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?

@bjh369

Man I don't blame you for not wanting your head opened back up. I am a young 66 year old just starting the wait and watch game. I had emergency surgery Sept 27th, 2018. Did 6 weeks of radiation and 6 weeks of tremozolomide. Right now everything looks good even looks like it's backing off a little. I'm doing old Chinese medicine and therapeutic doses of vitamin C IV drip every other week. I will pray yours backs off for good.

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The Olfactory Groove Meningioma is 1.0 x 2.7 x 2.5 cm in the crainiocaudal, anteroposterior and transverse dimensions (?). Plenum sphenoidale.

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I have a tumor above my left eye. It grew from 1cc to 2 cc in 6 months. My neurosurgeon gave me 3 options- wait, surgery or gamma ray knife surgery. I chose the gamma. He said there is a 96% chance it will stop it from growing. I will have my 6 month MRI on June 25 and will find out on July 9 if it worked. I do have tentacles that they might have to zap but I would do the gamma if it was an option. All you do is wear a helmet. It sounds awful as they screw the helmet into your head but they give you lidocaine it is not bad. Then after an MRI you go into the gamma machine and they use lasers to zap the tumor. There is very little discomfort. I will let you know if it worked. Ask your doc if it's an option

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Good info to know. Thanks.

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@colleenyoung

Robin, you asked “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? That is an excellent question. Like Scott says, every person’s situation is different. My understanding is watch and wait is recommended when the risk of growth is lower than the risk and/or side effects of treatment. That is a dreadful over simplification. It is better explained here: https://www.braintumour.ca/5833/ask-the-expert-the-wait-and-see-approach

We have several members living with meningioma who have had treatment and others who are under “active surviellance” (my preferred term to watch and wait). Let me bring a few more members into this discussion @eleanor1931seminara1931 @pegorr @lindajean @barbarabx @nancye3 @cnesselroad.

If I were you, I’d ask the surgeon to explain more specifically about the position and rate of growth that may lead to needing surgery later. And if surgery is inevitable, why not sooner?

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Colleen
I am new to the connect mayoclinic group discussion here and I am from Canada
I was diagnosed 12 years ago when I was 41 with a right side parasaginal meningioma that when found was about 2cm however I was symptomatic
I was told to watch and wait and did so for about 6 months but I had little quality of life and was experiencing personality changes
I got angry one day and turned to the web to answer my growing number of questions and fell upon the mayo clinic site
I actually called directly and asked to speak to a Neurologist or Neuro surgeon. My phone number was taken and within a few hours I was called back. Unfortunately I do not remember the name of the neurologist who returned my call but I will be forever grateful
He listened and asked questions and then advised me that if I was uncomfortable with what my Neuro surgeon had suggested to “ watch and wait” then I had every right to ask for a second opinion. He even supplied me the names of three Neuro Surgeons from my hospital here in Canada that I could call and get that second opinion from
I thanked him hung up and made my first call to Dr Hall at the Montreal Neurological Hospital. He took me seriously confirmed I was symptomatic and fast tracked me to surgery
After 7.5 hours of surgery a 6.2 cm (yes it had grown rapidly) grade I tumour was removed that had begun to attach itself to the falix the main artery of the brain which had I continued to “watch and wait” would have made the tumour inoperable
I am forever grateful for the day I finally got angry and landed upon your institution and who provided me sound medical guidance because I am here to talk about it and lived to see my grand daughter come into my world
If a patient is not comfortable with the “watch and wait” approach they should know and be encouraged to get a second opinion this is your life not anyone else’s

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@angela66

Colleen
I am new to the connect mayoclinic group discussion here and I am from Canada
I was diagnosed 12 years ago when I was 41 with a right side parasaginal meningioma that when found was about 2cm however I was symptomatic
I was told to watch and wait and did so for about 6 months but I had little quality of life and was experiencing personality changes
I got angry one day and turned to the web to answer my growing number of questions and fell upon the mayo clinic site
I actually called directly and asked to speak to a Neurologist or Neuro surgeon. My phone number was taken and within a few hours I was called back. Unfortunately I do not remember the name of the neurologist who returned my call but I will be forever grateful
He listened and asked questions and then advised me that if I was uncomfortable with what my Neuro surgeon had suggested to “ watch and wait” then I had every right to ask for a second opinion. He even supplied me the names of three Neuro Surgeons from my hospital here in Canada that I could call and get that second opinion from
I thanked him hung up and made my first call to Dr Hall at the Montreal Neurological Hospital. He took me seriously confirmed I was symptomatic and fast tracked me to surgery
After 7.5 hours of surgery a 6.2 cm (yes it had grown rapidly) grade I tumour was removed that had begun to attach itself to the falix the main artery of the brain which had I continued to “watch and wait” would have made the tumour inoperable
I am forever grateful for the day I finally got angry and landed upon your institution and who provided me sound medical guidance because I am here to talk about it and lived to see my grand daughter come into my world
If a patient is not comfortable with the “watch and wait” approach they should know and be encouraged to get a second opinion this is your life not anyone else’s

