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?

@fiddlinchuck

Robin, very sorry to hear of your situation. In May 2018, at age 67, after having 3 seizures during the preceding 6 months, I was diagnosed with a 6 cm meningioma in my right forehead area. It was described as being the size of a tangerine! I was immediately referred to a neurosurgeon and not offered the “wait and see” option. I was very fortunate to not have had other symptoms, which I was told could be significant and some could be possibly be irreversible. Surgery was scheduled for and occurred in August 2018 at Oregon Health Sciences University (OHSU) in Portland, OR. While everyone is different, based on my experience, I would not dread the craniotomy surgery if I had to do it again. I had an excellent surgical team, an experienced neurosurgeon, and terrific post surgery care, things I would research a lot if I had to do it again. I should think that the Mayo Clinic would be a great choice, as was OHSU for me. Having the surgery was helpful to me to get that thing out of my head and not have to worry about it anymore, although unfortunately, a small part that was closely associated with my right optical nerve, was left in place so as to not compromise vision in that eye, a decision by the surgical team for which I am grateful. That has placed me into a “wait and see” situation to see if the remnant stars growing again. Successive MRI’s since surgery have shown it to be stable, which is great. My thought for you is, if the surgery becomes recommended, be strong, do your research in choosing your surgeon and hospital facility, and get it done. I understand the fears you face, as I faced them, too, but it could be worse by not doing anything when/if your doctors recommend removal. I wish you the very best.

Jump to this post

Good reply, Fidd. I had pretty much the same situation as yourself, had the surgery in December and have played 5 rounds of golf recently. Life is good.

REPLY
@lisalucier

How are you feeling lately @bobhills?

Jump to this post

I am hitting my drives straight, my irons fairly well, but my putting is awful

REPLY
@dusktodawnisparkle

I was diagnosed with this tumor in January. It's being monitored as of now. Has anyone been diagnosed with one maybe similar to this..I'll just write my docs notes and should I be worried…because it seems not to be a big deal…a watch and wait thing..here's what was found..meningioma of the sphenoid alley in front of the optic chiasm on the right under frontal lobe.. has fairly large vessels in the tumor itself. It measures 2.5 x 2.0 x 1.6 cm. It does not appear to be compressing..there is contact of the. Optic chiasm but does not appear to be compressing it. It may be growing down and around the optic strut and optic foramen.. ok..so what do I do with that. I'm told not to worry but that's messing with my vision.

Jump to this post

Hello @dusktodawnisparkle, and welcome to Mayo Clinic Connect. You’ve come to the right place to talk with people who have similar experiences and to get support from members who understand what you are going through. Thank you for sharing the details of your diagnosis of a meningioma brain tumor—a great question around your vision.

Are you having any symptoms? If you are okay with sharing, what was happening that made you want to have yourself seen back in January?

REPLY
@dusktodawnisparkle

I was diagnosed with this tumor in January. It's being monitored as of now. Has anyone been diagnosed with one maybe similar to this..I'll just write my docs notes and should I be worried…because it seems not to be a big deal…a watch and wait thing..here's what was found..meningioma of the sphenoid alley in front of the optic chiasm on the right under frontal lobe.. has fairly large vessels in the tumor itself. It measures 2.5 x 2.0 x 1.6 cm. It does not appear to be compressing..there is contact of the. Optic chiasm but does not appear to be compressing it. It may be growing down and around the optic strut and optic foramen.. ok..so what do I do with that. I'm told not to worry but that's messing with my vision.

Jump to this post

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.

REPLY

I was diagnosed with this tumor in January. It's being monitored as of now. Has anyone been diagnosed with one maybe similar to this..I'll just write my docs notes and should I be worried…because it seems not to be a big deal…a watch and wait thing..here's what was found..meningioma of the sphenoid alley in front of the optic chiasm on the right under frontal lobe.. has fairly large vessels in the tumor itself. It measures 2.5 x 2.0 x 1.6 cm. It does not appear to be compressing..there is contact of the. Optic chiasm but does not appear to be compressing it. It may be growing down and around the optic strut and optic foramen.. ok..so what do I do with that. I'm told not to worry but that's messing with my vision.

REPLY
@dusktodawnisparkle

I was diagnosed with this tumor in January. It's being monitored as of now. Has anyone been diagnosed with one maybe similar to this..I'll just write my docs notes and should I be worried…because it seems not to be a big deal…a watch and wait thing..here's what was found..meningioma of the sphenoid alley in front of the optic chiasm on the right under frontal lobe.. has fairly large vessels in the tumor itself. It measures 2.5 x 2.0 x 1.6 cm. It does not appear to be compressing..there is contact of the. Optic chiasm but does not appear to be compressing it. It may be growing down and around the optic strut and optic foramen.. ok..so what do I do with that. I'm told not to worry but that's messing with my vision.

Jump to this post

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?

REPLY
@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?

Jump to this post

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…

REPLY
@dusktodawnisparkle

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…

Jump to this post

That got really long. I'm so sorry. Just very aggravated today. I keep seeing like a …I dont know how to describe…its like something is in my right eye..but theres not..I had 20/20 vision a year ago…and now my right eye is 25 I think…so it's not bad. but I can tell it's worse in the last 3 months..just worries me ..i dont want to lose my sight. And I have bad mood swings…dont know what that's from..for a good year now.

REPLY
@marcyprof

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.

Jump to this post

Marcy prof… I just joined Connect. I’m 54 and I’m in the Very beginning stages of testing for a brain tumor above my right eye. There’s much more going on (that causes pain and loss of bone) as my skull is no longer holding my brain in place. I haven’t even found a specialist yet. (New insurance – but luckily… a PPO.)
Anyway – my question- What do you do for pain? (And can you still drive?). I will be seeing a naturopath as soon as I can.
I’ve been spending most of my days lying down with ice packs around my head. I’ve had headaches the past couple months… but progressed quickly in the last few weeks to almost unbearable. (Very close to a blinding Migraine- but not yet crossing that ‘line’).

I know I will have a Billion questions in time. But I’m just grasping the fact that I need to tell… my children. (I think the rest of my family is strong enough to handle the news. Not worried about them. And my parents will probably just forget all about it the next day.)

REPLY
@dusktodawnisparkle

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…

Jump to this post

I’m so sorry you are going through all of that! I feel your pain. I have a full spinal fusion with rods. I’m permanently bent over forward. I haven’t been able to walk more than a block for the past decade.
I have been trying to get disability since 2006. Even went to my Rep and Senator! They couldn’t help! The problem is too many who don’t need it, are stealing it! And there is no money left.
There are disabled veterans in wheelchairs who can’t even get it! (It’s Illinois- Where 60% of disability checks are sent out of state!)

REPLY
@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?

Jump to this post

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.

REPLY
@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.

Jump to this post

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

Liked by Lindajean

REPLY
@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

Jump to this post

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?

REPLY
Please login or register to post a reply.