Should I choose to do surgery right away or wait a while?

Posted by gdcdf03 @gdcdf03, Sep 28, 2023

I was diagnosed with having meningioma measuring 2.9cm in the left posterior fossa. There is focal mass effect on left pons with suggestion of impingement of the cisternal segment of the left trigeminal nerve which causes jolting pain in my jaw. I have other symptoms such as vertigo and tinnitus. Surgery was suggested but I am 52 yo and scared to go thru brain surgery. Nerve blocker can manage my pain but I dont want to take it long term. Has anyone went thru similar surgery and can tell me what it’s like? Should I opt to do surgery or no?

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@cscmaryann

So interesting about the "upcoming biological agents" you mention. When I looked this idea up on the internet, it spoke of this treatment as if only for cancerous tumors, so I am very curious. I am meeting with a neurosurgeon tomorrow and will definitely ask about this new area. Thank you for enlightening me!

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I wish I could pull up that medical pub reference in time. Gonna try but it is doubtful. It was a 3 person, 1 location cohort. I do so much medical reading I can't recall which source. But I'll try to locate it. Even if it's later in the week.

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@holly56

I live 30 minutes from Duke so if you need to travel or anything, let me know and I can help while you are here. You can email me at hollyj1962@yahoo.com.
Sending hugs and blessings,
Holly Richard

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Hi. You are SOOOO kind. But you could contact me directly without posting your email address openly. I don't feel you have a big risk here but it's just good self protection. I'm going to DM you privately back.

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@rsfcowgirl

I'm so happy for your experience and outcome. Keep on the mend. I just learned yesterday about upcoming biological agents specific for benign meningiomas. It's a long way off yet but three patients have been treated this experimental way and all went well. This is a one location, very limited experiment. But it's promising bc they found a specific chromosome abnormality in the meningioma solid tumor they are trying to address as a treatment.
Until then, most of us can be thankful the meningiomas are not cancerous and get our best currently available treatments.
I'm so happy for you!

Jump to this post

So interesting about the "upcoming biological agents" you mention. When I looked this idea up on the internet, it spoke of this treatment as if only for cancerous tumors, so I am very curious. I am meeting with a neurosurgeon tomorrow and will definitely ask about this new area. Thank you for enlightening me!

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@rsfcowgirl

Hi. I in fact did have two consultaions with 2 specialists at Duke when I was pursuing additional opinions. They're in my reachable range by car. They're highly reputable and have sincerity and empathy within them, from my experience. I also recommended them on the short list of medical care for serious diagnoses.
Thanks for the input.

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I live 30 minutes from Duke so if you need to travel or anything, let me know and I can help while you are here. You can email me at hollyj1962@yahoo.com.
Sending hugs and blessings,
Holly Richard

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@holly56

Hi there,
Sounds like you are doing great at weighing in all options. Getting other opinions from hospitals specializing in brain tumors is critical. The Preston Robert Tisch Brain Tumor Center at Duke hospital in Durham NC has several clinical trials and many brain tumor experts that could also collaborate with your docs too to see if they have additional information to share or may know of other BT institutions that may. Sending good thoughts and prayers 🙏🏻🙏🏻

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Hi. I in fact did have two consultaions with 2 specialists at Duke when I was pursuing additional opinions. They're in my reachable range by car. They're highly reputable and have sincerity and empathy within them, from my experience. I also recommended them on the short list of medical care for serious diagnoses.
Thanks for the input.

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@rsfcowgirl

I'm so happy for your experience and outcome. Keep on the mend. I just learned yesterday about upcoming biological agents specific for benign meningiomas. It's a long way off yet but three patients have been treated this experimental way and all went well. This is a one location, very limited experiment. But it's promising bc they found a specific chromosome abnormality in the meningioma solid tumor they are trying to address as a treatment.
Until then, most of us can be thankful the meningiomas are not cancerous and get our best currently available treatments.
I'm so happy for you!

Jump to this post

Hi there,
Sounds like you are doing great at weighing in all options. Getting other opinions from hospitals specializing in brain tumors is critical. The Preston Robert Tisch Brain Tumor Center at Duke hospital in Durham NC has several clinical trials and many brain tumor experts that could also collaborate with your docs too to see if they have additional information to share or may know of other BT institutions that may. Sending good thoughts and prayers 🙏🏻🙏🏻

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@cscmaryann

I've had one 3cm meningioma removed via surgery 7 weeks ago. In hospital and out in 3 days with no pain except very low-grade headaches for about two days two or three weeks afterwards. I'm still watching the healing process, as a part of the incision "weeps" a bit.
I have a second meningioma which my surgeon said we could watch for about three months, which is what I am doing while I am getting advice from Mayo (I hope) and another brain/spine surgeon in our area.
I think doing as much research as you can is very helpful. I am learning so much from reading other's experiences and by finding internet sites that list institutions that specialize in brain tumors.
Each person's situation is unique, so it really is helpful to get more opinions/information from as many resources as possible.
Thank you, Mayo, for this forum!

Jump to this post

I'm so happy for your experience and outcome. Keep on the mend. I just learned yesterday about upcoming biological agents specific for benign meningiomas. It's a long way off yet but three patients have been treated this experimental way and all went well. This is a one location, very limited experiment. But it's promising bc they found a specific chromosome abnormality in the meningioma solid tumor they are trying to address as a treatment.
Until then, most of us can be thankful the meningiomas are not cancerous and get our best currently available treatments.
I'm so happy for you!

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I've had one 3cm meningioma removed via surgery 7 weeks ago. In hospital and out in 3 days with no pain except very low-grade headaches for about two days two or three weeks afterwards. I'm still watching the healing process, as a part of the incision "weeps" a bit.
I have a second meningioma which my surgeon said we could watch for about three months, which is what I am doing while I am getting advice from Mayo (I hope) and another brain/spine surgeon in our area.
I think doing as much research as you can is very helpful. I am learning so much from reading other's experiences and by finding internet sites that list institutions that specialize in brain tumors.
Each person's situation is unique, so it really is helpful to get more opinions/information from as many resources as possible.
Thank you, Mayo, for this forum!

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@birdie1234

No serious pain meds......just Advil. I may have to in the future but so far ....so good. The pain comes and goes and hasn't been earth shattering as yet......and I'm hoping it won't be. My Mother had Trigeminal Neuralgia...(Tic-dela-ru) in the 70's and had hers operated on ( in Rochester N.Y. ) and never had another problem with it.

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OOPS.....I forgot to mention I take Gabapentin also........

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May I ask if all of you have had the surgeries done in your respective cities or at Mayo?? If Mayo which one and which Dr.?

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