multiple meningioma brain tumors

Posted by pegorr @pegorr, Sep 27, 2016

Is anyone here dealing with multiple meningioma brain tumors?

@morock77

My husband had one removed in 2010 and has 2 more now (meningiomas) he is in so much pain that he wants to end it all. But we have 4 children ages 4 to 15.

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As far as I know, radiation does work if the tumor is not very big. My tumor is over 3cm and I got different opinions, none of the doctors recommended radiation due to the size “except one doctor”!!!

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@wegotthis

I had no idea that I had these meningiomas. I am a 50 year old female and I had never had a head / brain mri until I went to the ER with symptoms. I was told they are typically slow growing and benign (which all of mine were WHO 1) and they usually "watch and wait" until they are causing pressure on the brain and causing symptoms.

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I had a similar situation – went to the ER because I fell on my arm and head and that's where they spotted the meningioma. I'm also on watch and wait – MRI next month to check.

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@kanaazpereira

Hello @wegotthis, and welcome to Connect. You're right that, "Because most meningiomas grow slowly, often without any significant signs and symptoms, they do not always require immediate treatment and may be monitored over time." https://www.mayoclinic.org/diseases-conditions/meningioma/symptoms-causes/syc-20355643

@morock77, I'm so sorry to hear about your husband; please take a look at the Mayo Clinic link, above as it has some detailed information about meningiomas.

You may also wish to view these discussions:
– Watching a Meningioma Brain Tumor https://connect.mayoclinic.org/discussion/watching-a-meningioma-brain-tumor/
– MayoClinicNeuroChat Live from American Association of Neurological Surgeons Annual Meeting https://connect.mayoclinic.org/webinar/mayoclinicneurochat-live-from-american-association-of-neurological-surgeons-annual-meeting/

I'd like to invite @robinem @eleanor1931seminara193 @lindajean @barbarabx @nancye3 @cnesselroad @pranas @wkindel into this discussion, and share their insights.

@morock77, may I ask if surgery is an option for your husband? How is he coping with the pain from day-to-day? @wegotthis, has your doctor outlined any next-steps for you?

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I have had 3 MRI post surgery and visit my neurology team at WVU Ruby regularly. This 9 month check up has indicated a spot that could be potentially a new meningioma. So now we watch and wait. Something I did not have to do deal with the first time since I had brain surgery 10 days following the discovery of the 5 tumors that I had removed in 2017. Gamma knife radiation has already been discussed for a plan with this one if needed.

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@kanaazpereira

Hello @wegotthis, and welcome to Connect. You're right that, "Because most meningiomas grow slowly, often without any significant signs and symptoms, they do not always require immediate treatment and may be monitored over time." https://www.mayoclinic.org/diseases-conditions/meningioma/symptoms-causes/syc-20355643

@morock77, I'm so sorry to hear about your husband; please take a look at the Mayo Clinic link, above as it has some detailed information about meningiomas.

You may also wish to view these discussions:
– Watching a Meningioma Brain Tumor https://connect.mayoclinic.org/discussion/watching-a-meningioma-brain-tumor/
– MayoClinicNeuroChat Live from American Association of Neurological Surgeons Annual Meeting https://connect.mayoclinic.org/webinar/mayoclinicneurochat-live-from-american-association-of-neurological-surgeons-annual-meeting/

I'd like to invite @robinem @eleanor1931seminara193 @lindajean @barbarabx @nancye3 @cnesselroad @pranas @wkindel into this discussion, and share their insights.

@morock77, may I ask if surgery is an option for your husband? How is he coping with the pain from day-to-day? @wegotthis, has your doctor outlined any next-steps for you?

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Where were and are the tumors located?

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@kanaazpereira

Hello @wegotthis, and welcome to Connect. You're right that, "Because most meningiomas grow slowly, often without any significant signs and symptoms, they do not always require immediate treatment and may be monitored over time." https://www.mayoclinic.org/diseases-conditions/meningioma/symptoms-causes/syc-20355643

@morock77, I'm so sorry to hear about your husband; please take a look at the Mayo Clinic link, above as it has some detailed information about meningiomas.

