Meningioma: Anyone else? I'm frightened

Minnesota is basically your neighbor. I would go to Mayo Rochester, MN. I fly there from down south. It is so worth the time, effort and expenditure to be at the best place you can.

To MKoch
My doctors consulted with a team. It was determined to wait 6 months and have another MRA. They did mention the possibility of going through the groin to drain or repair. Another option is to go directed into my head to correct it that way. The procedure you mentioned was said explained in your terms, so it may or not be the same. They are willing to perform the procedure now, but the recommendation is to wait. It may never grow bigger. He said if I were 45, they would do the surgery now because I would have another 30 years ahead of me. Since I’m 75, it is felt a watch and see is best. Why put me through the risks when it may not grow. Depending on the testing in May for both the meningioma and the aneurysm, I will make a decision one way or another. Right now, I’m a walking time bomb. I guess we have to evaluate risk over reward. Keep me posted and I will do the same. Good luck.

I agree, best hospital, best possible outcome. That’s why I chose the recently merged MassGeneral/Brigham and Women. Mayo is number 1 in the country, I believe. You can’t beat that! Lahey could not have done my procedure because they do not have the technical equipment. Let’s face it, you can have a bad experience anywhere, so increase your odds and go to the best possible place your insurance allows. My particular meningioma is so involved around critical nerves and pituitary gland and carotid artery that risks are too great. Every situation is different. I’m actually having a triple cervical fusion on Dec. 9, Then onto the others in May. Be sure to ask the doctor his best suggestion if it were his family member.

I am 69 yrs old male currently at the Mayo in Rochester. I had a 2.6 cm by 2 cm by 2.3 cm meningioma removed last Monday Nov 25.
The surgery lasted 7 hours and my masively deviated septum was corrected. ( that was great) the drs informed me that they were very happy with the surgery, and they were able to remove all of the meningioma. I was surprised at this news as it had surrounded both cart arteries the pituitary gland and was pressing on my optic nerve. I was having blurred vision in my left eye.
Immediately after surgery I had a very significant loss of vision in both eyes. My right eye was 20/20 prior to surgery. After about 36 hours most of my vision has returned to my right eye.
I am early into my recovery, and I think only time will tell.
The big question I have now is the Drs want me to be seen by a Neuro oncologist. The pathology came back benign type 1 meningioma. No one has been able to tell me why an oncologist is being brought in now? I am experiencing mild headaches and very sensitive to bright lights.
I’ll let you all know as things progress.

That’s fantastic! I’m not sure why you would see the oncologist. Maybe it’s their protocol?

Best!

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.

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.

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

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.