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I have a menigioma. Should I wait or go ahead with surgery?

Posted by marwalker @marwalker, Nov 4, 2023

My opthamologist ordered an MRI to check out my optic nerve as I have advanced glaucoma.
After getting the results he promptly referred me to a neurosurgeon.
A 2 cm meningioma in the left frontal lobe was discovered along with some brain swelling. I have no obvious symptoms.
The surgeon explained that I could wait, repeat the MRI in 4 more months or have surgery now.
The brain swelling is my concern and is causing me some angst.
I was caught off guard and of course thought of more questions when I got home. ( which I will persue.
Is there someone out there who could address my concerns about the brain swelling? Get it out… NOW????!!
I

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mkoch | @mkoch | Nov 12, 2023
In reply to @suemarie3 "I had a MRI in February due to some pressure and dizziness. Results indicated a 4.5cm.right..." + (show)
@suemarie3

I had a MRI in February
due to some pressure and dizziness.
Results indicated a 4.5cm.right superior parietal mass extending to the superior dural surface.
Immediately made an appt at OSU James Cancer hospital.
Had a craniotomy on Feb 28.
They said it was a meningioma and are most always benign .
In ICU for several days, ready to go home, and the pathology came back malignant.
Determined it was a solitary fibrous tumor of the CNS. Grade III. Very rare.
Had 6 weeks of daily radiation.
I feel like it was a miracle and because of lots of prayers and support - I am still here!
Follow up MRIs and PET scan have been good. Will continue every 3 months.
Exercising, yoga, eating healthy and prayers.
I wouldn’t wait, take care and stay positive!

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Sue Marie, you've been through A LOT. Thank you for sharing your story. I'm 3 weeks post craniotomy and your story has motivated me to quit feeling sorry for myself. Take care!

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cscmaryann | @cscmaryann | Nov 12, 2023

If your brain is truly swelling, your dr will likely give you steroids for that.

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cscmaryann | @cscmaryann | Nov 12, 2023

Has anyone had experience with heat-induced headaches? I think I was unwise to attend an outdoor veteran's day service where it became quite hot - about 79-80degrees, with clothing that was too hot. When I felt I was getting overheated, I waited because a breeze started to cool things down briefly. I started getting headaches which have lasted 2-3 days, after I thought I was not going to have more headaches. (last surgery Oct 5 for external "repair" surgery). Do you think the heat could have made my brain swell? I did ask this question to my surgeon, but it is the weekend, so I will likely hear tomorrow. Thank you.

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Moderator
Amanda Roe | @amandajro | Nov 15, 2023

Hello @birdie1234. I can confirm that Mayo Clinic in Jacksonville, FL does see patients for meningioma. Here is a link to view the doctors who specialize in meningioma care: https://www.mayoclinic.org/diseases-conditions/meningioma/doctors-departments/ddc-20355650?locations=Jacksonville%2c%20FL#e60ad0d0bc354936a881a57de90ea8a3

Perhaps the appointment desk mentioned not having access and, therefore, recommended you try Mayo Clinic in Rochester, MN? Do you happen to recall?

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1 reply
patbaret | @patbaret | Nov 26, 2023
In reply to @bellachele68 "I recently had two smaller meningiomas removed surgically. One 1 cm and the other 3/4 cm...." + (show)
@bellachele68

I recently had two smaller meningiomas removed surgically. One 1 cm and the other 3/4 cm. I haven't felt this good in years. Neither was causing obvious symptoms...or so I thought until after surgery. I have clarity of thought I haven't had for years! I was surprised at how little pain there was after surgery and during recovery. My surgery was Aug 23, 2023.

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Just wondering with such small meningiomas, why your NS did not suggest gamma knife instead of going thru surgery?

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1 reply
cscmaryann | @cscmaryann | Nov 27, 2023
In reply to @birdie1234 "patbaret.......I also have a Meningioma and called Jacksonville Mayo. They told me I would have to..." + (show)
@birdie1234

patbaret.......I also have a Meningioma and called Jacksonville Mayo. They told me I would have to go to Rochester, Minnesota to their main branch to have them look at it. I was told they don't do Meningioma's in Jacksonville. : (

Editor's Note:
Correction:
Mayo Clinic in Jacksonville, Florida treats meningiomas
Mayo Clinic in Rochester, Minnesota, Mayo Clinic in Phoenix/Scottsdale, Arizona, and Mayo Clinic in Jacksonville, Florida, are ranked among the Best Hospitals for neurology and neurosurgery in the U.S. News & World Report Best Hospitals rankings.

Read more about meningioma care at Mayo here: https://www.mayoclinic.org/diseases-conditions/meningioma/care-at-mayo-clinic/mac-20355651

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birdie1234: I strongly suggest asking if Mayo in Jacksonville accepts your insurance. They informed me that they do not accept my insurance, although Mayo Rochester does. Each entity has their own insurance situation.

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1 reply
birdie1234 | @birdie1234 | Nov 27, 2023
In reply to @amandajro "Hello @birdie1234. I can confirm that Mayo Clinic in Jacksonville, FL does see patients for meningioma...." + (show)
@amandajro

Hello @birdie1234. I can confirm that Mayo Clinic in Jacksonville, FL does see patients for meningioma. Here is a link to view the doctors who specialize in meningioma care: https://www.mayoclinic.org/diseases-conditions/meningioma/doctors-departments/ddc-20355650?locations=Jacksonville%2c%20FL#e60ad0d0bc354936a881a57de90ea8a3

Perhaps the appointment desk mentioned not having access and, therefore, recommended you try Mayo Clinic in Rochester, MN? Do you happen to recall?

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Amanda Roe.....Thanks for the reply Amanda.......they were very definite that they do not treat Meningioma's in Jacksonville. Rene put me on hold for 6 or 7 minutes while she checked with someone in the Neuro dept. ( the neurosurgical dept that she was in ) and they said no once again. I'm at a loss right now as to what to do.......??????? I guess I will wait a bit and then call there for the 3rd time. I'm beginning to think I would be better off at the Rochester location.

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birdie1234 | @birdie1234 | Nov 27, 2023
In reply to @cscmaryann "birdie1234: I strongly suggest asking if Mayo in Jacksonville accepts your insurance. They informed me that..." + (show)
@cscmaryann

birdie1234: I strongly suggest asking if Mayo in Jacksonville accepts your insurance. They informed me that they do not accept my insurance, although Mayo Rochester does. Each entity has their own insurance situation.

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Thanks Maryann......trying to get into Jacksonville with an appt. is a problem that I'm about to give up on...but I will call ( when I find out where I'm going) to find out about insurances. That may be another huge problem ....

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bellachele68 | @bellachele68 | Nov 28, 2023
In reply to @patbaret "Just wondering with such small meningiomas, why your NS did not suggest gamma knife instead of..." + (show)
@patbaret

Just wondering with such small meningiomas, why your NS did not suggest gamma knife instead of going thru surgery?

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Gamma knife was not an option for these removals due to placement. One was blocking my sagital sinus artery extensively and thrombosis was a concern.

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1 reply
patbaret | @patbaret | Nov 28, 2023
In reply to @bellachele68 "Gamma knife was not an option for these removals due to placement. One was blocking my..." + (show)
@bellachele68

Gamma knife was not an option for these removals due to placement. One was blocking my sagital sinus artery extensively and thrombosis was a concern.

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I understand. Placement seems to be a big factor. Learning as Igo along. Hope your doing well.

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