Olfactory groove meningioma

Hi, @averagewoman — firstly, I wanted to apologize that your post has somehow escaped notice till now. Welcome to Mayo Clinic Connect. Glad you posted here.

Sounds like you and your neurologist have been very vigilant with actively watching and monitoring your situation, which is wise.

You may also wish to view these discussions:
– Watching a Meningioma Brain Tumor https://connect.mayoclinic.org/discussion/watching-a-meningioma-brain-tumor/
– MayoClinicNeuroChat Live from American Association of Neurological Surgeons Annual Meeting https://connect.mayoclinic.org/webinar/mayoclinicneurochat-live-from-american-association-of-neurological-surgeons-annual-meeting/

I'd like to invite @robinem @lindajean @nancye3 @cnesselroad @pranas @wkindel into this discussion to share their insights. I'd also like for you to meet @kdubois and @dawn_giacabazi, who may also have some thoughts for you.

How did your parathyroid surgery go, @averagewoman? How are you feeling about the olfactory groove meningioma surgery coming up next year?

The parathyroid surgery went okay on June 22, but it resulted in Graves Disease and Thyroid Eye Disease (double vision, distorted poor vision, yuck). So, I've been dealing with that with the pending doom of the meningioma surgery in the back of my mind. I get an MRI in May and will see what the surgeon says is necessary at that time. I hope it doesn't grow again. Thanks for writing to me. I'll be checking out the links.

Tumor has been stable since last year. Surgeon said I can have surgery or watch and wait a year. I opt not to have my skull cut open. Another MRI May 2020. 😬

I can empathize with not wanting to have surgery. Watch and wait is common with some brain tumors. You may wish to connect with others who have chose this option in this discussion group:
– Watching a Meningioma Brain Tumor https://connect.mayoclinic.org/discussion/watching-a-meningioma-brain-tumor/

Congrats...all of us on watch and wait LOVE stable tumors! I have been on watch and wait so long, I am down to an MRI every 3 years to avoid any more contrast than needed. Haven't gotten my results back yet, but I hope I am as lucky as you! Check back in with us next year and let us know how your 2020 one goes....we LOVE to cheer each other on 🙂

Hi. I’m 62 years old and just diagnosed with a 7mm Olfactory Groove Meningioma. Watching till August and the scheduled for another MRI to see if it has any growth. Would like to hear from anyone that has been diagnosed with this type of tumor, symptoms and if you have had surgery.
Thank you!!🥰

Hello @cpidgeon59. You will notice that I have moved your post into an existing discussion on olfactory groove meningiomas, which you can find here: https://connect.mayoclinic.org/discussion/olfactory-groove-meningioma/

Members such as @lindajean and @averagewoman have been shared previously in this discussion and may be able to come back and connect with you for support.

Are you considering a recommended surgery at the moment?

Thank you for connecting to others. I am having another MRI in August 2022 to see if any growth as I’m having continued headaches. Will know more at that time.

