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?

@gloriajean

Hang in there! I, too, had the same brain tumour as you. It was a diagnosed 5 yrs
ago after having a grand mal seizure (I'd never had epilesy) &.never had any symptoms.
Emergency did a Ct scan & a benign Grade 1 menongioma tumour of 3m size was found. OMG!!!
I was only 64 yrs old & never been sick or had surgery
OMG!
I could not have the surgery the next day – not coping with the news & since I was on my own , decided to go jome & figure things out. Started to "shop around" for the best neurosurgeon in the country as well as the best hospital. I interviewed 3 NS & finally.settled on the one who did the surgery. He was successful in removing the entire tumour without any tendrils breaking thru the membrane protecting my beloved brain!
So, from my experience & learning from so many other survivors of meningioma tumours, get/demand an MRI & shop around for the be NS you can find.
Are you on any meds to prevent seizures – do you have balance provlems?
Also che k the American Brain Tumour Society's website for their excellent resources!
Breathe & take one step at a time!!!
You will make it through this. Our brains are unbelievably tough and bounce back so many times.

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I'm glade you are feeling better, and had a successful surgery! That is awesome news! Prayers are with you that you may remain healthy!
I am not on any medication he ordered an eeg, maybe after that!
I will check out the resources you gave me and hopefully I too can find a dr who will listen and help me get this out of my brain or ease my mind to help me live with it!! Thank you for your advice and your reply

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@gloriajean

Hang in there! I, too, had the same brain tumour as you. It was a diagnosed 5 yrs
ago after having a grand mal seizure (I'd never had epilesy) &.never had any symptoms.
Emergency did a Ct scan & a benign Grade 1 menongioma tumour of 3m size was found. OMG!!!
I was only 64 yrs old & never been sick or had surgery
OMG!
I could not have the surgery the next day – not coping with the news & since I was on my own , decided to go jome & figure things out. Started to "shop around" for the best neurosurgeon in the country as well as the best hospital. I interviewed 3 NS & finally.settled on the one who did the surgery. He was successful in removing the entire tumour without any tendrils breaking thru the membrane protecting my beloved brain!
So, from my experience & learning from so many other survivors of meningioma tumours, get/demand an MRI & shop around for the be NS you can find.
Are you on any meds to prevent seizures – do you have balance provlems?
Also che k the American Brain Tumour Society's website for their excellent resources!
Breathe & take one step at a time!!!
You will make it through this. Our brains are unbelievably tough and bounce back so many times.

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did mu reply go only to the bosslady and mrector wasn't included?

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@mrector

You're welcome. I'm going through the same thing with my back. I just had 4th spinal injection today, first 3 didn't work. Dr's don't seem to take us seriously anymore. We have to be persistent to get answers. You know your body better than anyone so I would definitely get a second opinion.

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Back pain is pretty bad, I understand your pain there! I will keep you in my prayers! Hopefully you get to feeling better soon and some real good pain relief soon. Dr. Don't really listen anymore and I think its bizarre. I am definitely taking everyone's response into consideration and weighing my odds. Thank you for your response. Wish we all could live closer would be good for in person support, but since we can't be, this group is already helping me, not to feel like I'm crazy and all alone. Prayers to you my friend

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Hi, I was diagnosed with 6 tumors in 2010, some large, some small, and some in iffy places. Since then I have had 2 craniotomies, 1 gamma knife, and 1 cyber knife radiation. After the 2 craniotomies, I opted for radiation on the small tumor by my brain stem, the small one on the left very close to my optic nerve, and the left-over mass & bone with tumor pressing on my right optic nerve. In 2010 I was 62 and made the decision to remove as much as possible because of my advancing age:-) My thinking was I'm healthier now:-) then I might be 10 years from now which might make surgery and recovery easier. I opted for the gamma knife and cyberknife in 2012 and 2015 because I didn't want to risk another surgery. Two seemed to be my limit. A lot of talk with husband and family, lots of prayers, advice of my neurosurgeon helped us make this very important decison, however my neuro did suggest a key-hole surgery for the tumor next to my left optic nerve. After much consideration, we decided on the gamma-knife radiation. These are huge decisions and require lots of research, etc. I know more about my brain now than I ever did, and I was able to prove to my husband that I really did have one:-) While this is a tough situation and I don't always feel good, I weigh out my blessings versus my tumors, 1000's of blessings 6 tumors, and try to find the bright side. My license plate reads, fndthfn, Find the Fun, not always easy, but do-able. I wish you all the best, we're walking this road together and as I tell my friends, "Love Will Keep Us Together". Peg

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@kiturah

When I first heard I had a brain tumor, I thought I was the only one. I've learned, meningioma's are very common. Some grow, some don't. Mine unfortunately was pushing against my brainstem and had to be removed. Not all was removed so I continue to have MRI's. I can say I'm no longer claustrophobic!

