Watching a Meningioma Brain Tumor

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?

Hey how are you doing? Thank you for responding. And yes I was a little unlear about the vision. They had told me nothing to worry at that very moment. I was like well...that's my vision your actively monitoring...like dont mess around. I want to always be able to see my beautiful daughter. But the answer to your question is yes...some...on some days my right eye will go blurry...I mainly notice when I'm up and around..just messing around online in the morning..my opthamalogist says the tumor is making contact with the optic chiasm..let's come back in 3 months...well it's been right at 3 months. My left eye is clear when I cover my right eye. When I switch totally blurry...if I had to rely on that eye to read it wouldn't happen..I noticed today my reading glasses didnt really help either. It did 3 months ago..the neurologist says could be an age thing ..could be the tumor...if one more person. Tells me anything with this tumor could be agreed related instead I'll cry. I turned 51 today. I have trouble concentrating really bad the last 2 years. What brought me to get the MRI IS HEADACHES...bad...I hit my head 2 years ago....so hard..on my shed wall coming off of a step and lost balance. Messed my neck up real good...I was shimmy feeling for 3 days...didnt go to hospital...kept on truckin... probably not a good thing to have done..anyhow...I'll let ya catch up..but from that I have a reverse curve in neck going on ...ddd..neuropathy...raynauds ..fibromyalgia. ddd in lower lumbar with compression fractures..oh and carpal tunnel syndrome. I probably forgot something. Lol..but all these things have came about it seems since I hit my head. I know some is age related of course. My Pcp says I just rushed things along when I hit my head. I drives me nuts to sit stand lay down..I'm just all over some days..filled for disability..denied 3 times..just got denied by appeals council. My lawyer was worthless. They didnt know about the tumor. Been seeing docs for 2 years trying to find out what is causing headaches...then they found tumor right after my hearing...

Hello @dusktodawnisparkle, I'm sorry to hear about your diagnosis. A brain tumor is never good news. I myself have a Glioblastoma diagnosed in the fall of 2018 located behind the optic chiasm. It is an aggressive tumor with a diagnosis of impending death. I tell you this because, despite what the doctors say, I am still alive (very much alive) and to this day, I have not lost any cognitive function or vision problem. (After my chemotherapy treatments, I happened to have a few short episodes of visual epilepsy. It lasted a few minutes (10 minutes). It doesn't hurt. It's just strange because part of the vision changes during the seizure but then returns to normal.
I like to think positively, (it helps me get through the disease) so, with each visual epileptic attack, I told myself that it was a sign, a good sign that my chemotherapy was working. I have learned in recent months that current medicine does not know much about brain tumors, so be skeptical, especially about the bad news. Your body is resourceful and it wants to heal. I don't know much about meningiomas, but I do the ketogenic diet, and I take certain dietary supplements (ask a certified naturopath) that control tumor growth. I now live with this tumor as if it was of a chronic disease and I try to do everything not to feed it (a bit like a plant that we do not water so that it does not grow). It seems to work pretty well. For the moment, my tumor remains quiet and does not grow.
Hope this can help you, good luck and most of all, keep your spirits up because it helps you and your brain fight this meningioma.

Hey how are you doing? Thank you for responding. And yes I was a little unlear about the vision. They had told me nothing to worry at that very moment. I was like well...that's my vision your actively monitoring...like dont mess around. I want to always be able to see my beautiful daughter. But the answer to your question is yes...some...on some days my right eye will go blurry...I mainly notice when I'm up and around..just messing around online in the morning..my opthamalogist says the tumor is making contact with the optic chiasm..let's come back in 3 months...well it's been right at 3 months. My left eye is clear when I cover my right eye. When I switch totally blurry...if I had to rely on that eye to read it wouldn't happen..I noticed today my reading glasses didnt really help either. It did 3 months ago..the neurologist says could be an age thing ..could be the tumor...if one more person. Tells me anything with this tumor could be agreed related instead I'll cry. I turned 51 today. I have trouble concentrating really bad the last 2 years. What brought me to get the MRI IS HEADACHES...bad...I hit my head 2 years ago....so hard..on my shed wall coming off of a step and lost balance. Messed my neck up real good...I was shimmy feeling for 3 days...didnt go to hospital...kept on truckin... probably not a good thing to have done..anyhow...I'll let ya catch up..but from that I have a reverse curve in neck going on ...ddd..neuropathy...raynauds ..fibromyalgia. ddd in lower lumbar with compression fractures..oh and carpal tunnel syndrome. I probably forgot something. Lol..but all these things have came about it seems since I hit my head. I know some is age related of course. My Pcp says I just rushed things along when I hit my head. I drives me nuts to sit stand lay down..I'm just all over some days..filled for disability..denied 3 times..just got denied by appeals council. My lawyer was worthless. They didnt know about the tumor. Been seeing docs for 2 years trying to find out what is causing headaches...then they found tumor right after my hearing...

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?