Does anyone know how en plaque tentorial meningioma would be treated?

Posted by pleu @pleu, Dec 28, 2021

I can’t find ANY information on this and I honestly think the NS in Arkansas doesn’t even know. How are en plaque tentorial meningiomas treated if/when they have to be? I know it’s extremely rare, but since they have a name, there is probably a treatment protocol.

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Hi @pleu, welcome. Tentorial meningiomas are rare tumors located along the surface of the tentorium cerebella in the brain. Surgery may not always be an option. In some cases, radiosurgery or gamma knife radiosurgery is an option.

It sounds like your meningioma has an additional complication of “en plague”. This is a sub-type that involved a carpet or sheet-like lesion that infiltrates the dura (thick membrane that surrounds the brain and spinal cord) and sometimes invades the bone.

Pleu, were you recently diagnosed with meningioma? Have you discussed treatment options with a neurosurgeon?

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You have actually explained more about it than she did. She basically told me after the first MRI that I wasn’t interesting enough for her. She has never called after the second. She is the only one in the area that does meningioma surgery.
I have filled out a lot of paperwork for a consult with Mayo, but have never heard back, I’m not sure what I am doing wrong.
I do know I don’t want the one here.

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(As in the neurosurgeon at UAMS at Little Rock, AR)

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@pleu

You have actually explained more about it than she did. She basically told me after the first MRI that I wasn’t interesting enough for her. She has never called after the second. She is the only one in the area that does meningioma surgery.
I have filled out a lot of paperwork for a consult with Mayo, but have never heard back, I’m not sure what I am doing wrong.
I do know I don’t want the one here.

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Pleu, You may wish to follow up with Mayo Clinic by calling them. Mayo Clinic has a special 48-hour access program for brain tumors. Experts at the Mayo Clinic can help navigate your healthcare journey, answer your questions and guide you through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours. Be sure to mention the Brain Tumor 48-hour Access program.

Here are the numbers for all 3 Mayo Clinic locations: http://mayocl.in/1mtmR63

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@colleenyoung

Pleu, You may wish to follow up with Mayo Clinic by calling them. Mayo Clinic has a special 48-hour access program for brain tumors. Experts at the Mayo Clinic can help navigate your healthcare journey, answer your questions and guide you through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours. Be sure to mention the Brain Tumor 48-hour Access program.

Here are the numbers for all 3 Mayo Clinic locations: http://mayocl.in/1mtmR63

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Thank you.

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@pleu

Thank you.

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Pleu, any updates?

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Yes. Appointments are scheduled for beginning of February. Your help was invaluable.

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@pleu

Yes. Appointments are scheduled for beginning of February. Your help was invaluable.

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So good to hear. Which location are you going to? Are you preparing questions for your appointment?

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@colleenyoung

So good to hear. Which location are you going to? Are you preparing questions for your appointment?

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Rochester.
I have questions, but not a lot. Any additional questions would be from what they tell me at the visits. I just don’t have a lot of information to question.

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@pleu

Rochester.
I have questions, but not a lot. Any additional questions would be from what they tell me at the visits. I just don’t have a lot of information to question.

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Pleu, while not specifically a question, I always make sure to clear on what the next step is before leaving an appointment. I also use the "talk back" method to make sure I have understood something that I'm not sure of. This means repeating back in my own words what I think the doctor has said. This gives the doctor the opportunity to see if s/he didn't explain something thoroughly or if there is a gap in my understanding.

You might find these tips from fellow members helpful:
– Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

I'll be interested in hearing what you learn.

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Pleu, that is awesome! It must be a relief to know you're taking a step forward. I'm not sure if a patient portal is set up after an initial consult, but if you become a Mayo patient after the consult, the portal will have all appointment notes, test results, etc. I found it very helpful to know I didn't need to remember everything that was shared in the meeting because I could refer back to the records any time. Wishing you the best!

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@susanaz

Pleu, that is awesome! It must be a relief to know you're taking a step forward. I'm not sure if a patient portal is set up after an initial consult, but if you become a Mayo patient after the consult, the portal will have all appointment notes, test results, etc. I found it very helpful to know I didn't need to remember everything that was shared in the meeting because I could refer back to the records any time. Wishing you the best!

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Good tip, Susan. @pleu, you can find out more about Mayo's online patient portal here: https://onlineservices.mayoclinic.org/content/staticpatient/showpage/patientonline

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