Atypical Grade 2 Meningioma Recurrence

Posted by lizzie00 @lizzie00, Aug 25 3:00pm

I had a craniotomy to remove an atypical grade 2 meningioma about 5 years ago, right frontal cortex. It looks like the surgeon missed a thin tumor growing along my sagittal sinus. Well lets just say, she did not tell me about this growth! Removed the plum sized tumor up front and closed up my head and called it a day. Fast forward until now...this thin growth has invaded my sagittal sinus and is growing inside it. It now cannot be removed. It is so large it is acting like a giant blood clot. I have already had two strokes. I was seen at Vanderbilt oncology and was told that I would not survive another surgery. I was also told that there's no way the other surgeon did not see the other tumor when she opened up my head. Now we will try radiation or clinical trial to extend my life. I am now plagued with daily seizures, horrific head pain, nausea, neurological issues, and so much more. I was an active police officer before and my life has been turned upside down. I am devastated. The worst part is this other tumor could have been resected and now its invaded my blood supply over the last 5 years. I will say that Vanderbilt has helped a lot. They have put me on great medications to help with the pressure in my head. But I still struggle on a daily basis.

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sjt10323 | @sjt10323 | Aug 26 10:26am

Hello,
I am curious, is Vanderbilt the only place you have been treated. Have you ever received a 2nd or 3rd opinion on what you are going through? If not, are you taking medication that could be causing the systems you are going through? (I refused a certain drug because of how it made me feel and it was only a couple of weeks after they prescribed it to me. They changed it and it has been almost 2 years without issues) Please question everything you are going through.
I will pray that you are and will get the treatment you deserve. God Bless.
Sjt

bfschemikerin | @bfschemikerin | Aug 26 5:05pm

Hello,
I am sorry to hear your ordeal. You seemed to be angry with your surgeon who performed the resection of your plum size tumor.
You stated “I was also told that there's no way the other surgeon did not see the other tumor when she opened up my head.” I am a bit skeptical about that statement. Was there really another tumor? Did you have a chance to look at your MRI? I bet your tumor boarded on the sagittal sinus and that’s why your tumor most likely was not entirely removed.
I have learned from my neurosurgeon that it is challenging to perform surgery close to the sagittal sinus. One wrong cut and you are toast. Residual tumor tissue in these cases is treated with a gamma knife. I also learned that even if you expose the sagittal sinus to gamma knife (SRS) radiation that it doesn’t cause major damage.

Did you have any follow-up MRI’s? It is also not so easy to distinguish scar tissue from tumor tissue. Your surgeon should have communicated to you these difficulties so you would have been better prepared. But that is the past..
For your current situation, my surgeon recently published a long-term study on the problem you have now. It would suggest to me that you should look into stereotactic radio surgery to treat the growth in your sagittal sinus.
Here is the major takeaway from the publication in Neurosurgery, July 2, 2025
“Stereotactic radiosurgery (SRS) is safe and effective in managing small to medium sized superior sagittal sinus invading meningiomas (SSS), especially when the tumors involve the posterior one-third of the SSS. For larger SSS meningioma with symptomatic mass effect, adjuvant SRS for residual or recurrent tumors provides long-term tumor control.”
I hope this puts your condition a bit more in perspective. Good luck and I hope you are in good hands

kdog1957 | @kdog1957 | Aug 28 9:17am

Hello,
Sorry to read of the struggles with the invasive meningioma. After the surgery, was radiation therapy (IMRT or gamma knife) recommended? It typically is for atypical meningiomas. Best of luck with your treatments going forward.

Maryann | @mkoch | Aug 29 1:00pm

First of all, to Lizzie who originated this post, I am so sorry that you are going through the stress of dealing with yet another meningioma. I was quite alarmed when I first read it, as I also have a meningioma (8mm) that is growing alongside my sagittal sinus, longitudinally. I have asked my neurosurgeon if he thought it would ever grow to invade the sinus and his opinion was, "no." Of course, I don't accept that as a definitive. And thank you, bfschemikerin, for the information specifically referencing stereotactic radiosurgery for sagittal sinus meningiomas. Your post has allowed me to relax, again, and accept my neurosurgeon's recommendation to watch-and-wait as I know if the worst happens I have a good option.

mgw2025 | @mgw2025 | Aug 31 10:55am

I agree with the others--go for a second opinion (at Mayo Clinic which deals with lots of meningiomas). I feel hopeful when reading the comment made by another person with meningioma about a specific radiation technique that should be helpful to you. And I, too, am curious about whether you have had followup MRIs in the past 5 years.

Texastrails | @jnf | Sep 1 12:16pm

There is a recurrent meningioma zoom session being offered by Stanford next week—current research, next steps, Q&A. Hope this helps!
https://stanford.zoom.us/webinar/register/WN_vxxHUqmtQCS_DqlI1o13QA