Meningioma: Anyone else? I'm frightened

I did get a thorough second opinion. My situation was serendipitous. I had cataract surgery in LA. I thought the blurred vision was a result of the cataract. I had multi focal lenses installed and that’s when we knew something was wrong. My cataract surgeon started out sending me to a Retina specialist. There was slight decrease in blood flow in optic nerve. I was then sent to UCIrvine med center and was seen very quickly by a Neurophthalmologist. .
I then had mri w/ without contrast. It showed the tumor pressing on optic nerve. I knew I wanted it removed. There was still a slight chance that my vision might improve if pressure was removed. I met with the head of neurosurgery and an ear nose and throat surgeon at UCIrvine. They proposed removal up through my nasal way not a craniotomy. I was very impressed but as we all know we are very scared. I had secured a consult at the Mayo the day before I was going to have my operation. I postponed the surgery and went to Rochester.
On Oct 25, 26 I was seen by all of the same specialists that I saw at UCI. They came to the same diagnosis.
They offered me a surgery date for Nov 25. I decided to have the procedure done at Mayo.
My advice is get the second opinion and ask both teams all of the same questions. UCI doctors discussed a procedure to not necessarily attempt to get 100% of the tumor.
Several reasons. #1 risk of damage to surrounding vital structures # 2 the very slow growth rate of meningiomas, #3 until surgery was performed the surgeon would not know the composition of the meningioma. Some can be fibrous and stick to everything. Others can slide away from structures more easily.
and #4 we could monitor and go back in with a craniotomy later if needed.
I did not have this conversation with the Mayo drs. So when I came out of recovery and the team was really excited that they got 100% of the tumor I was shocked. They said it separated easily.
As I’ve said time will tell I’m 6 days post surgery.
The oncologist bothers me, it’s a clerical scheduler who is insisting on the visit and it can’t be done virtual. I live in San Diego Ca.

To MKoch,
I did not realize you had a date planned. I wish you the best of luck and a very speedy recovery. I am going in on Dec. 9 for the 3 disc fusion. I'm hoping it won't be a problem due to my aneurysm. I too will let you know how I make out with this.
Maryann

Week ago my CT scans ( done because of sinuses issues ) were revealed and 2 cm big meningioma, detected on my right frontal lobe. I’m waiting for my MRI appointment. It is the most terrifying information that I am not sure how it handled.

An MRI is more definitive than a CT scan for meningiomas. So try to not be too upset until you get better information from the MRI. I think you will find people on this forum supportive. Let us know what the MRI reveals.

my doctors have told me many people never get symptons and never get much growth ….and can stay on wait and watch for ever.

My doctors and i don’t believe in non-essential surgery

i now have surgery scheduled. The tumor has grown down headed towards dangerous teriorith

I just saw this. I have been away for Thanksgiving. Thank you for your reply. I did bring up my age with the neurosurgeon and his reply was, "You're 72 years young." I always suggest to people on this post to get a second opinion, then settle on a neurosurgeon you trust, and follow their recommendation. So I guess I should follow my own advice. (insert a smily face) All of our situations are different because there are so many different variables involved. I did have a CT Angiogram which is more detailed than an MRA so perhaps the neurosurgeon at UCSF saw something that made him lean more in the direction of coiling the aneurysm sooner than later . At any rate, I am set to go December 16th and will let you know how it goes.

verdescape: Congratulations on the successful removal of all the meningioma even though it was located around so many critical structures. I am a success case as well, having had a 3 centimeter meningioma completely resected 1/16th of an inch from my optic nerve a year ago. I had extreme double vision afterward for 3 months. So I am hopeful your vision will return to normal within that time frame. My neurosurgeon was sure he didn't nick the nerve during surgery and I was told my double vision was due to generalized trauma to the nerve. Also, swelling is a given after a craniotomy and that could put pressure on the surrounding nerve tissue. I would like to bring up a point with regard to the vision issue. After surgery I was immediately referred to a neuro-opthamologist because of the vision problem. Given your vision issues are you sure the referral isn't for a neuro-opthamologist as opposed to a neuro-oncologist? Hope you aren't offended that I would ask/suggest that. It just seems so odd given the grade of your meningioma along with being told it is benign.

I did get a thorough second opinion. My situation was serendipitous. I had cataract surgery in LA. I thought the blurred vision was a result of the cataract. I had multi focal lenses installed and that’s when we knew something was wrong. My cataract surgeon started out sending me to a Retina specialist. There was slight decrease in blood flow in optic nerve. I was then sent to UCIrvine med center and was seen very quickly by a Neurophthalmologist. .
I then had mri w/ without contrast. It showed the tumor pressing on optic nerve. I knew I wanted it removed. There was still a slight chance that my vision might improve if pressure was removed. I met with the head of neurosurgery and an ear nose and throat surgeon at UCIrvine. They proposed removal up through my nasal way not a craniotomy. I was very impressed but as we all know we are very scared. I had secured a consult at the Mayo the day before I was going to have my operation. I postponed the surgery and went to Rochester.
On Oct 25, 26 I was seen by all of the same specialists that I saw at UCI. They came to the same diagnosis.
They offered me a surgery date for Nov 25. I decided to have the procedure done at Mayo.
My advice is get the second opinion and ask both teams all of the same questions. UCI doctors discussed a procedure to not necessarily attempt to get 100% of the tumor.
Several reasons. #1 risk of damage to surrounding vital structures # 2 the very slow growth rate of meningiomas, #3 until surgery was performed the surgeon would not know the composition of the meningioma. Some can be fibrous and stick to everything. Others can slide away from structures more easily.
and #4 we could monitor and go back in with a craniotomy later if needed.
I did not have this conversation with the Mayo drs. So when I came out of recovery and the team was really excited that they got 100% of the tumor I was shocked. They said it separated easily.
As I’ve said time will tell I’m 6 days post surgery.
The oncologist bothers me, it’s a clerical scheduler who is insisting on the visit and it can’t be done virtual. I live in San Diego Ca.

Congratulations on getting the surgery done and the tumor removed! I had a similar operation at Mayo Phoenix on Oct 23. As I understand it Mayo strongly supports a team approach where doctors from all related disciplines give input as needed. I had a followup appointment with radiation oncology as well. As the MRI confirmed all my stage 1 meningioma had been successfully removed there was nothing for them to say except congrats and we will keep connected for followup if needed. Maybe send a message through the portal and ask about a followup with them to be scheduled after your next MRI? I think they would understand that.