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I have a 3.1 cm frontal convexity menginoma with exerting mass effect! I have terrible pressure in my head my arms and legs are week i have ringing in my ears! Head continuous! I go back Sept 18th hoping he will take it out! I am miserable! Depression anxiety and panic attacks! Im scared of the surgery though! But tired of feeling like this!

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@angela66

Colleen
I am new to the connect mayoclinic group discussion here and I am from Canada
I was diagnosed 12 years ago when I was 41 with a right side parasaginal meningioma that when found was about 2cm however I was symptomatic
I was told to watch and wait and did so for about 6 months but I had little quality of life and was experiencing personality changes
I got angry one day and turned to the web to answer my growing number of questions and fell upon the mayo clinic site
I actually called directly and asked to speak to a Neurologist or Neuro surgeon. My phone number was taken and within a few hours I was called back. Unfortunately I do not remember the name of the neurologist who returned my call but I will be forever grateful
He listened and asked questions and then advised me that if I was uncomfortable with what my Neuro surgeon had suggested to “ watch and wait” then I had every right to ask for a second opinion. He even supplied me the names of three Neuro Surgeons from my hospital here in Canada that I could call and get that second opinion from
I thanked him hung up and made my first call to Dr Hall at the Montreal Neurological Hospital. He took me seriously confirmed I was symptomatic and fast tracked me to surgery
After 7.5 hours of surgery a 6.2 cm (yes it had grown rapidly) grade I tumour was removed that had begun to attach itself to the falix the main artery of the brain which had I continued to “watch and wait” would have made the tumour inoperable
I am forever grateful for the day I finally got angry and landed upon your institution and who provided me sound medical guidance because I am here to talk about it and lived to see my grand daughter come into my world
If a patient is not comfortable with the “watch and wait” approach they should know and be encouraged to get a second opinion this is your life not anyone else’s

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Hi @angela66, welcome to Mayo Clinic Connect. What an amazing story. While you don't know that name of the Mayo neurosurgeon who kindly helped you get a second opinion in your home country, I will share your story with the department to show the impact of going above and beyond. Watch and wait can be the right course of treatment. In your case, your instincts were right. It was time for action and thank goodness you took it. How old is your granddaughter now? Did you have any treatment after surgery?

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@colleenyoung

Hi @angela66, welcome to Mayo Clinic Connect. What an amazing story. While you don't know that name of the Mayo neurosurgeon who kindly helped you get a second opinion in your home country, I will share your story with the department to show the impact of going above and beyond. Watch and wait can be the right course of treatment. In your case, your instincts were right. It was time for action and thank goodness you took it. How old is your granddaughter now? Did you have any treatment after surgery?

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Hello Colleen
My grand daughter is almost 4 the light of my life
As for treatment not directly but have had three laser surgeries in each eye due to early onset of glaucoma caused by the inflammation and pressure of the tumour when it was present
Additionally a few follow up appointments with Neuro psychology for memory issues and spatial issues also as a result of the tumour when it was present but otherwise no other treatment. I go every two years for a MRI follow up and so far all’s clear
Very thankful and grateful and will forever be grateful for the call I made to Mayo Clinic and the advice I was given

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@tonj657716

I have a 3.1 cm frontal convexity menginoma with exerting mass effect! I have terrible pressure in my head my arms and legs are week i have ringing in my ears! Head continuous! I go back Sept 18th hoping he will take it out! I am miserable! Depression anxiety and panic attacks! Im scared of the surgery though! But tired of feeling like this!

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@tonj657716, I can imagine that you feel miserable. When you go for your consult on Sept 18, let your doctor know that you're scared and that you've been suffering from depression, anxiety and panic attacks. Your team can help you get the support you need to see this through. You're not alone. Perhaps @mrector @kmart and @pegorr can share some of their experiences with you.

