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nancye3
@nancye3

Posts: 54
Joined: Jul 04, 2017

Multiple Meningiomas

Posted by @nancye3, Jul 7, 2017

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.

REPLY

Welcome to Connect, @nancye3.

We have a few members in the Connect community who have experience with meningiomas personally or with family members, and I’m guessing it’s likely one of them will know Dr. O’Neill or Dr. Meyer. Please meet @jackieerickson , @07ram, @pegorr , @lindajean, and @pennie . Others who may be able to give you personal information with these doctors are @robinlynn , @audrapopp , @jkenser and @lynda1992.

Meanwhile, you might want to take a look at Dr. Meyer’s Mayo Clinic bio, if you haven’t already, here:http://mayocl.in/2sXrqJp. Dr. O’Neill’s profile is located here: http://mayocl.in/2trNT4Z. I think these will give you lots of good information on their backgrounds, and you can watch a video of Dr. Meyer on his profile, as well.

Did your sister experience any more seizures after her 2001 surgery?

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.

@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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Thanks so much for your reply. My sister had some complications with her surgery in 2001, caused by a hospital induced infection. She had to have 2 more surgeries as a result and had a metal bone flap inserted. One of her new tumors is very close to it, another is close to her eye so is inoperable. One neurosurgeon suggested she immediately have Gamma Knife, the other suggested Cyber Knife and possibly surgery. We both have been in communication with Colleen on this site. She has been trying to decide between Johns Hopkins or Mayo. We live in Atlanta so neither are close by. Do you live near Mayo Clinic? If not, how are you able to go for all the follow up appointments. Your post has helped calm a lot of worry and anxiety!! I think watch and wait sounds like an excellent idea.
Thanks Again,
Nancy

@lisalucier

Welcome to Connect, @nancye3.

We have a few members in the Connect community who have experience with meningiomas personally or with family members, and I’m guessing it’s likely one of them will know Dr. O’Neill or Dr. Meyer. Please meet @jackieerickson , @07ram, @pegorr , @lindajean, and @pennie . Others who may be able to give you personal information with these doctors are @robinlynn , @audrapopp , @jkenser and @lynda1992.

Meanwhile, you might want to take a look at Dr. Meyer’s Mayo Clinic bio, if you haven’t already, here:http://mayocl.in/2sXrqJp. Dr. O’Neill’s profile is located here: http://mayocl.in/2trNT4Z. I think these will give you lots of good information on their backgrounds, and you can watch a video of Dr. Meyer on his profile, as well.

Did your sister experience any more seizures after her 2001 surgery?

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Thank You for your reply. My sister has been on anti seizure meds since her surgery in 2001. She had 2 seizures after her surgery but has not had another since. She is receiving conflicting information from two different neurosurgeons here as to a treatment plan. That is why she wants to seek a 3rd opinion from a top medical center with lots of experience with multiple meningiomas. She has been trying to decide between Mayo and Johns Hopkins. She called and made an appointment at Mayo on July 26. She is supposed to see Dr. O’Neill and Dr Meyer. Her tumors are small at this time but one Doctor thought she should have Gamma Knife right away, the other Cyber Knife or possibly wait 4 months to see if they have grown. He is the surgeon who operated on her in 2001. He also suggested surgery on one of the new tumors behind her ear to make sure it is benign. So needless to say she is very confused as to what to do. I am hoping her trip to Mayo will provide some much needed clarity on a course of treatment.
Thanks Again,
Nancy

@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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Nancy, this is 07ram. I had a type II Meningioma removed in4/2015. The neurosurgeon overlooked a small piece of the tumor that is now lodged behind my right eye very close to my optic nerve. I had cyberknife radiation, 5 consecutive sessions on jan 2016. My surgery and cyberknife were done in Austin, tx. But I saw another neurosurgeon in houston tx. At md anderson, becuse my neurosurgeon said he wouldnt touch my remant tumor cause it was too close to my optic nerve. The neurosurgeon at md anderspn is Franco DeMonte. He said he would do my surgery, I told him that I didnt want another craneotomy, he told me that he wouldnt do a craneotomy, that he would perform the surgery through the side of my eye, but that he thinks that the surgery wasnt necessary now, that we could wait and see if the cyberknife radiation was helpful and watch and see. I am supposed to have mri this coming oct.i know your sister lives in Georgia, but she could consider md anderson with dr. DeMonte. Hope this helps
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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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There is actually a special Mayo # with the airlines that I got…Colleen could probably give it to you, it is in my file somewhere. It allowed for changes to reservations with no change fee if appointments necessitaed staying longer sometimes. I ended up back at Mayo for highly malignent breast cancer ( NOT related to my brain tumors) and the oncology unit for that kept Dr. O’Neil in the loop too. That has been 5 years ago, and now I am only having scans every so many years unless I start having symptoms like seizures etc. I have been told that it isn’t good to have TOO much contrast over long term. I lived in Colorado for all this and would fly to Mayo at the beginning, but later I had my scans done local and then sent them to Dr. O’Neil for review. VERY handy, and I still had Dr. O’Neil’s expertise. My Dad was a Dr. in Iowa and sent all his high risk patients to Mayo, so he would meet me at Mayo and sit in on all appointments and was VERY impressed with Dr. O’Neil!!!!

@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!

@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. 

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.

@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?

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.

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.

@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

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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