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Hi. I’m sorry about your diagnosis. Are you symptomatic? Is yours in the foreman magnum? I ask because you mentioned the brainstem. Foreman magnum meningiomas are very rare. I was diagnosed a year and a half ago and the only person I’ve connected to lives in Egypt.
I had a failed craniotomy last June. They got all the way in, but once they reached the tumor, it was deemed too dangerous to even biopsy. It was fully incased in nerves…like a tangled birds nest. Had he tried to get a biopsy, I would have woken up with a feeding tube and the inability to speak or swallow.
I am a professional singer/entertainer and I’m glad my surgeon made the right call. I was treated by a renowned doctor in Los Angeles. We still don’t know if it’s grade 1 or 2 or if it’s anaplastic.
My brother succumbed to anaplastic astrocytoma with glioblastoma just one month before my diagnosis. It is thought that his too started as a meningioma.
It’s been an emotional rollercoaster to ay the very least. My brother and I were very close.
I’m in the process of seeking a 3rd and 4th opinion. The craniotomy was no picnic and mine has since collapsed making the pressure even worse.
I have good days and some very bad days. I’m still working because I believe a body in motion stays in motion…but it’s getting harder. My legs and arms are getting weaker by the day and the pressure is immense. There is a major artery involved in the tumor and I fear stroking out.
I’m a tricky and difficult case. Waiting is torture but the thought of another failed surgery holds me back.
Have they discussed radiation with you?

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@bosslady18769

The dr didn't seem to be concerned and kept repeating that these meningioma are always slow growing and would be decades before I noticed symptoms, however I have never had a seizure before and have only had the 1 so far. The migraines are persistent and these symptoms have only been present for about 3 weeks. Thank you for your reply, I was thinking about going to a neuro oncology doctor just to make sure all the i's are dotted and t's are crossed. Especially because I have other health issues
I pray that you get to feeling well and I will pray for a speedy recovery!! God bless

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Hello @bosslady18769
You mentioned the possibility of getting a second opinion from a neuro-oncologist. Just wondering if you were able to get an appointment yet. Are you still troubled with migraines? How are you feeling otherwise?

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@bosslady18769

I didn't even know I had the seizure until the next day, my husband thought I had one related to medication I was on, I had an MRI in November because I thought I was having symptoms related to ms which runs in my family, balance issues, weakness in my legs and just feeling tired. They found the 6mm meningioma on superior frontal lobe on left side. Since the diagnosis I just didn't want to think about it and go on with life. Then 3 weeks ago I started having headaches and then my husband told me about the seizure. I have also been terribly tired and feeling exhausted. Also I'm forgetful I went to my follow up and dr is going to do an eeg, and in may wants to do an angiogram and repeat MRI. I thought ok I will repeat test and if I'm still uncomfortable with him I will go to Nebraska Medicine which supposedly have good neuro oncology drs. I just worry because of my symptoms now. I feel they are related to the meningioma.

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what did your existing NS say would be his solution to an existing 6
cm meningioma? Did he says it was a benign grade 2 tumour? What meds does he have you on – antiseizure meds??

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@bosslady18769

I didn't even know I had the seizure until the next day, my husband thought I had one related to medication I was on, I had an MRI in November because I thought I was having symptoms related to ms which runs in my family, balance issues, weakness in my legs and just feeling tired. They found the 6mm meningioma on superior frontal lobe on left side. Since the diagnosis I just didn't want to think about it and go on with life. Then 3 weeks ago I started having headaches and then my husband told me about the seizure. I have also been terribly tired and feeling exhausted. Also I'm forgetful I went to my follow up and dr is going to do an eeg, and in may wants to do an angiogram and repeat MRI. I thought ok I will repeat test and if I'm still uncomfortable with him I will go to Nebraska Medicine which supposedly have good neuro oncology drs. I just worry because of my symptoms now. I feel they are related to the meningioma.

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did your NS say why you would have to wait till May for another MRI? His schedule or what reason
?

