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Multiple Meningiomas

Brain Tumor | Last Active: Sep 2, 2023 | Replies (20)

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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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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

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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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!!!!

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!

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

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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