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Watching a Meningioma Brain Tumor

Posted by robinem @robinem, Feb 8, 2018

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?

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hinklda | @hinklda | Aug 1, 2020
In reply to @colleenyoung "Hi @dusktodawnisparkle, I'd like to add my welcome. You'll notice that I moved your message to..." + (show)
@colleenyoung

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?

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I was diagnosed in February. My tumor was near my spinal cord. I have a sister that lives near Salt Lake City so I had surgery and radiation treatments with chemotherapy at the Huntsman Cancer Institute. My suggestion is to get to a cancer hospital for the best treatments! I have to see my neurologist every month and am still taking stronger doses of chemo pills. I am scheduled to have an MRI done every 2months. I'm also seeing a physician therapist to regain my strength.

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pat5 | @pat5 | Aug 5, 2020
In reply to @bobhills "The tumor has doubled in size. Surgery is frightening but often the only real option. Mine..." + (show)
@bobhills

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.

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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

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1 reply
bobhills | @bobhills | Aug 5, 2020
In reply to @pat5 "I had a 10 cm frontal menigioma removed 10 years ago. It was along the middle..." + (show)
@pat5

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

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I had a meningioma removed in December 2019 and have had no sensations in the right side of my face since, this does not seem to be getting any better and in fact sometimes is worse. Anyone had similar issues?

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mwhitejasp | @mwhitejasp | Feb 1, 2023

I was diagnosed in 2020 with a 2cm olfactory groove meningioma. I’ve seen 5 neurosurgeons and they all suggest different approaches. I’m so confused! One surgeon recommends Gamma Knife, another recommends keyhole surgery above my eyebrow, another says ear-to-ear cranial surgery, one recommends nothing but watch and wait, and my current surgeon at UCLA suggests mild radiation therapy to shrink it and possibly surgery through my sinus to remove it. All procedures come with risks. It’s been three years of anxiety not knowing what to do. In the meantime, the ringing in my ears has been debilitating and I’m faced with increasing vertigo and sinus headaches. I’m curious if anyone else has experienced the same challenges and what was your outcome.

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1myhope | @1myhope | Feb 1, 2023

What grade of meningioa are you dealing with? That should help with decision.

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Lindajean | @lindajean | Feb 2, 2023
In reply to @lindajean "Hi, I have been on watch and wait for many years. Diagnosed even younger than you...." + (show)
@lindajean

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!

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A brief update......I just had an MRI and once again, no change in my 2 Meningioma's.......Now 17 years of Watch and Wait with NO needed surgery!!!!! Just wanted to share so others are not so afraid if they are on a watch and wait for years 🙂

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purpleturtle | @purpleturtle | Feb 3, 2023

That it was wonderful news however don't stop getting follow ups. It was 14 years from the time mine was found until the time it had grown large and caused strokes and emergency surgery. I failed to follow up for many years before this happened because I felt fine and assumed I was fine and didn't want to go and have MRIs done.

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ehask | @ehask | Feb 24, 2023
In reply to @robinem "Thanks for your response. It helps to know others are dealing with the same issue. My..." + (show)
@robinem

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...

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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.

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1 reply
pixie49247 | @pixie49247 | May 12, 2023
In reply to @ehask "I am 64 and was diagnosed 13 years ago with meningioma that started gum ball size..." + (show)
@ehask

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.

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I just found out I have a small one on a MRI for something else. I’m getting an appointment with a neurologist. I’m hoping for a wait and watch. Thankfully most are benign. I’m pretty scared right now

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