You may also wish to view these discussions:
– Watching a Meningioma Brain Tumor https://connect.mayoclinic.org/discussion/watching-a-meningioma-brain-tumor/
– MayoClinicNeuroChat Live from American Association of Neurological Surgeons Annual Meeting https://connect.mayoclinic.org/webinar/mayoclinicneurochat-live-from-american-association-of-neurological-surgeons-annual-meeting/

I'd like to invite @robinem @eleanor1931seminara193 @lindajean @barbarabx @nancye3 @cnesselroad @pranas @wkindel into this discussion, and share their insights.

@morock77, may I ask if surgery is an option for your husband? How is he coping with the pain from day-to-day? @wegotthis, has your doctor outlined any next-steps for you?

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All left frontal lobe which affected my walking and motor skills and balance. New one is directly on top center

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Do you get stabbing headaches?

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@morock77

Do you get stabbing headaches?

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I had stabbing pain in my eyebrow area for 40 years. I believed these to be migraines. No other head pain

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@kanaazpereira

Hello @wegotthis, and welcome to Connect. You're right that, "Because most meningiomas grow slowly, often without any significant signs and symptoms, they do not always require immediate treatment and may be monitored over time." https://www.mayoclinic.org/diseases-conditions/meningioma/symptoms-causes/syc-20355643

@morock77, I'm so sorry to hear about your husband; please take a look at the Mayo Clinic link, above as it has some detailed information about meningiomas.

You may also wish to view these discussions:
– Watching a Meningioma Brain Tumor https://connect.mayoclinic.org/discussion/watching-a-meningioma-brain-tumor/
– MayoClinicNeuroChat Live from American Association of Neurological Surgeons Annual Meeting https://connect.mayoclinic.org/webinar/mayoclinicneurochat-live-from-american-association-of-neurological-surgeons-annual-meeting/

I'd like to invite @robinem @eleanor1931seminara193 @lindajean @barbarabx @nancye3 @cnesselroad @pranas @wkindel into this discussion, and share their insights.

@morock77, may I ask if surgery is an option for your husband? How is he coping with the pain from day-to-day? @wegotthis, has your doctor outlined any next-steps for you?

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All over the left side of my brain. I have 19 left. I had 4 removed when I had my stroke 3 1/2 years ago.

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My husband has been experiencing stabbing pain to the head since 2010 after the first tumor was removed. These headaches he said feel like someone is stabbing him with a knife in the head. The doctors are still trying to figure out why. During these headaches he is slurring his speech, looks like a seizure ( which the doctors say there not seizures) then he passes out for 1 to 5 hours depending on severity of headaches.

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Hi Everyone. I'm new here. Just found out I have 6 brain tumors.

I noticed vision loss in my left eye (blurry vision and color vision loss) in April and it was thought to be optic neuritis. I didn't have a good insurance at the time so I decided to wait on the MRI until I get better insurance. I had no other symptoms besides the vision loss. Beginning in July, started to have headaches in the same place (back left side) and vision in left eye has decreased. MRI on 8/25 shows multiple meningiomas.

The largest meningioma is 1.9 cm and it's wrapped around my left optic nerve. Doctors think the meningiomas are benign from the way it looks but cannot be sure unless surgery is done. Also unsure how fast the meningiomas are growing because there is nothing to compare to as no prior MRIs were done.

I've discussed radiation treatment possibilities with the radiation oncologist and my appointment with the neurosurgeon is tomorrow. Right now, they are not looking to treat the other meningiomas, only the biggest one pressing on the optic nerve.

Doctors have ordered MRI of the spine to make sure I don't have meningiomas there as well. I am also scheduled to meet with a geneticist. I have no knowledge of a history of this in my family. My dad had meningitis as a child, diabetes as an adult, and passed away from colon cancer at 54. My mom had a benign tumor in her uterus which was removed when she was around 50.

I haven't been exposed to any more radiation than the average person and have always been in good overall health. I'm 34 years old and I'm so scared. I've never experienced anything like this before. I'm trying my best to stay positive but I'm terrified.

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@junebug222

Hi Everyone. I'm new here. Just found out I have 6 brain tumors.

I noticed vision loss in my left eye (blurry vision and color vision loss) in April and it was thought to be optic neuritis. I didn't have a good insurance at the time so I decided to wait on the MRI until I get better insurance. I had no other symptoms besides the vision loss. Beginning in July, started to have headaches in the same place (back left side) and vision in left eye has decreased. MRI on 8/25 shows multiple meningiomas.

