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?

@cyndymc

The benefit of waiting is , I am told this may never grow, and brain surgery has many risks.

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I am on the watch and wait regimen also. Incidental discovery when they were ruling out tumors for tinnitus. No symptoms. It’s been a year and a half. Having my third MRI soon. No change from first to second. My meningioma is a left side convexity 3cm x 2cm x 1 1/2 cm. I saw a neurosurgeon recommended by my primary care physician. I went back to my PCP and asked if there was anyway I could get a Mayo consult. My hospital has an agreement with the Mayo Clinic so she was able to get me a free consult. She did all the leg work. Their interpretation was the same as my neurosurgeon. Since no symptoms and so far not growing wait and watch. I could have it removed because it is an easy removal spot but my PCP said it’s brain surgery so don’t do it if you don't have to. I’m 67 years old. There are new technology medical treatments being used and perfected every year. This is why waiting can be good if you aren’t having symptoms. I hope I won’t need surgery.

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@sanderjakidd

I am on the watch and wait regimen also. Incidental discovery when they were ruling out tumors for tinnitus. No symptoms. It’s been a year and a half. Having my third MRI soon. No change from first to second. My meningioma is a left side convexity 3cm x 2cm x 1 1/2 cm. I saw a neurosurgeon recommended by my primary care physician. I went back to my PCP and asked if there was anyway I could get a Mayo consult. My hospital has an agreement with the Mayo Clinic so she was able to get me a free consult. She did all the leg work. Their interpretation was the same as my neurosurgeon. Since no symptoms and so far not growing wait and watch. I could have it removed because it is an easy removal spot but my PCP said it’s brain surgery so don’t do it if you don't have to. I’m 67 years old. There are new technology medical treatments being used and perfected every year. This is why waiting can be good if you aren’t having symptoms. I hope I won’t need surgery.

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Hi I am having symptoms but I would not have surgery unless things were a lot worse. Some days can be difficult.

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@cyndymc

Hi I am having symptoms but I would not have surgery unless things were a lot worse. Some days can be difficult.

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I had surgery on October 24th I am starting to feel better! For me surgery was what was recommended because of size and location! I wish you luck in whatever you choose! I feel better no headaches my arm and shoulder and leg pain is better pretty much all my problems are getting better!:

Liked by Lisa Lucier

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@deblee

They are not sure but the NS sent me to an ENT who could also not find a cause, I have a full spine and another brain MRI on Friday, so we shall see if anything has changed and maybe will have an answer. I feel as you that if I can live with the symptoms right now, it would be better than the risks of surgery.

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How did the full spine and brain MRI go, @deblee?

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@cyndymc

Hi I am having symptoms but I would not have surgery unless things were a lot worse. Some days can be difficult.

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I would wait if your meningioma is not growing. My PCP said there is so much risk with any type of brain surgery. If I start having symptoms I am sure it would be a big decision. About a month ago my husband asked me if I wanted to have surgery if I was unable to make the decision (incapacitated) and I was having symptoms. I said yes.

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@lisalucier

How did the full spine and brain MRI go, @deblee?

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They could only do the brain and partial spine since techs were late getting me into machine, and doctors were waiting to see me. I will be finishing the spine scan on Monday and follow-up again with my doctors. Thank goodness the brain showed no growth since October. Also, my NS and NO scheduled me to see a neurologist at the end of this month.

Liked by Lisa Lucier

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@sanderjakidd

I am on the watch and wait regimen also. Incidental discovery when they were ruling out tumors for tinnitus. No symptoms. It’s been a year and a half. Having my third MRI soon. No change from first to second. My meningioma is a left side convexity 3cm x 2cm x 1 1/2 cm. I saw a neurosurgeon recommended by my primary care physician. I went back to my PCP and asked if there was anyway I could get a Mayo consult. My hospital has an agreement with the Mayo Clinic so she was able to get me a free consult. She did all the leg work. Their interpretation was the same as my neurosurgeon. Since no symptoms and so far not growing wait and watch. I could have it removed because it is an easy removal spot but my PCP said it’s brain surgery so don’t do it if you don't have to. I’m 67 years old. There are new technology medical treatments being used and perfected every year. This is why waiting can be good if you aren’t having symptoms. I hope I won’t need surgery.