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@sandra511

Anyone ever try accupuncture for treatment of their meningioma? I am on "watch and wait" and would like to avoid syrgery! I'm 67 years old. I have slight headaches and dizziness. I have ringing in my ears that comes and goes. Worry seems to increase my symptoms. Golfing always helps! Thanks for all of ypur posts. Knowledge is power.

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I've got a watch area where a new tumor is trying to form just a bit below where they took out the 7.2cm one. They want me to go back on double temozolomide and I really don't want to and at 66 I would not like anymore surgery.

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@bjh369

I've got a watch area where a new tumor is trying to form just a bit below where they took out the 7.2cm one. They want me to go back on double temozolomide and I really don't want to and at 66 I would not like anymore surgery.

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Hi @bjh369 Always hard when we get into the waiting and watching times with our medical journeys. Plus the kinds of decisions you are having to make are incredibly difficult ones. All I can say is when my wife was presented with care options she did her best to gather all the input and information she could and then made her personal choice based on her mantra of always opting for the choice she felt was offering the best quality of life for her, even if it wasn't the one that might have meant more quantity.

Best of wishes and strength to you!

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@IndianaScott

Hi @bjh369 Always hard when we get into the waiting and watching times with our medical journeys. Plus the kinds of decisions you are having to make are incredibly difficult ones. All I can say is when my wife was presented with care options she did her best to gather all the input and information she could and then made her personal choice based on her mantra of always opting for the choice she felt was offering the best quality of life for her, even if it wasn't the one that might have meant more quantity.

Best of wishes and strength to you!

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Thank you.

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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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Hello – I had a grade 1 benign meningioma tumour removed over a year ago. It was completely removed & determined to be non-cancerous. It'd diagnozed on Oct. 17 in 2013 as a result of my first & only seizure. The NS waanted to operate within 2 days – I believe more because of the edema – than because of the existing benign tumour. Because of extreme fear of craniotomy & not having any time to figure out & realistically look at all options, I simply let each day go by without commiting to surgery. Just couldnt do it. My NS put me on anti-seisure meds & I just got on with my life. It wasnt until April 2017 that I started to have real problems..MRI was done & the tumour has shrunk 10% in size & its shape changed. So I knew I had to go ahead with the surgery. I will not get into the details – I dont want to add any more to your worry. My reason in replying to you is that you MUST ask your NS about the post surgery outcomes & your quality of life! I didnt not – didnt really know ai should ask those ki ds of questions & my bloody NS never, ever told me about the problems I most likely would happen. My head healed well, the tumour was removed successfully but ….
Do as.much research about after-effects & what will be your quality of life & the provlems you will have. it is such a decision to reach. I wish you well!!!!

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@gloriajean

Hello – I had a grade 1 benign meningioma tumour removed over a year ago. It was completely removed & determined to be non-cancerous. It'd diagnozed on Oct. 17 in 2013 as a result of my first & only seizure. The NS waanted to operate within 2 days – I believe more because of the edema – than because of the existing benign tumour. Because of extreme fear of craniotomy & not having any time to figure out & realistically look at all options, I simply let each day go by without commiting to surgery. Just couldnt do it. My NS put me on anti-seisure meds & I just got on with my life. It wasnt until April 2017 that I started to have real problems..MRI was done & the tumour has shrunk 10% in size & its shape changed. So I knew I had to go ahead with the surgery. I will not get into the details – I dont want to add any more to your worry. My reason in replying to you is that you MUST ask your NS about the post surgery outcomes & your quality of life! I didnt not – didnt really know ai should ask those ki ds of questions & my bloody NS never, ever told me about the problems I most likely would happen. My head healed well, the tumour was removed successfully but ….
Do as.much research about after-effects & what will be your quality of life & the provlems you will have. it is such a decision to reach. I wish you well!!!!

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Thanks for sharing your experience here, @gloriajean I believe it is very important to get a wide variety of views and experiences shared! These things are so different from person to person! Thanks again and I hope things are going OK for you now.

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I am a young 68. I have been on watch and wait for 10 years. Last year it grew, and the surgeon said it needs to come out, but I had parathyroid surgery scheduled. (Now I have Grave's Disease and Thyroid Eye Disease.) This month the MRI showed no change, so the surgeon said we can watch and wait again or I can have it removed. I chose to not have my head cut open this year. If it grows again, the surgeon may tell me now is the time. But at my age? The fun don't done.

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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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