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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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kelcor1025 | @kelcor1025 | Aug 1 10:13am
In reply to @drjohevans "While I don't live geographically near you ( a state of MD resident), I am a..." + (show)
@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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Our daughter has an appt next week at Mayo re a meningioma. What type of questions should we ask?

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1 reply
mkoch | @mkoch | Aug 2 9:08pm
In reply to @kelcor1025 "Our daughter has an appt next week at Mayo re a meningioma. What type of questions..." + (show)
@kelcor1025

Our daughter has an appt next week at Mayo re a meningioma. What type of questions should we ask?

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In some respects, I think the questions to be asked would be based on whatever information you already have from the scan that ascertained that she has a meningioma. For example, if you were told that the meningioma is more than 3 centimeters it is unlikely that she would be a candidate for radiation. Then, my first question would be how easily accessible is the location for surgical removal. You could also ask if it would be reasonable to take a watch-and-wait approach and have a repeat scan in 6 months. That is what I did. I needed the time to educate myself and get used to the whole idea of having a craniotomy. Given that you are going to the Mayo Clinic, you are in good hands and the doctors there will guide you along the way. For what it's worth, I'll offer one bit of advice I was told by my neurosurgeon at U.C.S.F., and that would be, if the patient is healthy, and the meningioma is in a location that is operable, surgical resection is always the first choice.

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2 replies
qiqi | @qiqi | Aug 4 4:24pm
In reply to @mkoch "In some respects, I think the questions to be asked would be based on whatever information..." + (show)
@mkoch

In some respects, I think the questions to be asked would be based on whatever information you already have from the scan that ascertained that she has a meningioma. For example, if you were told that the meningioma is more than 3 centimeters it is unlikely that she would be a candidate for radiation. Then, my first question would be how easily accessible is the location for surgical removal. You could also ask if it would be reasonable to take a watch-and-wait approach and have a repeat scan in 6 months. That is what I did. I needed the time to educate myself and get used to the whole idea of having a craniotomy. Given that you are going to the Mayo Clinic, you are in good hands and the doctors there will guide you along the way. For what it's worth, I'll offer one bit of advice I was told by my neurosurgeon at U.C.S.F., and that would be, if the patient is healthy, and the meningioma is in a location that is operable, surgical resection is always the first choice.

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May I know the name of your neurosurgeon at UCSF? Thanks.

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1 reply
kelcor1025 | @kelcor1025 | Aug 4 8:14pm
In reply to @mkoch "In some respects, I think the questions to be asked would be based on whatever information..." + (show)
@mkoch

In some respects, I think the questions to be asked would be based on whatever information you already have from the scan that ascertained that she has a meningioma. For example, if you were told that the meningioma is more than 3 centimeters it is unlikely that she would be a candidate for radiation. Then, my first question would be how easily accessible is the location for surgical removal. You could also ask if it would be reasonable to take a watch-and-wait approach and have a repeat scan in 6 months. That is what I did. I needed the time to educate myself and get used to the whole idea of having a craniotomy. Given that you are going to the Mayo Clinic, you are in good hands and the doctors there will guide you along the way. For what it's worth, I'll offer one bit of advice I was told by my neurosurgeon at U.C.S.F., and that would be, if the patient is healthy, and the meningioma is in a location that is operable, surgical resection is always the first choice.

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Many thanks for your response, suggestions and information.
Have you had any treatment yet, and, if so, what kind, or are you still deciding?

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1 reply
mkoch | @mkoch | Aug 6 9:03pm
In reply to @kelcor1025 "Many thanks for your response, suggestions and information. Have you had any treatment yet, and, if..." + (show)
@kelcor1025

Many thanks for your response, suggestions and information.
Have you had any treatment yet, and, if so, what kind, or are you still deciding?

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(Kelcor1025) Hi there. Yes, I had a craniotomy last October. I have posted before that a local neurologist and a radiation oncologist (who manages cyberknife in Silicon Valley) both told me that given the location of my meningioma (1/16th of an inch from my optic nerve) no surgeon would feel comfortable removing it and I should have radiation. My daughter insisted I get yet another opinion at UCSF with Dr. Philip Theodosopoulos. I actually told him that two other neurologists had told me that no surgeon would feel comfortable operating and his response was, basically, no worries, "I do one or two a week." I will add that I had a mastectomy 5 years ago and, in a lot of respects, the craniotomy was an easier surgery.

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mkoch | @mkoch | Aug 6 9:06pm
In reply to @qiqi "May I know the name of your neurosurgeon at UCSF? Thanks." + (show)
@qiqi

May I know the name of your neurosurgeon at UCSF? Thanks.

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Dr. Philip Theodosopoulos. My local neurologist was impressed when he read the forwarded surgery report from UCSF. He didn't think the surgery could be done.

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1 reply
qiqi | @qiqi | Aug 7 12:04am
In reply to @mkoch "Dr. Philip Theodosopoulos. My local neurologist was impressed when he read the forwarded surgery report from..." + (show)
@mkoch

Dr. Philip Theodosopoulos. My local neurologist was impressed when he read the forwarded surgery report from UCSF. He didn't think the surgery could be done.

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I sincerely appreciate your reply. The MRI found that I may have a plaque-like meningioma on July 29 in Mayo Clinic AZ. I am waiting for a 3-month MRI follow up. UCSF is No 2 in the nation for neurosurgery. I am considering to get the second opinion. You are very lucky to have such a good daughter.

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citychica | @citychica | Aug 19 11:44am
In reply to @jasonl1012 "So is it by the pituitary gland? And pressing up on the optic nerve? That’s where..." + (show)
@jasonl1012

So is it by the pituitary gland? And pressing up on the optic nerve? That’s where mine is and I’ve had two opinions so far and going to Mayo in 10 days. I can let you know what they say, but so far all have said remove it. At 3 cm I’m surprised they wouldn’t. Definitely get another opinion at Mayo. It’s your health and you deserve it

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Any news on your surgery?

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1 reply
jasonl1012 | @jasonl1012 | Aug 20 12:59pm
In reply to @citychica "Any news on your surgery?" + (show)
@citychica

Any news on your surgery?

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This Friday, August 23. I’m pretty nervous.

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1 reply
cscmaryann | @cscmaryann | Aug 20 3:31pm

I just prayed for you. There is no point in being nervous if you are going ahead with the surgery. May you trust in your surgeon and, more importantly, your God.

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