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Hi, I was in the same position. Left side Sphenoid Wing Meningioma, growing over my optical nerve as well. (6.4cm x 3.4cm 7.7cm). I started to have speech problems and in my left eye sometimes sharp pain. So I decided to do my second surgery (first surgery 2012) on 1/7/2020 here in Los Angeles. I was scared about my eye side and so other issue which could create a brain surgery, like you mentioned. When I woke up, after a 7 hour surgery, I couldn't believe I could see everything better, after 2 ½ days in the hospital they released, me due to the fact that I was "top-fit". I am so happy I did it. I am 67 years old myself but I did have problems and therefore had to consider the operation. I do know it is a difficult decision….good luck to you!!!

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Question i have an 8.9 mm spot on right temperal lobe that doesn’t enhance but how come you know what yours is and they have no idea what mine is and if glioma don’t know what kind?

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@ashley5423

Question i have an 8.9 mm spot on right temperal lobe that doesn’t enhance but how come you know what yours is and they have no idea what mine is and if glioma don’t know what kind?

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I don't think it is a glioma. It should be a meningioma. It needs to be checked from time to time. do not worry.

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@twomama

It’s very helpful reading all your responses to a mengioma diagnosis. I am 60 years old and just found out about my own diagnosis after suffering a concussion. The doctor recommended CT scan at which time they discovered the meningioma. The doctor recommended an MRI to see the exact size and location so I’m waiting to proceed with that. I’m fairly certain I will have a “watch and wait” approach and I think I’m fine with that.

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I am 81 yrs old and had a 5cm meningioma that has been removed by surgery 6 weeks ago. The medications that I was instructed to take have reeked havoc on my life, swollen right side of face, swollen lips, right eye not working properly, et al. I have stopped talking those meds (at Doctor's advice) but still get medium sized headaches. Since I forgot to ask Doc at my follow up, Can I take Exedrine for those headaches?

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Robin, Have you gotten any response to your question about the meningioma/ I just had one removed and it is looking like the worst decision of my life

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@pegorr

Wow, I thought maybe I was over worrying about my multiple tumors after two craniotomies, gamma knife and cyber knife, but have had swelling on my right cheekbone, pain, etc. and now find out the meningioma behind my right eye has started to grow , is invading my sinus and above cheekbone. Good Grief right. Has anyone had an experience with this. I was told it's too dangerous to operate so will need another round of radiation. This is definitely the never-ending story, and yet doctors act like having meningiomas are no big deal. peg

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There a new radiations with Protons+ They don't affect normal cells. they are more precise too. You should ask who can use them for you. Best wishes.

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@tonj657716

I had surgery on October 24th I am starting to feel better! For me surgery was what was recommended because of size and location! I wish you luck in whatever you choose! I feel better no headaches my arm and shoulder and leg pain is better pretty much all my problems are getting better!:

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That is wonderful news. Best of luck for your future.

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@pranas

Hi, I was in the same position. Left side Sphenoid Wing Meningioma, growing over my optical nerve as well. (6.4cm x 3.4cm 7.7cm). I started to have speech problems and in my left eye sometimes sharp pain. So I decided to do my second surgery (first surgery 2012) on 1/7/2020 here in Los Angeles. I was scared about my eye side and so other issue which could create a brain surgery, like you mentioned. When I woke up, after a 7 hour surgery, I couldn't believe I could see everything better, after 2 ½ days in the hospital they released, me due to the fact that I was "top-fit". I am so happy I did it. I am 67 years old myself but I did have problems and therefore had to consider the operation. I do know it is a difficult decision….good luck to you!!!

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I understand. I am in a Facebook group called Meningioma Talk. It is a private group. It is amazing how many stories there are. You hear of people that have had a tumor for years with no growth and then it will suddenly grow. Or people that have had no growth for 10 years or more. Or people that have growth within 3-6 months. It’s all new to me. Waiting is difficult. But I want to avoid surgery if I can. Thanks for your response.

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@sanderjakidd

I understand. I am in a Facebook group called Meningioma Talk. It is a private group. It is amazing how many stories there are. You hear of people that have had a tumor for years with no growth and then it will suddenly grow. Or people that have had no growth for 10 years or more. Or people that have growth within 3-6 months. It’s all new to me. Waiting is difficult. But I want to avoid surgery if I can. Thanks for your response.

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Sander, thanks for your reply. As a man who has had the surgery, I would say that if you can avoid it then do so. The recovery process is a bitch and appears that it will take a while. The actual surgery problems are no more than minimal, but the medications required are not
good at all. One those is KEPPRA which provides horrible times.

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