Diagnosed with Meningioma

Posted by IrishMomz @irishmomz, Aug 7, 2019

Saw a neurosurgeon went over my options. My surgery date is tentatively the end of this month. Nervous.. looking for advice from someone who has been through it. Tumor is located behind my left eye and is attached to my optic nerve.

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@rh61

Hi I’m new here.
In 2019 I was rear ended hard, my left side forehead hit the steering wheel. I only had a busted lip, didn’t go to ER.
I went to ER the next morning due to large bump, headache and N&V they did an MRI and they didn’t see anything that was worrisome told me just to wait it out. 4 months later I went to a neurologist for pain behind the left eye, memory focus concentration problems. He did another MRI and found the meningioma. 4 years later it has doubled in size from 4mm to 8mm and as of last week is continuous grow.
I was told just check it in a year. Is this a normal procedure to wait while it keeps growing ?

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rh61: NO, this is not acceptable care. You state that as of last week it is still growing. At the minimum a repeat scan should be at the 6 month mark, not a year. You need a second opinion from a neurosurgeon, not a neurologist.

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Hi I’m new here.
In 2019 I was rear ended hard, my left side forehead hit the steering wheel. I only had a busted lip, didn’t go to ER.
I went to ER the next morning due to large bump, headache and N&V they did an MRI and they didn’t see anything that was worrisome told me just to wait it out. 4 months later I went to a neurologist for pain behind the left eye, memory focus concentration problems. He did another MRI and found the meningioma. 4 years later it has doubled in size from 4mm to 8mm and as of last week is continuous grow.
I was told just check it in a year. Is this a normal procedure to wait while it keeps growing ?

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@fiddlinchuck

Hello @pam1954, about 4 years ago, I learned through an MRI that I had a very large meningioma that would require surgery to remove. Other treatment options were not considered to be viable. Like you, I did not have many overt symptoms beforehand, but I did have 3 syncope events, for which I decided to visit my PC. His hunch was that the events were probably caused by a heart condition, so I go quite a cardio workup. As almost an after thought, an MRI was prescribed. The MRI was interrupted by the technician who stopped it and called the Emergency Dept., which requested that I be ushered over there immediately. I did not understand what was happening until I met with the ER docto, who showed me the available MRI imagery, told me that it showed what he called a tumor, and indicated that I needed to meet with a neurosurgeon, who showed up minutes later. The neurosurgeon explained that the growth was a very large meningioma that was likely non cancerous, that had been growing for many years, and was likely the cause of my syncope events. The imagery clearly showed that it surrounded my optical nerve and also encased my cerebral artery. Probably like you, I had never heard of a meningioma and wondered what it meant for me. I was told that I would need surgery to remove the growth but that it could not be done at our small town surgery center and was referred to a larger medical center that could handle the job. I was also prescribed Keppra, 750 mg, twice a day to ward off possible seizures. My surgery got scheduled for about 2 months later. I wanted the surgery date to arrive soon so that I could get this over with but, on the other hand, I was dreading the arrival of the date. The surgery team was very careful and left in place what was said to be about 10% of the meningioma because of its close association with my optical nerve and artery. As noted by someone else, the craniotomy was not as bad as I thought it would be and I had very little pain afterwards, requiring only Tylenol on one occasion to dull the sensation. My opthamologist exams after surgery were normal. I have had annual followup MRIs to monitor the residual meningioma and, thank goodness, it has not grown larger during that past 4 years.

I know from experience how jarring a sudden and unexpected diagnosis of a meningioma can be, but for both of us, it is very fortuitous that it has been recognized. I would not know if there are treatment options other than surgery available to help protect your optical nerve, but I would suggest asking about the best approach for protecting your vision. I extend my best wishes to you as you go forward and wish you the best possible outcome of your treatment. Good luck!

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OMG this, up until the MRI, is exactly what happened to me! Only from the CT they suspected something, then ordered a MRI. I have an appointment at May 5/6/2025.. glad to read this before my appointment! Thank you!

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@mothermary1

This is an old post I found hoping for someone to respond. I’m waiting for my latest mri. What type and where was your tumors.
Mine is SSS I think Superior Sinus something. Hope I hear back.
Thanks

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@mothermary1, the last you wrote you were waiting for test results. Any update? How are you doing?

