Watching a Meningioma Brain Tumor

the ENT surgeon who works with the neurosurgeon refuses to operate, too many risks for me so I will see what the oncologist says tomorrow

Hello - sorry to hear about your situation. I had a benign meningioma successfully removed 2.5 yrs. ago. Before I decided to have the surgery , I interviewed 3 NS and checkked their medical reputation with the NS certifying association before I chose the NS who did the surgery. So do get another opinion

I didn't want to wait so I had surgery 4 years ago when I was 66yrs old. I had 2 tumors and 1 was 3 - 5 cm and the other smaller but in a very difficult area to remove. The one in the frontal area was 5 cm and removed, the one on my optic nerve is still there and will not ever be removed. I had proton radiation for 28 days in the hopes that it would stunt it from growing anymore. I had MRI's every 6 months until this January. Now they have not seen and change for 4 years and will only do MRI's once a year, unless I experiece and symtoms that would suggest need to check on the tumor. I was scared to death about surgery but I knew I would not be satisfied with myself living with all my symtoms for the rest of my life. They would keep me from doing all the things I enjoy for my life. The surgery was a partial success and I'm good with it. My symtoms are minnial. I still have headaches and recovery took longer than I was expecting, 2.5 months but I returned to all my activities. I run 3 miles several times a week, stair climber couple times a week and play golf 3 times a week. Yoga is a release once or twice a week. But the best part is I'm able to spend time with my grandkids and play golf with them and go to all the sporting activities. I can enjoy my family and appreciate the time I have with friends and family until something changes. Life is good and the risk of surgery was nothing to the reward of life I have received with its results. Mayo handles all of my medical because I am fortunate to live in AZ and we are only an hour away from the hospital. Dr Zimmerman is my surgeon and I have confidence in him and all the care givers at Mayo. I have used many of them over the last 17yrs. This isn't my only health issue but I was one of the biggest. As a team they are most knowledgable doctors and up to date treatments they are on the cutting edge. I can't thank enough. Good luck to you and I hope you feel comfortable with whatever you doctors tell you and you can make a decission you are comfortable with for your future.

@sarasally2, I can understand your apprehension if your doctors don't agree. Hopefully at Tuesday's consultation the team will have a united opinion and treatment recommendations. As for questions to ask, see these lists:
https://www.cancer.net/cancer-types/meningioma/questions-ask-health-care-team
https://braintumor.org/brain-tumor-information/before-surgery-questions/
https://www.mayoclinic.org/diseases-conditions/meningioma/diagnosis-treatment/drc-20355648 (scroll to the bottom of the page)

Have you considered getting a second opinion at another institution?

The tumor has doubled in size. Surgery is frightening but often the only real option. Mine was benign but large enough that I elected to have it removed even though I had no symptoms. Please find a good neurosurgeon that you can trust and get on with it. When you open your eyes you will be glad that you did.

I went to Duke in NC last year and they didn't agree on whether to do surgery or not so we did the wait and see thing as they thought it was not causing my symptoms, I just had another MRI and the tumor doubled in size. I go Tuesday to consult with the radiation oncologist and don't feel comfortable because they didn't agree last year and they don't agree this year. I have had surgeries,etc at Duke and was comfortable but this time I am afraid and distrustful. I am 74. Not sure what questions to even ask.

Be afraid of the surgery if you wish but if it is necessary then do it! The surgery itself is no worse than any other but the down time after is really a pain in the ass. I cannot chew a piece of steak on the right side of my mouth and my reading of putts is awful. I am getting better but it is a slow process. I am 81 yrs old and the meningioma was about 7cm. Medications (Keppra) that you must take for a while is horrible, but life goes on and that is the good part.

Thank you for the advice, Lisa. The Stanford doctor who suggested a second opinion at Mayo Clinic was herself a department head for around 20 years at Mayo in MN. The neurosurgeon I saw here just did not inspire confidence. He could not answer the primary question about safety of anticoagulation for menigioma patients and I am not sure how much experience he has with the procedure that I might need. Stanford has another neurosurgeon with extensive skull base surgery experience whom they very recently recruited from Pittsburgh. I'm not sure if the politics of the department would let me switch. The cardioversion was a couple days ago, but I suspect that I am back in Afib based on symptoms yesterday. However I am protected by the anticoagulant Eliquis. My cardiologist felt that it is safe to anticoagulate meningioma patients after he had discussions with neurologists and neurosurgeons. I have opted for wait six months to twelve months and repeat the MRI. I might do it at Mayo or with the other Neurosurgeon at Stanford. Really, the watch and wait is nerve wracking. However, I want to get my heart into as good shape as possible prior any possible surgery. I most appreciate your suggestion and your taking the time to advise me.
Alex

HI, @alex31 - if you are considering getting a second opinion at Mayo Clinic, you might check out this page to request an appointment online or by phone http://mayocl.in/1mtmR63.

When is your cardioversion?

I fell and smashed my face, went to ER, did CT scan, found meningioma, had surgery, Trying to recover, not chewing very well, playing golf again, have numbness on entire right side of face, this sucks. Having surgery on brain is a pain in the ASS