Meningioma - I'm scared to watch and wait

thanks for the referral to meningioma mommas -- definitely will check it out -- in 2009 I was diagnosed with a benign meningioma so small that most MRI radiologists and some neurosurgeons cannot find it -- even with contrast -- however, the first lab report was off by a factor of 100 -- and I thought it was wrong because wouldn't I know if I had a golfball sized tumor? Now, I know that it is very possible that even a golfball sized tumor could go unnoticed for decades. My tumor was discovered by accident, and since then I have undergone annual MRIs w and w/o contrast to ensure that it is not growing. Yes, it could be removed, but why surgery when life can go on unchanged without it. Now my neurosurgeon suggests that I have an MRI only once every other year because MRI's are not all good for you, and could be harmful. I countered with a compromised and said how about one without dye every year, and one with dye every two years? The only symptom I MAY have hade was a few seconds of double vision in an eye that is not my best one, and has other reasons for not behaving well.

Thoughts?

This is my 2nd year of knowing that this exists and is growing slowly. Found out about it by accident. The docs don't want to have anything done to this tumor that sits between my brain and my skull. Also they don't want me to have any MRIs. The #1 doc doesn't want to see me again and the #2 doc wants me to contact him if and when I have any of the symptoms such as the eye problem you were told about. I'll keep looking for info that suggests new treatment. Thanks for your contact.

I was diagnosed almost 2 years ago,,I was having some problems with dizziness and nausea for over a year,,knew there was a cyst on my brain from a previous full body scan so after so many tests my new doctor decided to have me get an MRI w contrast to recheck the cyst ,,that's when they found the meningioma ,,the neurosurgeon I was sent to said I can't have surgery because of the location,,,I'm feeling extremely frustrated because I have lost a lot of my sense of smell, hearing loss, my left hand is weak and constant tingling in my fingers,,foggy head,,memory not so good,,,am I going crazy or are these symptoms of the tumor?

Welcome to Connect Debbie,
I'm so glad that you found this discussion with @eleanor1931seminara1931 @lindajean @55soon @rareeby and @cynaburst who can relate to your experience.
I suspect you are not going crazy. Have you talked to the neurosurgeon about these symptoms and their relationship to the tumor?

Hi Colleen,,thanks for responding,,when I mention any symptoms to my neurosurgeon and neurologist they pretty much just ignore me,,,I will be going in for another MRI with contrast in the next few months so will be interesting to see if there has been any change,,,

Have you looked into Proton Beam Radiation Treatment - My meningioma was 5 years ago, up against the brain stem. Proton Beam has has an amazing Bragg-Peak phenomenon that prevent radiation from traveling beyond the tumor. Do some study on this.

See reply from fiddle mama. I was also told that surgery was not an option. Proton Beam was a miracle answer for me.

Thank you for this info. My meningioma is size of 1/2 of a peanut. Right falx area. Was told inoperable 5 yrs ago when diagnosed. Was offered gamma knife if ever necessary. So far they tell me it's calcified and no change per MRI of 1-2016
I am very grateful to know of this if I should ever need further treatment other than "watch & wait" which is never easy. Thank you again. Take care, as they say, we're all in this together!

Eleanor, don't feel that you are alone. I am also a senior and was recently diagnosed with a Meningioma in the right frontal lobe. First MRI revealed a small 5 cm tumor. I have been told to" watch and wait "and am not satisfied with that answer. I am a retired veteran and will see a Neurologist at the VA next week. Depending upon what I am told, I will go from there. I am also a retired medical professional. Yet, this diagnosis is frightening to me as well. Hang in there and we will get through this together.

Welcome to Mayo Clinic Connect, @mpe47.

Watching and waiting would be tough to experience. I hope this following information helps some while you are waiting. I found it on a blog post and thought it was good advice.

You may want to consider these active steps if you are in a watch and wait situation:
Be physically active — get in aerobic exercise at least 3 days each week
Eat healthy foods — leafy greens, fish, lean meats, fruits and vegetables
Reduce stress levels — incorporate yoga or meditation
Be aware of any changes in your body — report any new symptoms to your doctor
Get your blood tests and scans on schedule — outline your monitoring plan together with your doctor
Understand next steps if active treatment is necessary — being well informed will help with your sense of control over the situation
Watchful waiting should be considered an active strategy, as close monitoring can give you reassurance that your cancer is stable, and not aggressively growing. If a cancer is found to be progressing during the monitoring stage — then additional treatment strategies can be started.

@mpe47, keep us updated with what your Neurologist has to say. I've got fingers crossed for you and I'm sending well wishes your way!