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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@rsfcowgirl

What had your Dr advised? Have you sight a 2nd professional opinion?

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I saw one neurologist and he advised me to go thru surgery right away. Then I spoke to a surgeon and he’s advise was to wait about 6 months depending upon my symptoms. I am also scheduled to see another neurologist in a few days.

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@gdcdf03

I saw one neurologist and he advised me to go thru surgery right away. Then I spoke to a surgeon and he’s advise was to wait about 6 months depending upon my symptoms. I am also scheduled to see another neurologist in a few days.

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The one who has the expertise in surgery (vs not or other options) is the neurosurgeon. Not the neurologist. You need a 2nd neurosurgeon opinion, not a neurologist opinion. Huge difference. Huge.

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@rsfcowgirl

The one who has the expertise in surgery (vs not or other options) is the neurosurgeon. Not the neurologist. You need a 2nd neurosurgeon opinion, not a neurologist opinion. Huge difference. Huge.

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I'm not even sure a neurologist can even advise you regarding surgery under the scope of that specialty.
I think it's great the NEUROSURGEON said to wait 6 months and then revaluate. It's really not up to you or the neurologist whether you'll have surgery or not because the neurosurgeon operates at their own decision. You can't just go in and tell them to perform brain surgery. They have to decide whether it should be done. They base this on many factors. Maybe a different neurosurgeon would have a different opinion. That's when you'd have a choice to make in this. Right now, you don't have a surgeon ready to operate at this time. The 2nd neurologist won't have an influence either bc neurogists don't do any surgery. They can't direct a brain surgeon to do brain surgery either.
How all goes well. You have 6 months to think about possible options. This forum is a great place to learn much in 6 months.
In the meantime, you can benefit from your other non surgical options. And you may possibly learn of additional non surgical options from this forum.
It's definitely scary. But the more information you obtain, the more you will feel in control of your life and the more confident in your decision-making, and the less helpless you will feel.
Sorry you have to walk this path. But with Connect, you don't have to walk it experientially alone.
Try to relax a little since you're not under pressure for an immediate decision.

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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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@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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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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@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!

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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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@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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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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@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

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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