The largest meningioma is 1.9 cm and it's wrapped around my left optic nerve. Doctors think the meningiomas are benign from the way it looks but cannot be sure unless surgery is done. Also unsure how fast the meningiomas are growing because there is nothing to compare to as no prior MRIs were done.

I've discussed radiation treatment possibilities with the radiation oncologist and my appointment with the neurosurgeon is tomorrow. Right now, they are not looking to treat the other meningiomas, only the biggest one pressing on the optic nerve.

Doctors have ordered MRI of the spine to make sure I don't have meningiomas there as well. I am also scheduled to meet with a geneticist. I have no knowledge of a history of this in my family. My dad had meningitis as a child, diabetes as an adult, and passed away from colon cancer at 54. My mom had a benign tumor in her uterus which was removed when she was around 50.

I haven't been exposed to any more radiation than the average person and have always been in good overall health. I'm 34 years old and I'm so scared. I've never experienced anything like this before. I'm trying my best to stay positive but I'm terrified.

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Hi, I am sorry to hear about your situation but don't get discouraged or terrified. I have also one M growing around my left optical nerve. The first signs were like yours, black eye and less vision in that eye. However, I had surgery in 2012 and now my vision is almost back to normal. I do not need glasses for driving only reading. By the way, nobody in my family (as far as I know) had such a brain tumor and I am otherwise a very healthy person. Again, it's difficult but please stay positive…it will help you overall and in making decision, etc. All the very best to you….

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@pranas

Hi, I am sorry to hear about your situation but don't get discouraged or terrified. I have also one M growing around my left optical nerve. The first signs were like yours, black eye and less vision in that eye. However, I had surgery in 2012 and now my vision is almost back to normal. I do not need glasses for driving only reading. By the way, nobody in my family (as far as I know) had such a brain tumor and I am otherwise a very healthy person. Again, it's difficult but please stay positive…it will help you overall and in making decision, etc. All the very best to you….

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Hello @pranas

I really liked your reply to @junebug222, and especially the sentence that said,

"Again, it's difficult but please stay positive…it will help you overall and in making decision, etc."

This is so true! Remaining positive helps you to think more clearly and to make better decisions.

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I am trying hard to stay positive. I leave for Phoenix Mayo Clinic this coming Weds to begin the preoperative process. My surgery is the 10th. As it draws nearer it's hard not to think about how my life will change preop and any complications I may face. However I thank God for all he has done for me during my 68 years on earth. I have been rescued many times from perilous condititions some imposed by others and some by my own self will run riot. I have a wonderful husband of almost 43 years and we raised 5 beautiful children. They have given me 10 loving grandchildren and spouses that have been gracious to me. I am so blessed. Whatever happens in surgery I trust it will be according to God's will for a reason. I just hope I can handle whatever happens with courage and a small amount of grace at least.

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@rose4622

I am trying hard to stay positive. I leave for Phoenix Mayo Clinic this coming Weds to begin the preoperative process. My surgery is the 10th. As it draws nearer it's hard not to think about how my life will change preop and any complications I may face. However I thank God for all he has done for me during my 68 years on earth. I have been rescued many times from perilous condititions some imposed by others and some by my own self will run riot. I have a wonderful husband of almost 43 years and we raised 5 beautiful children. They have given me 10 loving grandchildren and spouses that have been gracious to me. I am so blessed. Whatever happens in surgery I trust it will be according to God's will for a reason. I just hope I can handle whatever happens with courage and a small amount of grace at least.

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@rose4622 I have been thinking about you lately as I know that your upcoming surgery must be on your mind.

Your recent post states some very positive thoughts and that is great. I am looking forward to hearing from you again post-op and I hope that the symptoms you are now experiencing will be alleviated a great deal. I'm sure that you will handle it all with grace!

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@pranas

Hi, I am sorry to hear about your situation but don't get discouraged or terrified. I have also one M growing around my left optical nerve. The first signs were like yours, black eye and less vision in that eye. However, I had surgery in 2012 and now my vision is almost back to normal. I do not need glasses for driving only reading. By the way, nobody in my family (as far as I know) had such a brain tumor and I am otherwise a very healthy person. Again, it's difficult but please stay positive…it will help you overall and in making decision, etc. All the very best to you….

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Thank you. I'm trying my best. It's been a few days since I first got the news so now I've had some time to digest everything. Thank you for sharing your experiences. It appears that M around the optic nerve is pretty rare?

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