multiple meningioma brain tumors

Posted by pegorr @pegorr, Sep 27, 2016

Is anyone here dealing with multiple meningioma brain tumors?

Yes, we are!!!. Just finished 20 rounds of Photon therapy on Monday!. They shot a proton beam 60% of the speed light into where my tumor is grown. It was bad a$$.

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Congrats for being DONE and kicking a$$ !!!!

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@pegorr

Hi and Welcome. You and I are in a similar boat, one of my 5+ tumors is in my sphenoid wing,and in the bone and tumor and bone are pressing on my optic nerve and have been for at least 7+ years. I did have that one excised as much as possible and the rest radiated. I can see pretty good considering. I just did gamma knife on the tumor on the left side and I’m a fan of radiation versus surgery, although I’ve had 2. We are definitely strong warriors and a good sense of humor doesn’t hurt as well:-) All my best to you. peg

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No exrays just a huge bump and mild bruising on my forhead above my left eye. I used to joke about being hard headed because my head cracked the wind shield but my head was fine. Lol

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@pegorr

Hi and Welcome. You and I are in a similar boat, one of my 5+ tumors is in my sphenoid wing,and in the bone and tumor and bone are pressing on my optic nerve and have been for at least 7+ years. I did have that one excised as much as possible and the rest radiated. I can see pretty good considering. I just did gamma knife on the tumor on the left side and I’m a fan of radiation versus surgery, although I’ve had 2. We are definitely strong warriors and a good sense of humor doesn’t hurt as well:-) All my best to you. peg

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Ha! Can tell you have a great sense of humor! That is a GOOD thing when you have to go through all these medical challenges 🙂

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Good Afternoon All, I hope its ok for me to add a post, as I am just interested in discussing and advice from others, thank you. My name is Fleur and I live in Kerikeri, Bay of Islands, NZ. There's no specialists here so I travel to Auckland to see my Neurosurgeon and for scans etc. I had surgery 4 years ago, then I had one tumor surgery went well, however 4 years later I have I think 6 now. In the last 2 years every time I have a scan they say more have turned up. I'm on watch and wait but I do have surgery planned long term for 2 of them. Just still watching for now, 1 is close to a vessel so just a matter of growing time. The others two are in too deep and ones somewhere behind the eye, but ok for now. Because I live in NZ we possibly aren't so up to date withthe latest trials, info etc, don't think we have any discussion groups, we are a small country etc, and I I'm not sure how many people get multiples this is no disrespect to my surgeon who is truely wonderful. So I am here for news, updates, friendship and anything that I can offer. Thank you everyone, wishing you all happy health and wellness, warmest regards Fleur

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@fleurnz

Good Afternoon All, I hope its ok for me to add a post, as I am just interested in discussing and advice from others, thank you. My name is Fleur and I live in Kerikeri, Bay of Islands, NZ. There's no specialists here so I travel to Auckland to see my Neurosurgeon and for scans etc. I had surgery 4 years ago, then I had one tumor surgery went well, however 4 years later I have I think 6 now. In the last 2 years every time I have a scan they say more have turned up. I'm on watch and wait but I do have surgery planned long term for 2 of them. Just still watching for now, 1 is close to a vessel so just a matter of growing time. The others two are in too deep and ones somewhere behind the eye, but ok for now. Because I live in NZ we possibly aren't so up to date withthe latest trials, info etc, don't think we have any discussion groups, we are a small country etc, and I I'm not sure how many people get multiples this is no disrespect to my surgeon who is truely wonderful. So I am here for news, updates, friendship and anything that I can offer. Thank you everyone, wishing you all happy health and wellness, warmest regards Fleur

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Kia ora and welcome to Connect, @fleurnz. We have several New Zealanders sharing here on Connect in various groups.

You'll notice that I moved your message to an existing discussion so you can easily meet other members talking about multiple meningiomas. If you click VIEW & REPLY in the email, you can read through the past messages and get to know @pegorr @cnesselroad @lindajean @nancye3 @barbarabx @eleanor1931seminara1931 @elewis and others.

Fleur, is stereotactic radiosurgery (SRS), sometimes called cyberknife or gamma knife surgery, an option for you?

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Yes. I too had multiple meningiomas. I had 4 tumors in my left frontal lobe. The largest was about 4 inches from end to end. I began having trouble walking and shaking episodes last August. I went to the ER and the tumors were discovered. Since they were large and causing neurological problems I had to having brain surgery. On Sept 6, 2017 I had a craniotomy at WVU Ruby Hopital. I had PT for 7 weeks following surgery to regain my balance and stability. My Memory and concentration has been affected but I am alive and well all things considered.

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@wegotthis

Yes. I too had multiple meningiomas. I had 4 tumors in my left frontal lobe. The largest was about 4 inches from end to end. I began having trouble walking and shaking episodes last August. I went to the ER and the tumors were discovered. Since they were large and causing neurological problems I had to having brain surgery. On Sept 6, 2017 I had a craniotomy at WVU Ruby Hopital. I had PT for 7 weeks following surgery to regain my balance and stability. My Memory and concentration has been affected but I am alive and well all things considered.

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The doctors told my husband that they don't want to operate unless it grows was that the same for you?

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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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@colleenyoung

Welcome to Connect, Peg.
I moved your message to the Brain Tumor group so that you can more easily connect with other members who have meningioma. You might be interested in joining the discussion “Meningioma – I’m scared to watch and wait” http://mayocl.in/2d9egF3

I’m bringing @lindajean into this conversation. She, too, has had multiple meningioma brain tumors.
Peg, we look forward to getting to know more about you. How many tumors have you had and how were they treated?

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I just was diagnosed with a meningioma and told it is near an artery and may require radiation. Having another MRI next month at which time the affect on the artery will be researched. I am so grateful to find this thread and now know that if I have to have surgery, I am heading to Mayo. I was there before years ago and think very highly of the doctors there. I hope your sister comes through with flying colors, Nancy, and wish all of you the best. Thank you to everyone here for sharing their stories.

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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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@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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Gamma knife radiation an option to attack and shrink these tumors without having brain surgery. Find a good neurosurgeon who uses this procedure it is an option. No one should have to live in that much pain

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@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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The doctors in Fargo said radiation is not an option because radiation is what caused his tumors they say. He had leukemia at age 2.

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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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@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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Nothing like ibuprofen and Excedrin doesn't work. Laying down also doesn't work still waiting for over 6 months to see what our next step is. The tumor that he had in 2010 grew from a golf ball to a grapefruit in a matter of days. The doctors don't want to do surgery because it can be fatal. My husband only received 2 different pain pills since 2010 which he got 2 months ago but had to get off them since they were making him very sick. I want to take him to the mayo clinic but finances and a sitter is preventing us from going there. The doctors even don't know what is causing the headaches, nor why he has an seizure like attack which makes him pass out for hours. Doctors say they are not seizures then what the heck are they!!? I'm terrified and stressed because no one has answers nor the treatment that he so desperately needs.

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