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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@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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@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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@mkoch

Please do not go down that road second guessing an informed decision you made in concert with respected neuro doctors. It doesn't serve any purpose except to cause one stress. Just continue to focus on your recovery and the next steps in your treatment. And it could very well be it was the best decision to move ahead with surgery. I had a radiation oncologist tell me these usually slow-growing meningiomas can "turn" and suddenly become aggressive. Then, if you chose the watch-and-wait protocol, a lot could happen before the next annual MRI check up. You could have ended up in a worse situation with regard to the meningioma wrapped around/invading other sensitive structures.

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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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@kimd0529

I was just diagnosed as well last week and going for my first visit with a neurologist. I am scared out of my mind!

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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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@citychica

News update! Dr here in California said my tumor is very reachable via an endoscopic procedure and can remove some and biopsy to see if it’s contributing to my immune response in my eyes. Seeing the rest of the team today to discuss.

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Great news!

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Anyone else have feeling of denial for a little bit when 1st diagnosed then a week later it is hitting me like a brick. I know they say they are most likely non-cancerous, but the term "brain tumor" is frightening! I have my 1st appt. with neurologist tomorrow.

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@buddy52

I have just been diagnosed as well. I have same response, very frightened. Have been told by primary dr that meningiomas are usually benign, and I am thankful for that, but there are no guarantees. I am attempting now to see neurologist at UCSF, asap.

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I was just diagnosed as well last week and going for my first visit with a neurologist. I am scared out of my mind!

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News update! Dr here in California said my tumor is very reachable via an endoscopic procedure and can remove some and biopsy to see if it’s contributing to my immune response in my eyes. Seeing the rest of the team today to discuss.

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I have just been diagnosed as well. I have same response, very frightened. Have been told by primary dr that meningiomas are usually benign, and I am thankful for that, but there are no guarantees. I am attempting now to see neurologist at UCSF, asap.

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@meningiomametwo

I have the same as you only on the left side. Diagnosed n 2006, surgery 2017, hardwear removal 2020 (I was told they removed all of it)
2023, surgery to biopsy the bone flap, 2024, found out they didn’t remove all of the hardware. I have an indolent bone infection from my craniotomy in 2017. Waiting for the next part of my long journey.

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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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