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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@babe69

I was diagnose with a Meningioma Brain Tumor & it’s scaring me to be honest. Lately I’ve been getting really bad headaches.

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Has your doctor discussed options? I have 2 friends who had this and both had surgery with full recoveries. I hope they can find some help for your headaches.

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@babe69

I was diagnose with a Meningioma Brain Tumor & it’s scaring me to be honest. Lately I’ve been getting really bad headaches.

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Welcome, @babe69. I moved your post about being recently diagnosed with a menigioma to this existing discussion:
- Meningioma: Anyone else? I'm frightened https://connect.mayoclinic.org/discussion/meningioma-9/

I did this so you can click the link and read the stories of others and connect with them easily. I also ask along with @celia16: Has your team talked about options with you and what to expect?

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@colleenyoung

Welcome, @babe69. I moved your post about being recently diagnosed with a menigioma to this existing discussion:
- Meningioma: Anyone else? I'm frightened https://connect.mayoclinic.org/discussion/meningioma-9/

I did this so you can click the link and read the stories of others and connect with them easily. I also ask along with @celia16: Has your team talked about options with you and what to expect?

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Thank u, I appreciate it I’m new & fighting everything out!

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@celia16

Has your doctor discussed options? I have 2 friends who had this and both had surgery with full recoveries. I hope they can find some help for your headaches.

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Annual monitoring through the end of this year than go after that go from there!

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@babe69

Annual monitoring through the end of this year than go after that go from there!

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First, hopefully you have consulted with a neurologist and not just your primary care physician. Secondly, did the physician who ordered the scan state that the headaches are most likely a symptom of the meningioma, or a separate issue, not related to the meningioma. I ask this because I was told that if a meningioma is causing symptoms (like a headache, vision changes, etc.) then you should be a little more aggressive figuring out what to do rather than just annual monitoring.

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Hi. I was diagnosed with a Meningioma about 3 years ago. (I found it that it found in 2006 but no one informed me about it. That’s another story). Anyway my Neurosurgeon watched it and decided to have it taken care of when it was 6cm. I had Gamma Knife done in March. I’m having my 6 month check up in September. Do your research and find a good qualified surgeon who works with Meningiomas. The procedure was tolerable. The hardest part was having a halo screwed into my head (they were relatively painless and I was anesthetized for this procedure) During the Gamma Ray I was coming out of my amnesia. It took all of 6 hours, and I went home the same day. Good luck.

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Hi ... I was also diagnosed with a meningioma 3-4 yrs ago. I have 2- 1 in frontal lobe and 1 in back. I've decided to go for a second opinion. Headaches are getting worse, and a few other symptoms are a little concerning. I live in Connecticut and will try someone in Hartford, anyone know of a neurosurgeon in my area?

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@rma83

Hi ... I was also diagnosed with a meningioma 3-4 yrs ago. I have 2- 1 in frontal lobe and 1 in back. I've decided to go for a second opinion. Headaches are getting worse, and a few other symptoms are a little concerning. I live in Connecticut and will try someone in Hartford, anyone know of a neurosurgeon in my area?

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Well, I notice it has been 2 days since you posted your query with no response. So I'll just put this suggestion out there. Yale University Hospital is only about a 45 minute drive from Hartford. I traveled twice that distance to consult with a neurosurgeon at a teaching hospital associated with the University of California. In my opinion, I think the doctors at a teaching hospital are more likely to stay up date on the latest research.

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While I don't live geographically near you ( a state of MD resident), I am a 10yr meningioma survivor-thriver and run a nonprofit that focuses on pre and post-operative support for meningioma survivors-thrivers.

As a newly diagnosed M patient below are a few MUST dos:
1) Know the type, grade, and location/area of your tumor. These factors determine the treatment plan needed.
2) Do your research so that you have a known understanding bout this very complex brain disease. There is limited empirical scientific research done on meningioma brain tumors. Your docs will use the term 'benign' to mainly indicate that meningioma brain tumors are non-cancerous.
3) Create a list of questions to ask of the healthcare team providing your services. If you receive replies that don't sit well with you or you need more detailed responses, ask for them!
4. Always have someone with you to provide support and take notes on what is being shared with you by the healthcare team. Being very informed will ultimately aid you in deciding on your care plan.
5. ALWAYS get more than one medical opinion before deciding on your treatment options.

Go well...

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@drjohevans

While I don't live geographically near you ( a state of MD resident), I am a 10yr meningioma survivor-thriver and run a nonprofit that focuses on pre and post-operative support for meningioma survivors-thrivers.

As a newly diagnosed M patient below are a few MUST dos:
1) Know the type, grade, and location/area of your tumor. These factors determine the treatment plan needed.
2) Do your research so that you have a known understanding bout this very complex brain disease. There is limited empirical scientific research done on meningioma brain tumors. Your docs will use the term 'benign' to mainly indicate that meningioma brain tumors are non-cancerous.
3) Create a list of questions to ask of the healthcare team providing your services. If you receive replies that don't sit well with you or you need more detailed responses, ask for them!
4. Always have someone with you to provide support and take notes on what is being shared with you by the healthcare team. Being very informed will ultimately aid you in deciding on your care plan.
5. ALWAYS get more than one medical opinion before deciding on your treatment options.

Go well...

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This is great advice!

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