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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I have a falx meningioma brain tumor, I was diagnosed last year. I was hoping that by the time I went for another MRI it would be gone.I guess I was hoping for a miracle. It's still there so that's what my MRI showed, so I see a neurosurgeon Thursday to find out what I need to know about having this.I have had a lot of issues since the discovery of it ,I have not had a seizures yet,that scares me, I take it day by day some days very few symptoms and other days to many,I believe my worse problem is forgetting simple things I can see it and but I just can't get the words out. I will say a prayer for you, If you just want to talk just reach out .

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@colleenyoung

@cscmaryann, I'm tagging @meningiomametwo to make sure they see your post and your questions.

@meningiomametwo, what are the next steps for you?
@cscmaryann, tough decisions. Are you leaning towards having the surgery?

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I'm still in holding pattern. I am trying to get an opinion from Mayo neurosurgeon(s), but not sure they are willing to get involved, as one has advised me to stick with my local surgeons (who seem to differ in opinions), since they know my case better. (one did the crainiotomy, the other removed the infected hardware from the crainiotomy). I'm sure all are trying to do their best, I'm just wanting to know the best avenue to take.

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@cscmaryann

I'm told my bone flap (from 2023 crainiotomy and subsequent removal of infected hardware and bone chip left after surgery] may still have bacteria in it and a "10-minute crainiotomy" could be done to determine if, in fact. there is infection still there. This 10-minute procedure would be enough to scrape some bone to do more testing on bone flap situation. What does your dr tell you about your "indolent bone infection?" I had 6 weeks of daily antibiotic infusions after removal of the infected hardware. My dr said I would probably need that again if I choose to have the "10 minute" procedure to get a new bone scraping. Have you been taking intravenous antibiotic treatment? I'm in a 6-month waiting mode to see what to do. Thank you.

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@cscmaryann, I'm tagging @meningiomametwo to make sure they see your post and your questions.

@meningiomametwo, what are the next steps for you?
@cscmaryann, tough decisions. Are you leaning towards having the surgery?

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@mkoch

For Kimd0529: I had a craniotomy to remove a meningioma a year ago. Yes, being diagnosed is a shock. The key is to find a surgeon and hospital you have absolute confidence and trust in. That makes accepting one's diagnosis and following through with any interventions easier. My tumor was in a tricky location to access, and only 1/16th of an inch from my optic nerve. All follow up MRIs have verified that it was totally resected. The location of your meningioma might be more easily accessible. And, the craniotomy was not the horrible experience I had imagined it to be. I've had 2 mastectomies and I will offer the craniotomy was no worse. Currently, I have 2 other meningiomas ( 6 mm. & 8 mm) that my surgeon has suggested we watch-and-wait. There are a lot of factors that go into a neurosurgeon's advice and I have learned to trust his expertise and not obsess about those meningiomas taking up space in my brain.

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How big was the one removed? My larger one is 9.9 mm and they said watch and wait 3 mos which isn't that reassuring. Did you have any symptoms / problems that warranted it to be removed?

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@geegeebabe

I was scared to death with my first one, so I know what you are feeling. The good thing is meningiomas are slow growing and benign. They are not a death sentence! I had one 20 years ago, had radiation done and it was gone. Just discovered a second one a few months ago. I have a new doctor, he wants to wait and see with this one.
Best things to do are to consult with the doctor, keep getting scans, and discuss treatment. Join a support group, especially one that meets live. The one I joined last time, really saw me through a lot. Yes, this is frightening, but you wil get through this.

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Thank you.

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@jeannedale

Yes, I have one. I was also told the same thing. It’s been 3 months since the discovery. I have another appointment with the Neurologist this week and probably will get a new CT Scan. FYI, I have no symptoms. Jeanne

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@jeannedale, welcome. How did your appointment with the neurologist go? Any update?

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@elisabeth007

after six years on wait and watch, my M has tripled in size in last 5 years and surgery is being planned. Last mri was 48 hours ago and i have pounding headache that hasn’t allievated

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Ice packs can be helpful. I have 6 in my freezer to rotate. Good luck and stay strong!

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I was scared to death with my first one, so I know what you are feeling. The good thing is meningiomas are slow growing and benign. They are not a death sentence! I had one 20 years ago, had radiation done and it was gone. Just discovered a second one a few months ago. I have a new doctor, he wants to wait and see with this one.
Best things to do are to consult with the doctor, keep getting scans, and discuss treatment. Join a support group, especially one that meets live. The one I joined last time, really saw me through a lot. Yes, this is frightening, but you wil get through this.

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@terid

Hi, I just found out I have a timy Meningioma tumor from a MRI also and my Doctor said they are almost always benign. I too, am going to get an apointmetnt with a neurologist. My Doctor also said they may just wait and see what happens. Best of wishes!

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Hi. I was diagnosed with one in 2003. Doctor didn’t think I’d make it through surgery, so he used radiation to eliminate it. All has been well until this year, when we found a second one growing. My new doctor had taken a wait and see attitude. Not happy about it since it is so close to a major blood vessel, but my PCP says this doctor is one of the best, so I am taking his word on this
. Don’t be scared. They are benign and slow growing. Make sure you get regular scans and work with your doctor. Join a support group, they will help see you through this!

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@joumana

I do have it .. and also discovered accidentally..
I hear too much noises and feel pressure in my skull and ears .. can't sleep and can't listen to anything.
I must have my surgery in 3 weeks ... and I am worrying a lot.

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Hi @joumana, as you prepare for surgery, you might appreciate the tips and experiences shared in these related discussions:

- How did you prepare mentally for Meningioma surgery?
https://connect.mayoclinic.org/discussion/meningioma-surgery/
- Newly Diagnosed With Meningioma: What can I expect with surgery?
https://connect.mayoclinic.org/discussion/newly-diagnosed-with-meningioma/

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