Watching a Meningioma Brain Tumor

Hi, @lisalucier! I’m tagging @jill333 @gloriajean @robinem. I’ve only seen one NS about my M, and he has since discontinued seeing brain patients. I’ll be seeing a new NS in April. I’ll be having a new CAT scan with and without contrast in February or March for that visit to see if the M has grown/changed. I can’t have MRI due to pacemaker. No tingling sensation in forehead or right eye area. Am seeing movement disorder neurologist for myoclonus. She took me off primidone and and put me on propranolol for tremors. So far, so good. Still on keppra until after myoclonus is cleared up, then she’ll wean me off that. I’m not convinced that there’s no connection between the myoclonus and the M, though. Myoclonus symptoms are coming back.

Hi, @cyndymc - I'd like to tag @jill333 @donald1214 @gloriajean @robinem so they can share some of their experiences with meningioma as well as whether they may have had a tingling sensation in the forehead and right eye area.

Is surgery being recommended for you at this time, or is the doctor also thinking watching and waiting is best? Did your neurologist have any medication to offer to alleviate the symptoms?

I have a 1.2 cm meniginoma . I have been having tingling sensation to my forehead and right eye area. I have been told this is pressing on the trigeminal nerve. Does anyone have these symptoms? Trying to find a medication that with relieve these symptoms. I am watching and waiting to see if grows, surgery sounds scary due to location near carotid , brain stem.

@gloriajean, your message about Brain Tumor Awareness week Oct 26 to Nov 2 was shared with all members participating in this discussion and all members following the Brain Tumor group.

Are you doing anything special for brain tumor awareness?

colleen - how can my message be shared with others on this post

FYI: Oct 26 to Nov. 2, 2019 is International Brain Tumour Awareness Week!
Meningionas is the most common brain tumour - 37% of all tumours, benign & malignant are meningioma

I agree that the watch and wait treatment approach can be un-nerving. That's why it is so important to have a good relationship with your doctors and trust in their care and expertise. Personally, I prefer to call watch and wait "active surveillance" which puts the emphasis on watching and that something IS being done.

@donald1214, you can self-refer to Mayo Clinic. The expert leadership spans across all 3 campuses. I invite you to watch these 2 video Q&As with neurosurgeons from FL, AZ and MN campuses to get a feel for the doctors.

– #MayoClinicNeuroChat Live from American Association of Neurological Surgeons Annual Meeting (2018) https://connect.mayoclinic.org/webinar/mayoclinicneurochat-live-from-american-association-of-neurological-surgeons-annual-meeting/
– #MayoClinicNeuroChat on Innovations in Neurosurgery (2017) https://connect.mayoclinic.org/webinar/facebook-live-mayoclinicneurochat-on-innovations-in-neurosurgery/

When you call at any of the 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-hour Access program.

Have you had a second opinion from another doctor? Can you tell me the size of your meningioma? I wonder if your doctor has diagnosed it as benign because of the size that it has gotten to without causing any problems that you know of. When they are benign, they grow very slowly, as I'm sure you already know. However, if it were me, I would feel more comfortable with a second opinion. When I had a recurrence in 2017, I went to two well respected neurosurgeons where I live. They each recommended a slightly different treatment. That's why I called and went to Mayo. One recommended a surgical biopsy on one recurrence and cyber knife on the other which was very elongated. The other doctor recommended gamma knife on both and said no biopsy was needed. I was confused and concerned about what to do. I chose the Rochester office of Mayo even though the FL office was closer because I had read Rochester did gamma knife, cyber knife and proton radiation. I hoped I was a candidate for one of them instead of another craniotomy and it turned out I was.

I went to Mayo on my own. I called them myself and asked for the neurosurgery dept. They gave me an appointment for the very next week and arranged all of my appointments for me. On my first trip there, I saw the director of neuro oncology, a neurosurgeon and a radiation oncologist. Truly a team effort there. I was extremely impressed. If you go to Mayo in Rochester, my neurosurgeon is Terry Burns. He recommended I have gamma knife radiation on my recurrences and did it for me. I like him a lot. I use him now each year to review my annual MRI's. Best wishes. Keep us informed on your progress. Jill

Yesterday saw my doctor Mrugala. Such a neat fellow. We are fighting my tumor with Advastin.