "Yes, it is very stressful. I was in the hospital for another condition and a neurologist..." + (show)

I have one posted by my left optic nerve as well, I am horrified of surgery but it sounds as if it’s the only option

joetex | @joetex | Feb 28 10:51am

In reply to @amazingsw "I have one posted by my left optic nerve as well, I am horrified of surgery..." + (show)

Sorry, I should have added my neurosurgeon did Gamma knife procedure since it was close to nerve and I have had no problems at all for past 1 1/2 years.

mkoch | @mkoch | Feb 28 1:38pm

In reply to @jasonl1012 "I was referred to the first neurosurgeon by my PCP. I did not like our interaction..." + (show)

Good advice from Jason. All of this is stressful and overwhelming but finding the right doctor is the most important thing even if it takes a longer time to establish, ultimately, the best way to proceed. (That would be active surveillance, radiation, surgery, or a combination of the former two.)

stinalynn22 | @stinalynn22 | Mar 7 4:18pm

In reply to @andreadiofaulks1969 "Well I had Radiation in October. Still adjusting to side effects of that. But I must..." + (show)

Hi Andrea
I know this post is a few months old but I wanted to reply to your inquiry about the Depo about because I haven't really seen that talked about too much here.
I was diagnosed in September of 2024 with a small convexity meningioma. I am on a watch and wait protocol.
I used Depo Provera for about 12 years for endometriosis and I believe that there is a strong possibility it caused my current brain tumor.
Did you use Depo? I'm 56 so I started using it way back in the 90s lol but they are still prescribing it and I have been trying to warn others to be cautious and to at least take breaks from using it. I was never told that it shouldn't be used for years at a time although I did take a few breaks.
I don't know if you are aware that there is pending litigation ( not sure if I'm allowed to mention this) to help women who have been diagnosed with a meningioma after using the birth control shot.
This is the scariest thing I have ever been through, I hope you are doing ok. Sending positive energy your way.

Colleen Young, Connect Director | @colleenyoung | Mar 9 6:28pm

In reply to @ljm1 "Thank you and I appreciate your comment. Wandering if I have to get a consult from..." + (show)

If Mayo Clinic in AZ, FL or MN is an option for you, here is how to request a second opinion: http://mayocl.in/1mtmR63

@ljm1, did you decide on getting a second opinion? Any update?

ljm1 | @ljm1 | Mar 9 7:42pm

In reply to @colleenyoung "If Mayo Clinic in AZ, FL or MN is an option for you, here is how..." + (show)

Thank you for asking. Even though it feels like a lifetime away, I have an appointment in April with a neurologist who specialize in the treatment of brain tumors. I am definitely interested in second and third opinions. Thank you for the info.

jasonl1012 | @jasonl1012 | Mar 11 12:06pm

In reply to @amazingsw "What other options were you provided besides surgery? If you don’t mind me asking where was..." + (show)

None. He said surgery now or wait until you get serious side effects of double vision or pituitary hormone issues like diabetes because it was already pressing on and displacing my optic nerve and pituitary gland. I told him I don’t have any side affects, and he said you will. It’s a matter of when.

radmom | @radmom | Mar 11 2:22pm

In reply to @mkoch "Thank you so much. I have 2 meningiomas that are being watched and was told I..." + (show)

I just keep my eyes closed the entire time and it doesn’t bother me. I am given earphones and listen to smooth jazz which relaxes me.

brandynecole | @brandynecole | Mar 17 2:24pm

I just had MRIs done and they found on at my T4. Both my parents had lung cancer, with tumors in that same spot. Everyone I speak to say it's benign, but everything I'm seeing about atypical meningioma is it is neither benign nor malignant, but it is an aggressive tumor. I understand your concerns and fears because this hurry up and wait and see approach is not in my wheelhouse. Both my parents had stage 4 lung cancer at detection, both had a tumor on the T4 vertebrae, both were in agony. I'm in so much pain every day it is a struggle not to take the self checkout, but I remember my son, my reason to keep going and fighting another day. I have Chiari Malformation and have had 2 craniotomies within the last 3.5 years. My life has gone from active and taking care of everyone else to now not even being able to do simple tasks by myself, my son is now the parent to me. My memory is crap, the pain is constant, my inability to be active and independent is all wearing on me. Please remain strong, remain positive (even though so difficult), and keep us updated. I'm glad to have found a forum that is legit to speak up in.