Meningioma: Anyone else? I'm frightened

Posted by pixie49247 @pixie49247, May 12, 2023

I just found out I have a Meningioma tumor from a MRI I had for something else. Doctor said they are almost always benign and am going to get an appointment with a neurologist. Anyone else have one of these. I’m getting very frightened now.

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Profile picture for dlc1953 @dlc1953

@lisaj63 good morning. Gamma knife is a procedure using a one time radiation treatment. I went in around 6:30am and walked out at 3:30pm. Feeling fine. The most important thing is finding a really good surgeon at a good teaching hospital. Forget community hospitals because they are closer. Fortunately I’m an hour away from Univ. of Pa. I was given anesthesia to put a halo on my head, so when I went through the procedure my head would be perfectly still. No problem. I believe that there are 180 rays shot into one spot to target the tumor. Recovery was easy. They took the halo off after I woke up. It was easy, no pain (I’m glad that they knocked me out to put it on). Like I said I walked out feeling good. Had several checkups afterwards. Now I am on a 1 year MRI to see the progress. They told me within the first year it might be a smidgen bigger, than it starts to shrink slowly and or the Gamma Ray stops it from growing. That’s why they do it before it reaches a certain size. Again, I would think that there are other factors involved with what procedure is to be done. The size, placement etc. good luck, the worry was worse than the procedure.

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@dlc1953 Thank you so much! Can’t tell you how much I appreciate your prompt, thorough response!🙏🏽

My tumor is 1cm on the top, RT side so we shall see what the Opthomeurologist has to say. Fortunately, I’m surrounded by good teaching universities incl UCSF and. Stanford so will definitely tap into that resource.

I’m so glad your treatment went well and pray that everything continues to go well. Blessings to you!💕🙏🏽

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Profile picture for Maryann @mkoch

@lisaj63: There are a lot of good, descriptive posts on this forum regarding gamma knife treatment from people who have had radiation to their tumor through gamma knife rather than a craniotomy. Yes, surgical removal is the first choice when dealing with a meningioma if it is causing symptoms. However, the location of this usually benign tumor or one's age or health status often cancels out the possibility of a brain surgery. I, personally, chose having the meningioma that was 1/16th of an inch from my optic nerve removed rather than have radiation. After consulting with a radiation oncologist I learned that gamma knife and/or cyber knife come with their own set of possible side effects that I didn't want to take the chance of experiencing. And my personal experience with the craniotomy was that it wasn't that bad; it was actually an easier surgery and recovery than my hysterectomy.

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@mkoch Okay, got it! Yes I’m learning from this community that it’s all about size and placement of the tumor!

Mine is 1cm in the top RT side of my brain. I’ve had a hysterectomy so thank you for the context! I don’t see the Opthoneurologist for several weeks but will be sure to let you all know her recommendation.

In the meantime…I wait!

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Profile picture for Maryann @mkoch

@lisaj63: There are a lot of good, descriptive posts on this forum regarding gamma knife treatment from people who have had radiation to their tumor through gamma knife rather than a craniotomy. Yes, surgical removal is the first choice when dealing with a meningioma if it is causing symptoms. However, the location of this usually benign tumor or one's age or health status often cancels out the possibility of a brain surgery. I, personally, chose having the meningioma that was 1/16th of an inch from my optic nerve removed rather than have radiation. After consulting with a radiation oncologist I learned that gamma knife and/or cyber knife come with their own set of possible side effects that I didn't want to take the chance of experiencing. And my personal experience with the craniotomy was that it wasn't that bad; it was actually an easier surgery and recovery than my hysterectomy.

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@mkoch I’m glad you had a positive outcome and am praying that you continue to do well!🙏🏽

Thanks so much for sharing!💕

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Profile picture for lisaj63 @lisaj63

@dlc1953 Thank you so much! Can’t tell you how much I appreciate your prompt, thorough response!🙏🏽

My tumor is 1cm on the top, RT side so we shall see what the Opthomeurologist has to say. Fortunately, I’m surrounded by good teaching universities incl UCSF and. Stanford so will definitely tap into that resource.

I’m so glad your treatment went well and pray that everything continues to go well. Blessings to you!💕🙏🏽

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@lisaj63: I had my craniotomy exactly 2 years ago at UCSF and just had a zoom video check up with the neurosurgeon who did the surgery last week. I can't say enough wonderful things about my experience. Dr. Theodosopoulos is the neurosurgeon you would want to see for a craniotomy and he also runs the gamma knife radiation clinic. During my initial consult 2 years ago, which was also a zoom visit, he went over the MRI I had digitally transferred from my local clinic (my meningioma was also discovered incidentally) gave me all the information I needed and said it was my choice. He recommended a craniotomy but he also runs the clinic that does the gamma ray procedure. Once again, can't say enough great things about my experience at UCSF. It's rated #2 in the country for neurosurgery.

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Profile picture for crowley53 @crowley53

@dollyjaneprenzel , I'm doing fine so far. Just tired after radiation. Trying to back off being hard on myself for not doing more at home and in the yard.

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@crowley53 how's your radiation going? I'm also scheduled for radiation.

Do you also undergo surgery before radiation?

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Profile picture for lisaj63 @lisaj63

@dlc1953 Thank you so much! Can’t tell you how much I appreciate your prompt, thorough response!🙏🏽

My tumor is 1cm on the top, RT side so we shall see what the Opthomeurologist has to say. Fortunately, I’m surrounded by good teaching universities incl UCSF and. Stanford so will definitely tap into that resource.

I’m so glad your treatment went well and pray that everything continues to go well. Blessings to you!💕🙏🏽

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@lisaj63 my tumor was also the top right on my head. Good luck.

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Profile picture for Maryann @mkoch

@lisaj63: I had my craniotomy exactly 2 years ago at UCSF and just had a zoom video check up with the neurosurgeon who did the surgery last week. I can't say enough wonderful things about my experience. Dr. Theodosopoulos is the neurosurgeon you would want to see for a craniotomy and he also runs the gamma knife radiation clinic. During my initial consult 2 years ago, which was also a zoom visit, he went over the MRI I had digitally transferred from my local clinic (my meningioma was also discovered incidentally) gave me all the information I needed and said it was my choice. He recommended a craniotomy but he also runs the clinic that does the gamma ray procedure. Once again, can't say enough great things about my experience at UCSF. It's rated #2 in the country for neurosurgery.

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@mkoch Oh wow…I’m so glad to hear! I’ve jotted down your surgeons name for future reference if needed. Grateful to have an excellent surgeon who has ad great outcomes in my backyard! Thanks for sharing!

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Profile picture for kmborromeo @kmborromeo

@crowley53 how's your radiation going? I'm also scheduled for radiation.

Do you also undergo surgery before radiation?

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@kmborromeo , Radiation is done. 5 treatments about 45 mins each start to finish. I requested mild sedation. After all the MRI's I can't handle things touching my face. The treatments easier than the MRI's. Neuro said no surgery. Finished 2 weeks ago and so far no hair loss. I am very tired.

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Profile picture for crowley53 @crowley53

@kmborromeo , Radiation is done. 5 treatments about 45 mins each start to finish. I requested mild sedation. After all the MRI's I can't handle things touching my face. The treatments easier than the MRI's. Neuro said no surgery. Finished 2 weeks ago and so far no hair loss. I am very tired.

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@crowley53

Did they have to bolt a halo on your head? I don’t want that done ever again

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