While we wait for others to join the conversation, You might like to read this conversation.
– Life: How do you not let a brain tumor take over your life? https://connect.mayoclinic.org/discussion/life/

Is your upcoming appointment a consult for surgery?

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@colleenyoung

@tonj657716, I can imagine that you feel miserable. When you go for your consult on Sept 18, let your doctor know that you're scared and that you've been suffering from depression, anxiety and panic attacks. Your team can help you get the support you need to see this through. You're not alone. Perhaps @mrector @kmart and @pegorr can share some of their experiences with you.

While we wait for others to join the conversation, You might like to read this conversation.
– Life: How do you not let a brain tumor take over your life? https://connect.mayoclinic.org/discussion/life/

Is your upcoming appointment a consult for surgery?

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To discuss it he said before he would strongly consider surgery to remove it, i had nodules in my medistinal that i had surgery to remove planned so he wanted me to get through that and healed up first! So i believe he wants to remove it! I hope so i want to feel good again!

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I’m reading through these comments since I’ve been diagnosed with a benign right frontal lobe meningioma. They say that from two different CTs that the tumor has been there some 20 years judging by the calcification formed around parts of it. I can’t have an MRI due to my pacemaker, so that eliminates closer examination. My neurosurgeon recommends the wait and see mainly because the tumor has been there so long. It was found accidentally while searching for a reason for severe jerking of my body all of a sudden, then continued episodes of one part of my body or another. This, along with a “full” feeling in my head and mild headaches. Finally diagnosed with myoclonus, but still no source of where it’s coming from. Hence, the brain CT and discovery of the tumor. The wait and see has me pretty jittery because it doesn’t make sense that there’s something taking up space in my skull that shouldn’t be there and why shouldn’t it be removed. Just sign me “waiting “

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Benign left frontal convexity/parasagittal here. Wait and watch. It’s unnerving. Calcified, also.

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@ees1

Benign left frontal convexity/parasagittal here. Wait and watch. It’s unnerving. Calcified, also.

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Bless you.

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Thank you. And you. It’s an awful road. Just got back from Mayo. Dr. was excellent, kind, just wonderful. No change in two years. Been there a very long time. Just hoping it stays put.

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@donald1214

I’m reading through these comments since I’ve been diagnosed with a benign right frontal lobe meningioma. They say that from two different CTs that the tumor has been there some 20 years judging by the calcification formed around parts of it. I can’t have an MRI due to my pacemaker, so that eliminates closer examination. My neurosurgeon recommends the wait and see mainly because the tumor has been there so long. It was found accidentally while searching for a reason for severe jerking of my body all of a sudden, then continued episodes of one part of my body or another. This, along with a “full” feeling in my head and mild headaches. Finally diagnosed with myoclonus, but still no source of where it’s coming from. Hence, the brain CT and discovery of the tumor. The wait and see has me pretty jittery because it doesn’t make sense that there’s something taking up space in my skull that shouldn’t be there and why shouldn’t it be removed. Just sign me “waiting “

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I had a right frontal lobe meningioma in 2001. Because of the size of mine (5cm, about the size of a small orange) I was also told that it had probably been there for at least 20 years. I found out about mine by having a grand mal seizure out of the blue. Because it caused a seizure and because there was no way to know if it was benign without surgery, I had mine surgically removed. Fortunately it was benign. I had two small recurrences in 2017 and had gamma knife radiation on them at Mayo in Rochester. How did your doctor know it was benign? Did you have a surgical biopsy?

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@jill333

I had a right frontal lobe meningioma in 2001. Because of the size of mine (5cm, about the size of a small orange) I was also told that it had probably been there for at least 20 years. I found out about mine by having a grand mal seizure out of the blue. Because it caused a seizure and because there was no way to know if it was benign without surgery, I had mine surgically removed. Fortunately it was benign. I had two small recurrences in 2017 and had gamma knife radiation on them at Mayo in Rochester. How did your doctor know it was benign? Did you have a surgical biopsy?

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No biopsy and none was recommended. That’s kind of why I’m still uncomfortable of the diagnosis and the wait and watch. I’ve also been diagnosed with myoclonus that the neurosurgeon says has no connection. And also a nodule on adrenal gland, which I’m having tests run on as we speak. Seems awfully coincidental that all this crops up at once. That’s why I’m considering going to Mayo.

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