Watching a Meningioma Brain Tumor

Thanks John, as a retired dermatologic surgeon, I know that experience is very important in any procedure. Having to deal with complications, etc. Age (not too young/not too old). Outcomes. It is hard to get this information without directly asking the doctor.

Hi, @alex31,
@jenniferhunter also may have some input on her neurosurgery at Mayo Clinic and may be able to share some of her process for discovering and researching her doctor prior to seeing him.

@alex3l I can say from experience that sometimes the best surgeons at respected facilities can still miss important clues and discredit patients who give them this information when they don't understand it. I came to Mayo Rochester after being turned down by 5 spine surgeons. I clearly had cervical stenosis with spinal cord compression and it caused all kinds of crazy pain all over my body that was reproducible and changed with the direction I turned my head. During that time, I was doing everything I could to learn about my condition. I watched spine surgeons making presentations about their cases at conferences that I found online. I always researched everything I could about a surgeon I wanted to consult and read their papers and research looking to see if their area of interest was a match for me and looked for online videos of the surgeon. That is how I found the conference videos. I looked at where the surgeon trained and got their degrees and if they had been recognized with academic awards or recognized in their field. It was doing that that led me to medical literature about cases like mine and I found what all the surgeons were missing that explained why my case was different, and I sent this literature in with a request to see a particular Mayo surgeon. I knew he would understand this because I found the literature after looking up a term in his paper, "funicular pain" and it gave me the hits on the case literature. I also had the help of a good physical therapist and had a 3 dimensional understanding of how the body works mechanically, and I have a biology degree, so I can understand a lot of what I read. I had worked in university neuroscience research right out of college, and after that, I went to art school and learned to visualize everything and had studied anatomy with the biology and at art school which helped me understand why pain changed in relation to body position. I am pretty intuitive at reading people which helped me gauge the response I was getting at a consultation and I knew enough to know if I was getting good answers and if the surgeon was interested in having me as a patient, and if he had confidence in his ability to help me. I had a list of detailed questions I would ask about surgery and a doctor's specific success record if I got far enough at a consultation, and I would ask how that might apply to me with any other health issues that I may have. I also wanted to know that any surgeon I considered was happy in their life and career. I had read a book called, "Back in Control" written by a spine surgeon that I saw in the online conference videos who also himself became a spine surgery patient and that opened my eyes to how much stress a surgeon can have and that like the rest of the population, stress can lead a person to end their life. I wanted to know that my surgeon loved his job, and I asked others doctors about that who knew him. I chose a surgeon who trained at Mayo in neurosurgery, and also had orthopedic spine training, and who taught both at Mayo's neurosurgery program and at conferences and who also was a deformity expert, who understood using both artificial discs and fusion. He had done brain surgery and there were some media articles about that. With my face to face interview, I knew that he was an expert in his profession and had done thousands of surgeries like mine, answered my questions intelligently and with confidence and he offered to help me. I knew I could trust him. I had great results and just filing out a survey wasn't enough, so I wrote a letter to Mayo's CEO and sent that in with the survey. I got a personal letter back form the CEO telling me how respected my surgeon is at Mayo and that he is one of their best, so my intuition and self referral served me well.

Here are some videos where you can learn a lot from surgeons. For anyone who doesn't want to see actual surgery videos or photos, don't go to the links.

Here are some NREF videos, and if you scroll this page down to the bottom, there are 5 videos about skull base surgeries.
https://www.youtube.com/user/NREFvideos/videos
This is another at Seattle Science Foundation that discusses Meningiomas
https://www.youtube.com/watch?v=b1xER89nil8

I don't know if you would be a candidate, but Mayo also has the Proton beam for treating cancers. They showed this in the Ken Burns documentary on Mayo with the recovery of a toddler with brain cancer. https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/sections/overview/ovc-20185491

I know you are asking about age and experience, and I used to think that way too. A lot of spine surgeons I saw were probably in their 40's. From what I have heard from one of my doctors, surgeons tend to develop back problems from bracing and leaning over the operating tables and they may retire from performing surgery early for this. A younger surgeon will also have more recent training in new techniques. Certainly you want a surgeon with a specialized interest in what you need who does more of these procedures, and there are skull base interests listed in neurosurgeon's profiles. I think Mayo does update doctor profile photos. My surgeon's photo was updated once since I started with him 3 years ago. The profiles have graduation dates for their degrees, etc. I do have a connection with my surgeon, and if you want, I can ask him for his recommendation. You'll want to look at my Mayo patient story.

https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
https://sharing.mayoclinic.org/2012/12/23/repaying-a-gift-scholarship-recipient-says-thanks-in-a-special-way/
https://sharing.mayoclinic.org/2017/07/26/spinal-surgery-saves-teen-swimmers-mobility/
http://www.startribune.com/in-second-term-minnesota-gov-markdayton-dealing-with-more-health-problems/361662931/
http://www.startribune.com/gov-mark-dayton-to-undergo-third-back-surgery/497015811/
https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/specialized-expertise-for-spinal-deformity-surgery/mac-20469055

Thanks,
AL

I still have not found any one with symptoms that I have . I have a Meningioma pressing on trigeminal nerve, causing intense tingling to rt side of face. Any one have this? Any medication that works for you.

Hi @cyndymc,

I merged your post about finding others with Meningioma (pressing on trigeminal nerve), with this previouss discussion so that you could reconnect with the members who joined this conversation.

You might wish to view these discussions where @mrser52 @nancye3 @ccmars have written specifically about meningioma on right trigeminal nerve:
https://connect.mayoclinic.org/discussion/meningioma-brain-tumor-on-right-trigeminal-nerve/
https://connect.mayoclinic.org/discussion/left-frontal-meningioma-surgery-recovery/

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

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?

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

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.