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This is an old post I found hoping for someone to respond. I’m waiting for my latest mri. What type and where was your tumors.
Mine is SSS I think Superior Sinus something. Hope I hear back.
Thanks

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Prayers for you🙏 My 19 year old has the same diagnosis about 2019 , and so far no new growth. He is being followed at Mayo, RochesterHas there ever been A cure for this?

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@bill1980

In 2016, I was hospitalized for excruciating pain in my head. After undergoing an MRI scan, I received the devastating news that I had a brain tumor. Unfortunately, doctors were unable to determine if it was cancerous and the location of the tumor made a biopsy too risky. Despite the daunting prognosis, I chose not to undergo the biopsy due to the high risk of paralysis or blindness.

Although the doctors were initially unsure if I would make it out of the hospital, I eventually did. However, I've continued to experience deteriorating health since then, and today I'm essentially just surviving. Despite the challenges, I'm grateful to have discovered a community of individuals who are facing similar medical struggles.

Currently, I'm losing mobility on my left side, which is particularly tough since I work as a bartender and require the use of both hands. I feel lost and unsure of where to go from here. Nonetheless, I'm thankful for each day that God gives me and will continue to push forward.

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I am so sorry that you are having all these issues. I had Gamma surgery in 2019 and so far, things are good. Did you ask the doctors if you could have Gamma surgery? The surgery uses lasers and it stopped my meningioma from growing. I have an MRI every other year to monitor it.
I will pray for you .

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@purpleturtle

I am so sorry you are going through this.
I am assuming you went to the Mayo Clinic since you are on this blog. I also went there after a brain tumor diagnosed. They were wonderful. Do you follow up with brain scans to see the status of your tumor?
I had Gamma knife and surgery in 2019. I also have increased
mobility issues on my left side which effects my hand and walking. I have started seeing a motion specialist (who knew there was such a thing) in my city who has helped me with medication and physical and occupational therapy . Please know that you are in my prayers.
God will take of you.

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No i haven't been to the mayo hospital i thought this group was for anyone going through the same thing im sorry and thanks for the prays likewise

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@bill1980

In 2016, I was hospitalized for excruciating pain in my head. After undergoing an MRI scan, I received the devastating news that I had a brain tumor. Unfortunately, doctors were unable to determine if it was cancerous and the location of the tumor made a biopsy too risky. Despite the daunting prognosis, I chose not to undergo the biopsy due to the high risk of paralysis or blindness.

Although the doctors were initially unsure if I would make it out of the hospital, I eventually did. However, I've continued to experience deteriorating health since then, and today I'm essentially just surviving. Despite the challenges, I'm grateful to have discovered a community of individuals who are facing similar medical struggles.

Currently, I'm losing mobility on my left side, which is particularly tough since I work as a bartender and require the use of both hands. I feel lost and unsure of where to go from here. Nonetheless, I'm thankful for each day that God gives me and will continue to push forward.

Jump to this post

I am so sorry you are going through this.
I am assuming you went to the Mayo Clinic since you are on this blog. I also went there after a brain tumor diagnosed. They were wonderful. Do you follow up with brain scans to see the status of your tumor?
I had Gamma knife and surgery in 2019. I also have increased
mobility issues on my left side which effects my hand and walking. I have started seeing a motion specialist (who knew there was such a thing) in my city who has helped me with medication and physical and occupational therapy . Please know that you are in my prayers.
God will take of you.

REPLY

In 2016, I was hospitalized for excruciating pain in my head. After undergoing an MRI scan, I received the devastating news that I had a brain tumor. Unfortunately, doctors were unable to determine if it was cancerous and the location of the tumor made a biopsy too risky. Despite the daunting prognosis, I chose not to undergo the biopsy due to the high risk of paralysis or blindness.

Although the doctors were initially unsure if I would make it out of the hospital, I eventually did. However, I've continued to experience deteriorating health since then, and today I'm essentially just surviving. Despite the challenges, I'm grateful to have discovered a community of individuals who are facing similar medical struggles.

Currently, I'm losing mobility on my left side, which is particularly tough since I work as a bartender and require the use of both hands. I feel lost and unsure of where to go from here. Nonetheless, I'm thankful for each day that God gives me and will continue to push forward.

REPLY
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