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Left Tentorial meningioma: What should I expect?

Posted by jhbl @jhbl, Jan 13, 2022

I just learned that my meningioma is tentorial. I know that this is a rare type and that surgery is often more risky based on location. Mine is still small (8mm) which I assume is good to make sure of complete removal. I am seeing my neurosurgeon Friday but I like to hear what others have heard/gone through/etc It’s often more helpful!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 13, 2022

Hi @jhbl, allow me to introduce you to others who have experience with tentorial meningiomas, like @pleu @jamie9 @mrser52 @cnesselroad. They hopefully can share their knowledge and experiences with you.

In preparation for your upcoming meeting with the neurosurgeon, what questions have you prepared to ask him/her?

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pleu | @pleu | Jan 13, 2022

Are they taking yours out? I honestly know nothing. The Arkansas local neurosurgeon never even called me back after the second MRI.

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1 reply
jhbl | @jhbl | Jan 23, 2022

I saw my neurosurgeon. He showed me the MRI, the tumor is just millimetres away from the transverse sinus which makes the surgery even more risky. If it were to block the sinus as it grows, he would also need to reconstruct that vessel. So we talked about when to take it out. He wants to scan it again in 3-6 months and probably take it out then.

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1 reply
jhbl | @jhbl | Jan 23, 2022
In reply to @pleu "Are they taking yours out? I honestly know nothing. The Arkansas local neurosurgeon never even called..." + (show)
@pleu

Are they taking yours out? I honestly know nothing. The Arkansas local neurosurgeon never even called me back after the second MRI.

Jump to this post

Oh my gosh! I’d call and ask or find a 2nd opinion. That’s not fair to you!

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pleu | @pleu | Jan 24, 2022
In reply to @jhbl "I saw my neurosurgeon. He showed me the MRI, the tumor is just millimetres away from..." + (show)
@jhbl

I saw my neurosurgeon. He showed me the MRI, the tumor is just millimetres away from the transverse sinus which makes the surgery even more risky. If it were to block the sinus as it grows, he would also need to reconstruct that vessel. So we talked about when to take it out. He wants to scan it again in 3-6 months and probably take it out then.

Jump to this post

Oh my gosh. How are you holding up?

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pleu | @pleu | Feb 5, 2022

We are now leaving MN. Saw the neuro-oncologist and the neurosurgeon at Mayo. I will say, night and day care difference! All of my questions were answered. I feel very well informed. The tension headache I had in my forehead since my diagnosis went away hours after the first consult. I haven’t been free of that mild headache since august of last year!
We are on watch and wait. In the event anything ever happens, I now know it would be gamma knife. I also now know when that would occur and why. I was given a thorough work up to see if I was having any neurological issues, which I had never been given before.
On a 5 star scale, I would give them an 11.

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1 reply
susanaz | @susanaz | Feb 6, 2022

@pleu, so happy to hear this! I could hear your big sigh of relief! Wishing you all the best and peace of mind on your new watch and wait chapter, knowing you're in the best hands if or when you ever need them.

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purpleturtle | @purpleturtle | Feb 8, 2022
In reply to @pleu "We are now leaving MN. Saw the neuro-oncologist and the neurosurgeon at Mayo. I will say,..." + (show)
@pleu

We are now leaving MN. Saw the neuro-oncologist and the neurosurgeon at Mayo. I will say, night and day care difference! All of my questions were answered. I feel very well informed. The tension headache I had in my forehead since my diagnosis went away hours after the first consult. I haven’t been free of that mild headache since august of last year!
We are on watch and wait. In the event anything ever happens, I now know it would be gamma knife. I also now know when that would occur and why. I was given a thorough work up to see if I was having any neurological issues, which I had never been given before.
On a 5 star scale, I would give them an 11.

Jump to this post

I agree. I also had Gamma knife procedure done there after a very complete workup . Even after coming home the doctor kept in touch with me and had me send them my local follow-up MRI to review at no charge . They always sent them back
They told once a patient always a patient
I highly recommend them to those wanting a second opinion
I agree with your rating .

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pleu | @pleu | Feb 8, 2022

Great experience! Hope you are still doing very well. 🙂

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