Mayo Clinic Connect
I’ve just been diagnosed with a 2cm meningioma tumor on the right front of my head. I am 59 years old and the surgeon has told me I will need to “do something” with my tumor someday since I am younger. What is the benefit of waiting?
Liked by Scott, Volunteer Mentor, EES1, gloriajean
Thank you. And you. It’s an awful road. Just got back from Mayo. Dr. was excellent, kind, just wonderful. No change in two years. Been there a very long time. Just hoping it stays put.
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Did you go to Mayo on your own or were you referred? I’m considering going on my own.
Yesterday saw my doctor Mrugala. Such a neat fellow. We are fighting my tumor with Advastin.
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
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 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.
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
Liked by Colleen Young, Connect Director, Lindajean
colleen – how can my message be shared with others on this post
@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?
Hi @mrector, welcome to Connect. It takes time to heal after surgery. However, I would hope that some of the pain in your jaw would start to subside. Have you talked to your surgeon about it? It would also be good to mention it at your upcoming appointment with the neuro-opthamologist.
You may also be interested in this discussion on Connect:
– Optic Nerve Meningioma patients https://connect.mayoclinic.org/discussion/optic-nerve-meningioma-patients/
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.
Liked by Teresa, Volunteer Mentor
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?
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.
Liked by Lisa Lucier
I also have a meningioma that is 2.4 cm since last scan in October. I am having the same symptoms as you but also balance problems and numbness in feet. Doctor recommended Gabapentin but don't want to take it. My NS says the tingling numbness in forehead, eye and now lip is not connected to the meningioma. He is suggesting the watch and wait, too. I have another MRI in January. Good luck to you.
I have been diagnosed in 2018 with meningioma 12 mm on my right front brain. They gave me antibiotics for 10 days. I had again a MRI 3 months ago and was told that this meningioma is now 8 mm but I have an other one below of 4 mm. They advise me to wait and see. I don't have any motor sign but losing some of my vision. Do I have to wait?
Hello, @ginette55 – welcome to Mayo Clinic Connect. I'd wonder, too, if I were watching and waiting with 2 meningiomas and I started losing vision.
If like to tag @deblee @cyndymc @donald1214 @robinem to provide some support and any input they may have at this time about continuing to watch and wait with the vision loss you've experienced
Have you had the opportunity to talk with your doctor about the changes in your vision? If so, what did he or she say?
Not yet. But I am expecting a new appointment.
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