Hello everyone, They found a heterogeneous en plaque meningioma above the ethmoid sinus in 2024 via sinus CT scan from a referral ENT in Aug. ( which ended up being a pre-surgery! without my consent-6x more radiation:( I didn’t want to go back to this ENT.
Then first head and brain MRI in Oct. 2024. I haven’t had a biopsy and the Neurosurgeon didn’t suggested, but insinuated it. If they are going to cut my melon ( skull- even with a minimal hole, why didn’t they remove it when it was smaller😪)?
I haven’t been told how close this tumour is from sinus veins, I asked the Neurosurgeon and he said no… I still don’t understand location fully…
Due to suspected nasal allergies nasal drip, the Neurosurgeon I was referred to decided to investigate cerebro-spinal fluid leak (CSF), and got a second MRI on Feb.2025. ( Measured 2.7x2.2x1.3cm.) Results were good, no leak. He told me the tumour is considerably calcified and when found incidentally it measured on the first MRI 2.5x2.5x1.2cm. up to date ( third MRI was in Nov. 2025 the tumour has grown to 2.8x2.8x1.5cm. and because of the location ( skull based, extra-axial, left anterior cranial fossa ( left frontal lobe by the skull base) and with mass effect ( pressure) on regional sulci ( brain hemispheres midline ) and small indentation in falx cerebri ( a slight midline shift); my sense of smell has been reduced and it is worsening and also my sense of taste😪
I am in Canada and not sure if this tumour is operable or not, my guess is that it is an olfactory groove subtype meningioma and since there is hyperostosis ( bony growth) on the ethmoid bone ( due to its calcification); they would possibly need to remove all bone surrounded by the tumour.
I was just referred to an ENT ( Feb.2026) and he is also a skull base tumour surgeon to check my nose with endoscopic examination and he referred me to another ENT surgeon part of the skull base program for brain tumors to get a smell test.
He said that at this point, if they would do surgery ( either frontal craniotomy with a flap) or bi-frontal they will have to literally cut and destroy my olfactory nerves to be able to remove all of the tumour ( soft and calcified cells) and that not doing surgery could be safer for me to try to find out how much sense of smell I have lost.
He said that sense of smell is important yes, but if they would do surgery to remove the tumour, I could end up with a myriad of complications, plus a total loss of smell as they would have to cut my olfactory nerves to access the tumour…😪
This ENT gave me nasal steroid spray prescription to use ( which my endoscopic examination was normal, airways open, no polyps, no mucus build up but only a very minimal inflammation; (which I have a big dog inside and I’m very allergic to cats)
He told me that the spray was to supposedly rule out that my loss of smell was due to the allergies I suffer ( which they are very minimal-only sneezing and post-nasal drip) but I have never been tested for which exact allergies I’m allergic to)
The ENT said it is important to check this, because they could not be the olfactory nerve deterioration or tumour pushing. I am not a meds person and prefer to wait to leave my nose as is until they test my sense of smell; because otherwise with the spray ( which I also think it was a very high dosage with 6 refills-literally a 3 months prescription daily 2 sprays of 50mcg in each nostril 2x a day total of 400mcg. of nasonex ( mometasone) which contains citric acid and I told the nurse I was very allergic to. In the past, the other ENT prescribed something with lactose, and the pharmacy switched this to flonase ( fluticasone) but I didn’t want to use it for 10 days, let alone for 3 months…Because my nose wasn’t stuffed then either.
What do you think? Shall I wait until I have the smell test and not use anything? I will be willing to try saline nasal rinses, but my nose is not dry or stuffed.
I also researched that vasodilators ( as in freezing meds injection from a dentist) are not good for a person with mass effect brain meningioma because it could provoke a blood clot, or lack of blood circulation in the brain vessels.
Needless to say, I am very careful of what I take since the meningioma “diagnosis” ( which only the radiologists have noted on my MRI’s: “ suggests, might be…most likely” and the Neurosurgeon said they treat people, not images (?) I don’t know what he meant?
I also researched that there could be meningioma mimics. How to fond this out? only with biopsy?
Even herbal/food supplements or prescribed meds blood thinners, for high BP or high cholesterol could be dangerous, due to thinning the blood too much and provoking swelling or a brain bleed…
Please help! My choice will be to get an fMRI which will be more accurate with the olfactory nerve testing, than an ENT smell test. I want to request this, but I think this is time sensitive due to the growth becoming to medium size tumour at 3cm.+
Any other hopeful insights? I also found out that loosing the sense of smell and taste affects memory, executive function and emotions😞It’s not “just the smell and taste” but it is all linked…
Another question, due to the brain tumour mass effect, will the lack of oxygen if I were to travel by plane on a long haul trip, will this be concerning as to cause intracranial pressure?
Thank you so very much in advance. I have an appointment booked with my Neurosurgeon (because I requested it) on March 17, and will ask for specific information, as well as my options. 🙏🏽
My Neurosurgeon put me on the active surveillance and left me in charge of self-reporting symptoms?) but never said which symptoms. Hugs to everyone who live in the uncertainty.
I wish I had finances to let Mayo Neurosurgeons make critical decisions like one comment here.🙏🏽😪