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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Hopefully you heard some comforting news from your neurosurgeon.
Knowing you have something growing in your brain is always a scare. I was diagnosed (by accident, like you) 6 years ago. We decided to wait and see how fast it grew-3 years later I talked with another neurosurgeon at Mayo and found it was time to remove it. Because of its size and where it was (size of a lime and attached to both sides of the brainstem) we decided to operate with a full side to side craniotomy. I think the unkown is the scariest part, finding a surgeon that YOU are totally comfortable with is important for that stress level and anxiety that builds. It now has been three years since my surgery, I did have to learn how to walk again (still have a few issues) but the operation, care and after check ups have been amazing. My after surgery meds were Tylenol!
With the first Neurosurgeon I saw, I was told for 3 years "pretend it's not there" - right....not!!! It is AMAZING what surgeons know and how they can work on the brain like they do-successfully. I feel God was by my side the whole way and we will be in a group that can offer testimonies and comfort to many to come. Good luck and may God bless you and remove any anxiety you may encounter. Picture of tumor before surgery.

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What did the neurosurgeon say about the meningioma?

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Today is the day I see the neurosurgeon. I have another appt scheduled for Monday as well. As many opinions as I can get. I have 3 young children ages 4-8. I am also getting head and back pain now. I believe it’ll have to be removed but am hoping for less invasive procedures. I am very interested in knowing what people’s recovery has looked like.

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I had it at Advent Health Hospital in Orlando Florida and Dr. Field was my neuro surgeon. He is an expert in Gamma surgery. He is really nice too. It's day surgery and I have had no side effects.

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@jmb73

I had an MRI in 2018 that showed a meningioma that was growing. I was eligible for Gamma Ray Knife surgery. The surgery was successful in stopping the growth. If the docs offer that surgery, let me know and I can walk you through it. I have had no problems and now I only need an MRI every 2 years to monitor it. Oh, the surgery is like having an MRI as it's non invasive.
Have a great day.

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Where did you have your procedure?

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@citychica

my mri just found a meningioma on my right on my pituitary gland. They found it as I was having vision loss, i still see 20/20 but only out of the center of my vision, all peripheral on my left eye is blurry. I have 3 children, almost 42 and super stressed. @pixie49247 what were the results of your meningioma as its been a year, i am curious to how it resuloved.

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i have similar types of vision problems and have for many years. Supposedly, it’s unrelated to my small meningioma that was found “incidentally” during a brain MRI in 2018. There is a remedy for that type of vision loss. It’s called “prisms” and is prescribed as part of a glasses RX. You want to find the most qualified practioner in your area fitting prisms. I happen to live in South Florida where the top eye institute in the country is located. I see a neuro-opthamologist who partners with a highly specialized optometrist who fits prisms. They can be designed to open your field of vision considerably. You don’t see prisms when you look at a pair of glasses but
they are designed and constructed to create an optical illusion.

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@mkoch

Jason, perhaps you have seen prior posts from me. I also had a meningioma, 2.7 centimeters,
1/16th of an inch from my optic nerve. The neurosurgeon at UCSF was able to remove it all when two other neuro doctors said the location was too risky. Resection (removal of the tumor) is always preferred, so you are "lucky" that you were given that choice. You are young and will do well. I was 71 when my meningioma was removed 8 months ago. The craniotomy was not the nightmare I was worried it would be. I was in the hospital 2 days, not even in the intensive care unit, and except for whatever pain meds they gave me during the surgery I was only on tylenol. I did have double vision for three months after my surgery, not because of damage to my optic nerve, but rather my cranial nerve #4 was compromised in some way. Good luck to you and I am sure you'll get to see your kids graduate and play with a passel of grandchildren some day.

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Thank you, that helps with the stress and anxiety a bit. I appreciate it! I’ve been somewhat of a mess leading up to surgery. I’m glad to hear everything went well for you and hope to have the same experience soon. I just want to have a good life with family and friends and start working again.

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@citychica

Is the blurry vision your only symptom? How did the meningioma come to light?

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Yes only the blurry vision. I have always had trouble with my ears plugging up. I went to ENT and they said they couldn’t find anything wrong with my ears. I mentioned I could hear my heartbeat and he immediately ordered a CT angiogram that’s where the mass was noted an hour and a half later they had me in for an MRI with him without contrast, and they immediately referred me to neurosurgery

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@mkoch

Jason, perhaps you have seen prior posts from me. I also had a meningioma, 2.7 centimeters,
1/16th of an inch from my optic nerve. The neurosurgeon at UCSF was able to remove it all when two other neuro doctors said the location was too risky. Resection (removal of the tumor) is always preferred, so you are "lucky" that you were given that choice. You are young and will do well. I was 71 when my meningioma was removed 8 months ago. The craniotomy was not the nightmare I was worried it would be. I was in the hospital 2 days, not even in the intensive care unit, and except for whatever pain meds they gave me during the surgery I was only on tylenol. I did have double vision for three months after my surgery, not because of damage to my optic nerve, but rather my cranial nerve #4 was compromised in some way. Good luck to you and I am sure you'll get to see your kids graduate and play with a passel of grandchildren some day.

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Your post has lifted my spirit. I'm 64 and having a craniotomy this fall. You said it wasn't so bad, I'm trying to stay positive that will be the case for me.

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@jasonl1012

Mine is in the same spot. I am scheduled for surgery at the end of the month to remove as much as possible. It’s pressing on my optic nerve too and I’m getting some blurry vision. It’s definitely stressful and scary. I have 2 kids and want to see them graduate and play with my grandkids someday!

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Jason, perhaps you have seen prior posts from me. I also had a meningioma, 2.7 centimeters,
1/16th of an inch from my optic nerve. The neurosurgeon at UCSF was able to remove it all when two other neuro doctors said the location was too risky. Resection (removal of the tumor) is always preferred, so you are "lucky" that you were given that choice. You are young and will do well. I was 71 when my meningioma was removed 8 months ago. The craniotomy was not the nightmare I was worried it would be. I was in the hospital 2 days, not even in the intensive care unit, and except for whatever pain meds they gave me during the surgery I was only on tylenol. I did have double vision for three months after my surgery, not because of damage to my optic nerve, but rather my cranial nerve #4 was compromised in some way. Good luck to you and I am sure you'll get to see your kids graduate and play with a passel of grandchildren some day.

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