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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@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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What are triminial nerves? I am having what I call “pins and needles” throughout my whole body since I had my 1st MRI in Nov 2023 and having lots of trouble sleeping Jj

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@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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Your age is also a consideration. If you are young-ish, waiting is a good game. But if you’re older, the impact of anesthesia could be far more troubling in 3-5 years vs now. If surgery is inevitable, I’m a sooner vs later as was my husband 10 years ago. He was 77 and opted for surgery after watching his meningioma continue to grow for 9 months. But his tumor was readily accessible, so an “easy” decision.

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@djw

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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Yes, my spouse has had similar experiences. Gr 4 gbm multiform , total resection of tumor, rad and Temodar, now just maint. Cycles 5 days on 23 days off. His last two MRIs were clear, he’ll keep getting mri ev 2 mos. He’s just very tired a lot it can still do minor activities , go on short walk, go out to store etc..luckily his tumor was in a location that didn’t drastically effect him. He still has slight shakes in rt hand and mild aphasia but for most part he talks and moves almost 100% normally..

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@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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@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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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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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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@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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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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@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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