Watching a Meningioma Brain Tumor

I am 64 and was diagnosed 13 years ago with meningioma that started gum ball size and is now golf sized. I have no symptoms. I have been able to become comfortable with active surveillance over the years but was initially very upset and frightened. In my case it has been possible to live a normal life for years after diagnosis.

Thanks for your response. It helps to know others are dealing with the same issue. My family is freaking out, as I am their "person". It doesn't seem fair to them or me to wait and watch, when they have already told me I will need to do something with it. I'm scared to death of the craniotomy surgery, but I guess I would like to get it over and move on with my life hopefully...

Hi, I have been on watch and wait for many years. Diagnosed even younger than you. Dr. Oneil at Mayo explained at my initial workup that since the risk could be high for surgery in my location of left frontal lobe, and because I was not having damaging symptoms, that I may NEVER need surgery....not that I would HAVE to have it down the road, just depended on growth and symptoms that could happen. Many people have meningioma's and never even know they have them. I have become very comfortable with my watch and wait. With the rapid advances in less damaging and more precise techniques every year, I am GLAD I have had 12 or so years of avoiding such a tramatic surgery and know every year of research is a "gift" in my pocket IF IF IF I ever do need to have surgery. It is very scary when first diagnosed, but at least for me, watch and wait is not much different than going in for my routine health checkups...just part of my "new normal"-ha!

I had a 10 cm frontal menigioma removed 10 years ago. It was along the middle cerebral artery, so a small ridge was left. I have had follow up mri’s for 10 years with no new growth. That’s positive. However, it was not until I couldn’t walk or talk anymore that anyone believed me.. I attribute that to being in a pain management program for my back. My leg weakness... just did another epidural or another ablation. My inability to talk, to much pain medication. Sent me to an orthopedic doc for a second opinion... I saw his notes.. he said he couldn’t tell if I was faking or not. I fell down continuously, couldn’t remember anything, was emotional ( all things related to frontal lobe functions were/are impaired) my kids said something was wrong but my husband was in complete denial. I am a RN with a masters degree... so I knew all the buzz words, name of reflex, etc. anyway, finally when I didn’t answer the phone one day (I was 54) my husband came home took me to ED ( my FP just shrugged) did a ct scan , then everything went into motion. I have few memories after this except having 3 more MRI’s that day and having a 14 hour brain surgery two days later. I had a midline shift of my brain. I have had 3 years of intermittent neuro rehab. I lost so much because no one would believe me... I have not worked since, cannot remember anything from last 10 years except vaguely. I have had such a difficult time dealing with all my ‘frontal lobe functions’ losses. We moved 3 times since then so never really found continuity of care, which is important. Thanks for allowing me to share, it makes me upset as I read through these posts that people, people who have symptoms get ‘ well will just watch it’. I understand on many levels the rationale behind this, but please don’t let yourself be compromised like I was completely and irrevocably. You know your body best

The tumor has doubled in size. Surgery is frightening but often the only real option. Mine was benign but large enough that I elected to have it removed even though I had no symptoms. Please find a good neurosurgeon that you can trust and get on with it. When you open your eyes you will be glad that you did.

Hi @dusktodawnisparkle, I'd like to add my welcome. You'll notice that I moved your message to this existing discussion about Watching a Meningioma Brain Tumor. Click VIEW & REPLY to read through past posts.

You might also be interested in reading the posts of members like @robinem @ees1 @cnesselroad and more in these related discussions:
- Meningioma and Cavernoma: Stressed Waiting and Watching https://connect.mayoclinic.org/discussion/meningioma-and-cavernoma/
- Meningioma - I'm scared to watch and wait https://connect.mayoclinic.org/discussion/have-had-a-mri-that-revealed-a-large-structure-that-is-presumed/

Being told that watchful waiting is your treatment option can be stressful. In actual fact, your medical team is not inactive, but rather actively monitoring you. This is likely because the risk of treatment is more dangerous than the possible benefits. I prefer the term “active surveillance” rather than “no effort”.

I'm unclear about one thing in your post. Are you currently experiencing vision issues?