Watching a Meningioma Brain Tumor

Hello @wendyah, welcome to Connect. You may notice that I moved your discussion and combined with a discussion titled, "Watching a meningioma brain tumor." I did this so that you would be introduced to the members discussion meningioma tumors, some of which are in a similar situation as you and your husband. While the members may or may not know of a in-person support group near Cocoa Beach, Florida, I think you will find the supportive nature here on Connect welcoming as well. There is also a Caregivers, group that has many thoughtful members discussing the difficulties of being in situations much like yourself, https://connect.mayoclinic.org/group/caregivers/.

@wendyah, are there any specific questions you would like to ask the members discussing meningioma?

I have had one meningioma removed and one is still in place. The one removed was on the left side with numerous tendrils growing outward. The tumor was near the frontal lobe area. My surgery was in 2009 and the tumor was larger than expected and not all of the extensions could be removed. Almost from the time of recovery I had pains in my head that weren't headaches. Neurologist couldn't find any cause. I began to lose my long term memory and then my short term memory. Things got so bad that I began to think I had dementia or alzheimer's. After many tests and MRIs I learned I didn't have dementia or alzheimer's. I had mild cognitive impairment which basically means that I no longer have the executive functions of my brain. I can't organize things any more. I can only do one thing at a time and any interruption will cause me to totally forget what I was doing, why I was doing it and where I was doing it. When that happens I have to stop everything and try to piece together the details and start again. Sometimes I can and sometimes I can't. I have to use my gps to go every where even if I have been there a thousand times. I can no longer read a book, after a few paragraphs I can't remember what I've read and have to start all over. For someone who could read three or four books at one time, that has been hard to accept. I can no longer work.

The neurosurgeon said we could wait and see on the second tumor, it is small and hasn't grown in five years. He said that if it started to grow he could use lasers to remove it instead of the major surgery I went through.I now have titanium rods holding my skull together. It was a fluke that the first one was found. I feel and hit my head and knocked myself out. I went to the ER just to be sure I hadn't broken any bones around my left eye. Xrays showed the large tumor. The rest is history.

At 2mm your tumor is very small. I would make sure that you are seen once a year and an MRI done to check the status. If it starts growing insist that it be removed using the least invasive procedure. Wishing you the best.

Thank you I appreciate that. Is it dangerous to fly long distances (sixteen hours) with this kind of tumor?

I don't think you have anything to worry about with flying. This type is a very slow growing tumor. Chances are you have had yours for years and it was never noticed. If you are concerned, call your doctor and ask about flying. I'm sure he/she will be able to put your fears to rest. At the time mine was found I had flown across country and a couple of other trips within the US. I had no symptoms and when it was finally found, the doctor told me that just a little bit longer and I would have had a stroke. It was nearly the size of your fist.

I have flown all over the world with my 2 left frontal lobe tumors. I live in Hawaii and have a daughter and her family who live in London....so every time I visit them I am basically going halfway around the world. We used to travel a LOT and I never had any problem nor noticed any growth at my next scans. @wendyah

Thank you. That makes me feel better 🙂

Thank you. My husband has the tumor, but I am the researcher!

Hi I've been recently diagnosed with a 2cm meningioma in the Falx and parasagittal regions. Neurosurgeon wants to wait and watch. I was seeing a Dr for newly acquired migraines. This was a new Dr and decided an MRI but not expecting anything. Neurosurgeon says he doesn't think the meniginoma is causing my migraines. I'm just at a loss!

@robinem I was diagnosed early last September with a 2 cm meningioma on the front just left of center up against the big center vein (I can't remember the name of it). I am 63. My doctor said I could have it removed, but the risk of it being attached to that vein is pretty good and can complicate removal. I went for a second opinion to another neurosurgeon and a third opinion from a Neurologist that treats brain tumor patients and both of them agreed with the first doctor. I started with MRI's every 90 days and then every six months. The tumor has grown only 2mm, with room for error of 1mm. They are not concerned at this point. Friday I had my 4th MRI and will meet with my Dr. Thursday for results. Most of the time I just live like it isn't there. I too went in originally because of headaches, but turns out my headache in the middle of the night was caffeine withdrawal. (I quit Mt. Dew and the headaches quit). The only other symptom is I see auras. They last a few minutes when they come, which isn't often. So I guess I can live with it. I think my biggest concern is not knowing 100% if it is cancerous. The shape is like a grape with a tail, but no tendrils at this point so they are almost positive at this point it is not cancer. Having them go in through my skull scares me to death so I am ok with the watch and wait. I have read a lot on it and I guess it's a very common approach.

Hi, @kkenn, and welcome to Mayo Clinic Connect.

You may be interested in this Mayo Clinic information on meningioma: https://www.mayoclinic.org/diseases-conditions/meningioma/symptoms-causes/syc-20355643.

You mentioned that after sending you for an MRI, the doctor you saw about newly acquired migraines did not think your migraines were caused by the meningioma in the falx and parasagittal regions with which you were recently diagnosed. Hoping that some of the other members in this discussion might have some thoughts about the migraines and also may have some insights for you as someone who is newly diagnosed with a meningioma. Please meet @robinem @cindyt63 @sandra511@wendyah @wkindel and others.

Did your doctor talk about what might be causing the migraines, @kkenn?