Anyone have multiple meningioma brain tumors?

Posted by pegorr @pegorr, Sep 27, 2016

Is anyone here dealing with multiple meningioma brain tumors?

Interested in more discussions like this? Go to the Brain Tumor Support Group.

@lindajean

Dr. O'Neill has been my doctor for over 10 years and through his excellent advice has managed my meningioma's without surgery at this point. His advice to stay away from any hormonal therapy when I reached menopause and switching to only organic food along with no soy products ( because all can act like estrogen and "feed" the tumor growth) is what I attribute to my slow growth and the ability to watch and wait since my tumors are left frontal lobe and not causing any other issues. He is a hero to me!!!! A wonderful man who instills well deserved confidence thanks to his skill and kindness.

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Good Morning,Thanks so much for your reply. Did you have any side effects from the Cyberknife procedure. My sister is so worried as she has read it could cause bleeding and or swelling in the brain, dementia, cognitive problems, possibly another tumor years later. 
So glad you are doing well now andwishing you continued good health!

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@lindajean

Dr. O'Neill has been my doctor for over 10 years and through his excellent advice has managed my meningioma's without surgery at this point. His advice to stay away from any hormonal therapy when I reached menopause and switching to only organic food along with no soy products ( because all can act like estrogen and "feed" the tumor growth) is what I attribute to my slow growth and the ability to watch and wait since my tumors are left frontal lobe and not causing any other issues. He is a hero to me!!!! A wonderful man who instills well deserved confidence thanks to his skill and kindness.

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No. I didnt have any side effects from cyber knife. I had 5 treatments in a row for 5 days one hr. Each time. My tumor is 7mm in size behind my right eye. The original tumor was on mytemporal lobe it was the size of a ping pong ball. I wish ur sister all the best.
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@lindajean

Dr. O'Neill has been my doctor for over 10 years and through his excellent advice has managed my meningioma's without surgery at this point. His advice to stay away from any hormonal therapy when I reached menopause and switching to only organic food along with no soy products ( because all can act like estrogen and "feed" the tumor growth) is what I attribute to my slow growth and the ability to watch and wait since my tumors are left frontal lobe and not causing any other issues. He is a hero to me!!!! A wonderful man who instills well deserved confidence thanks to his skill and kindness.

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Thank you. My sister was able to go thru Mayo to book her flight and hotel. Have you read about anyone on this site that had more than one tumor appear on an MRI. My sister's are in different places than her original one. And all showed up at the same time. 

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@nancye3

My sister has an appointment at Mayo Clinic July 26th for a 3rd opinion for 3 recently diagnosed meningiomas. Has anyone been a patient of Dr. O'Neill or Dr Meyer at Mayo? She had a meningioma surgically removed in 2001 after a seizure.

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Hi Nancy and LindaJean,
Thanks for mentioning the possibility of booking a flight through Mayo Clinic that allows you to change flights free of charge should your stay be extended or shortened. You may be interested to know more about Concierge Services at Mayo Clinic. They can help you plan your visit. Read more here:
- Concierge services: Navigating your Mayo Clinic visit https://connect.mayoclinic.org/newsfeed-post/concierge-services-navigating-your-mayo-clinic-visit/

@clockrem12 can help further should you have additional questions.

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@lindajean

Dr. O'Neill has been my doctor for over 10 years and through his excellent advice has managed my meningioma's without surgery at this point. His advice to stay away from any hormonal therapy when I reached menopause and switching to only organic food along with no soy products ( because all can act like estrogen and "feed" the tumor growth) is what I attribute to my slow growth and the ability to watch and wait since my tumors are left frontal lobe and not causing any other issues. He is a hero to me!!!! A wonderful man who instills well deserved confidence thanks to his skill and kindness.

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Hi @07ram, thank you for the MDAnderson recommendation. Were you offered a choice between Gamma knife or cyberknife? What was the cyberknife procedure like?

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@nancye3

My sister has an appointment at Mayo Clinic July 26th for a 3rd opinion for 3 recently diagnosed meningiomas. Has anyone been a patient of Dr. O'Neill or Dr Meyer at Mayo? She had a meningioma surgically removed in 2001 after a seizure.

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Sorry I did not see this sooner. My wife was a patient of Dr. Meyer. He is a gifted surgeon and an amazing doctor. IIRC he is the head of the Neuro department now as well as head of the Medical Education at Mayo. None finer in my estimation.

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@nancye3

My sister has an appointment at Mayo Clinic July 26th for a 3rd opinion for 3 recently diagnosed meningiomas. Has anyone been a patient of Dr. O'Neill or Dr Meyer at Mayo? She had a meningioma surgically removed in 2001 after a seizure.

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Thanks so much for your reply. My sister is so worried about having any treatment at Mayo when she lives in Atlanta. She is getting conflicting opinions here from neurosurgeons she has seen and wants to go to a major medical center like Mayo for a third opinion. Did your wife have radiation or surgery at Mayo. I hope she is doing well.

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@lindajean

Dr. O'Neill has been my doctor for over 10 years and through his excellent advice has managed my meningioma's without surgery at this point. His advice to stay away from any hormonal therapy when I reached menopause and switching to only organic food along with no soy products ( because all can act like estrogen and "feed" the tumor growth) is what I attribute to my slow growth and the ability to watch and wait since my tumors are left frontal lobe and not causing any other issues. He is a hero to me!!!! A wonderful man who instills well deserved confidence thanks to his skill and kindness.

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I was offered gamma at MD Anderson, The neurosurgeon who removed my meningioma in Austin, TX recommended the cyberknife, I had the cyberknife in Austin, TX. The cyberknife procedure was real easy and comfortable for me, I had no side effects nor any sensation of burning it was a positive experience, they were 5 consecutive 1hr. Sessions. I would know in Oct. If it worked or not I am having my MRI then, to see if tumor stayed the same or if it grew.
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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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Hi Peg,
Wow you are going thru a lot of tough decisions and procedures. I greatly admire your positive attitude and sense of humor!! Did you have multiple tumors show up on your MRI at the same time. My sister has 3 new ones in different places. One area could possibly related to her original surgery in 2001, 5cm right temporal lobe. The Doctors she has seen here in Atlanta seem to think getting 3 at one time means they are " aggressive?" Her first one was benign. She has been on anti seizure meds since her first seizure which led to her diagnosis. Thank You!

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@colleenyoung

Hi Nancy and LindaJean,
Thanks for mentioning the possibility of booking a flight through Mayo Clinic that allows you to change flights free of charge should your stay be extended or shortened. You may be interested to know more about Concierge Services at Mayo Clinic. They can help you plan your visit. Read more here:
- Concierge services: Navigating your Mayo Clinic visit https://connect.mayoclinic.org/newsfeed-post/concierge-services-navigating-your-mayo-clinic-visit/

@clockrem12 can help further should you have additional questions.

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Good Evening Colleen,
I am still getting daily reports from brain and nervous system instead of brain. Can you switch me over somehow. My sister's appointment is July 25 at Mayo. Hoping for some answers and encouragement.
Best,
Nancy

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