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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@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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Elisabeth, I am sorry to hear that you are no longer in the watch-and-wait category and are now scheduled for surgery. But, as I've stated before on this forum, the surgery to remove my meningioma was not the horrible thing I imagined. And, I felt fine pretty much as soon as I arrived back home 2 days later. I know from your prior posts that you, like me, are very particular and selective about your healthcare providers and I'm sure you're in good hands. That's the crux of the matter, an experienced doctor we have trust in and a good hospital.

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@darla01

Thank you so much for posting this.
My mother was recently diagnosed with possible Meningioma. She was having debilitating headaches for several days and tried to drive herself to the ER. She couldn't. That was almost a month ago, and still no relief. It is taking so long to get anything done. She just had MRI yesterday. We went back to to her oncologist at Shands here in Gainesville, FL. I am seriously considering taking her to Mayo Clinic in Jacksonville, because her next appointment is not until 11/19/24. Oncologist prescribed Hydrocondone it did not work. She then broke out with Shingles on her scalp so they tried Gabapentin, that didn't work either. Has anyone found any relief for the headaches ? What did you do?

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@darla01, if you would like to contact Mayo Clinic, start here http://mayocl.in/1mtmR63

How is your mom doing?

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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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@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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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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@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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@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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@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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@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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@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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