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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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graymary | @graymary | Jul 4 5:08pm
In reply to @jmb73 "I had an MRI in 2018 that showed a meningioma that was growing. I was eligible..." + (show)
@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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jmb73 | @jmb73 | Jul 5 8:11am

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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citychica | @citychica | Jul 5 9:05am

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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jmb73 | @jmb73 | Jul 6 8:02am

What did the neurosurgeon say about the meningioma?

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teresaallen | @teresaallen | Jul 6 8:30am

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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citychica | @citychica | Jul 6 8:54am

I’m frustrated, surgeon doesn’t believe the tumor is causing the vision problems in my left eye as the tumor is on the right and wants to do a wait and see if it grows in 3 months. Wants me to continue to see my eye doctors. I am seeing an eye doctor at UCLA in 11 days.

Also if they were to remove the tumor, because where it is near too many nerves, They wouldnt be able to remove all of it. Otherwise, they would treat with radiation which wouldn’t shrink it but stop growth.

I’m seeing another surgeon Monday so we will see what they say. I was told the meningioma is 3.6 cm long and 2.4 cm wide at its widest. Curious if I should go to Mayo.

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3 replies
jasonl1012 | @jasonl1012 | Jul 6 9:37am
In reply to @citychica "I’m frustrated, surgeon doesn’t believe the tumor is causing the vision problems in my left eye..." + (show)
@citychica

I’m frustrated, surgeon doesn’t believe the tumor is causing the vision problems in my left eye as the tumor is on the right and wants to do a wait and see if it grows in 3 months. Wants me to continue to see my eye doctors. I am seeing an eye doctor at UCLA in 11 days.

Also if they were to remove the tumor, because where it is near too many nerves, They wouldnt be able to remove all of it. Otherwise, they would treat with radiation which wouldn’t shrink it but stop growth.

I’m seeing another surgeon Monday so we will see what they say. I was told the meningioma is 3.6 cm long and 2.4 cm wide at its widest. Curious if I should go to Mayo.

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So is it by the pituitary gland? And pressing up on the optic nerve? That’s where mine is and I’ve had two opinions so far and going to Mayo in 10 days. I can let you know what they say, but so far all have said remove it. At 3 cm I’m surprised they wouldn’t. Definitely get another opinion at Mayo. It’s your health and you deserve it

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2 replies
elisabeth007 | @elisabeth007 | Jul 6 2:24pm
In reply to @citychica "I’m frustrated, surgeon doesn’t believe the tumor is causing the vision problems in my left eye..." + (show)
@citychica

I’m frustrated, surgeon doesn’t believe the tumor is causing the vision problems in my left eye as the tumor is on the right and wants to do a wait and see if it grows in 3 months. Wants me to continue to see my eye doctors. I am seeing an eye doctor at UCLA in 11 days.

Also if they were to remove the tumor, because where it is near too many nerves, They wouldnt be able to remove all of it. Otherwise, they would treat with radiation which wouldn’t shrink it but stop growth.

I’m seeing another surgeon Monday so we will see what they say. I was told the meningioma is 3.6 cm long and 2.4 cm wide at its widest. Curious if I should go to Mayo.

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My neuro-opthamologist at Bascom Palmer in Miami is the one who detected my meningioma. He has ordered every diagnostic test imaginable to determine the cause of my fluctuating vision loss. I also see a cornea specialist

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elisabeth007 | @elisabeth007 | Jul 6 2:26pm
In reply to @citychica "I’m frustrated, surgeon doesn’t believe the tumor is causing the vision problems in my left eye..." + (show)
@citychica

I’m frustrated, surgeon doesn’t believe the tumor is causing the vision problems in my left eye as the tumor is on the right and wants to do a wait and see if it grows in 3 months. Wants me to continue to see my eye doctors. I am seeing an eye doctor at UCLA in 11 days.

Also if they were to remove the tumor, because where it is near too many nerves, They wouldnt be able to remove all of it. Otherwise, they would treat with radiation which wouldn’t shrink it but stop growth.

I’m seeing another surgeon Monday so we will see what they say. I was told the meningioma is 3.6 cm long and 2.4 cm wide at its widest. Curious if I should go to Mayo.

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If u wish, you can have a mayo brain tumor zoom appt. i did

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1 reply
rsr40 | @rsr40 | Jul 7 1:32pm
In reply to @elisabeth007 "If u wish, you can have a mayo brain tumor zoom appt. i did" + (show)
@elisabeth007

If u wish, you can have a mayo brain tumor zoom appt. i did

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How do you arrange a Mayo zoom appointment?

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