1. < Brain Tumor

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 | @cscmaryann | Oct 3, 2023
In reply to @rsfcowgirl "I'm so happy for your experience and outcome. Keep on the mend. I just learned yesterday..." + (show)
@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!

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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 | @rsfcowgirl | Oct 4, 2023
In reply to @holly56 "I live 30 minutes from Duke so if you need to travel or anything, let me..." + (show)
@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 | @rsfcowgirl | Oct 4, 2023
In reply to @cscmaryann "So interesting about the "upcoming biological agents" you mention. When I looked this idea up on..." + (show)
@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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cscmaryann | @cscmaryann | Oct 5, 2023
In reply to @rsfcowgirl "I wish I could pull up that medical pub reference in time. Gonna try but it..." + (show)
@rsfcowgirl

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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Thank you!

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rsfcowgirl | @rsfcowgirl | Oct 5, 2023
In reply to @cscmaryann "Thank you!" + (show)
@cscmaryann

Thank you!

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The study I reviewed individually and referred to here was the hydroxyurea study.

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djw | @djw | Oct 19, 2023
In reply to @djw "My wife had brain surgery to remove a tumor of similar size on July 6. The..." + (show)
@djw

My wife had brain surgery to remove a tumor of similar size on July 6. The surgery went well and the surgeon said he got all of the tumor he could. Her recovery from the surgery was remarkable as it was on July 6 and she left the hospital on July 8 after on two nights there. Her recovery at home was uneventful and she had little pain which was managed by meds for a week or so before she was off those and onto over the counter pain meds. The surgery itself was not extremely difficult for her. The diagnosis of the type of tumor is the most important point in my estimation, as that dictates the follow up care. The direction of the surgeon as far as what they feel they can remove and what side effects are the important factors in the decision. In my wife's case, there were no real side affects from the surgery itself. If you are not confident with what the surgeon is telling you get a second opinion before proceeding. Wishing you success and may God bless you.

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Today we had the follow up visit for my wife's MRI after six weeks of chemo and radiation for glioblastoma on her brain. The oncologist said the MRI showed no obvious tumor progression. This is amazing news! She will have MRI's every two months for one year. During that time she will be on a schedule of chemo, temodar, for five days on and 25 days off. She is still feeling ok and has been able to stabilize weight loss, sleep better and feel ok since she has been off chemo and radiation for four weeks. Feedback from any others who have had a similar experience is appreciated.

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cscmaryann | @cscmaryann | Oct 20, 2023

Wow, this is wonderful and incredible news. I have meningiomas (one removed so far), so don't have the same experience as your wife. I just wanted to pitch in to say this is a great thing and hope you both continue on positively!

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gdcdf03 | @gdcdf03 | Oct 20, 2023

So my surgeon and I decided that the tumor affecting my trigeminal nerves and the pons will create more problems if we allow it to grow so surgery has been scheduled in two weeks. I’ve been anxious and nervous but I’m trusting the process. Thanks to all the positive feedback. Y’all are giving me courage to go through the surgery❤️

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cscmaryann | @cscmaryann | Oct 30, 2023
In reply to @gdcdf03 "So my surgeon and I decided that the tumor affecting my trigeminal nerves and the pons..." + (show)
@gdcdf03

So my surgeon and I decided that the tumor affecting my trigeminal nerves and the pons will create more problems if we allow it to grow so surgery has been scheduled in two weeks. I’ve been anxious and nervous but I’m trusting the process. Thanks to all the positive feedback. Y’all are giving me courage to go through the surgery❤️

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Trust it will go well.

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freebird36 | @freebird36 | Feb 15 1:33am
In reply to @gdcdf03 "Thank you for your response! Glad to heat about tour wife’s successful surgery…The surgeon is giving..." + (show)
@gdcdf03

Thank you for your response!
Glad to heat about tour wife’s successful surgery…The surgeon is giving me 6 months to sit on it, also to find out how fast the tumor will grow. Its been a couple months since we’ve discussed it but I am seeing more changes/symptoms so I feel like if I wait and the tumor grows, I’d have more problems. But if I go thru surgery, i’m worried about the ‘what if’s’ since the tumor is pressing on the pons, putting pressure on my trigeminal nerves.

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Ask the neurosurgeon these questions.
My spouse asked his neurosurgeon
similar questions and his opinion on whether to wait or operate.
The NS explained all very well and gave us his opinion but left decision up to my spouse. I Agee’s with my spouse and NS to remove the tumor as it was in a safe place to access in the brain and possibilities of damage were low.
The NS can explain this based on your particular Tumor location.

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