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.

Hi Karen. Thanks for being kind enough to reply. I can see my tumors on the screen, so I know they’re there. I honestly feel that even if I wait, eventually they’ll have to come out. I’m nearly 76. If I knew I had only a few more years to live, I’d hold out. I have a good neurosurgeon at Mt Sinal Hosp. He does about 3-4 of these surgeries a week for last 15 years. But I’ll keep Dr Van Gompel’s name handy. I’m so glad your sister did well with her surgery. Bless you both. I’ll keep you advised. BarbaraBx

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@barbarabx

Six months ago I was told I have two benign meningiomas near my eyes. Vision in one eye is already almost gone (over a period of about six years). I was advised to have surgery to remove the tumors. I’m very worried that I may come out worse than when I went in. I don’t know what to do.

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Hi Peg. Thanks for taking the time to reply. I’ll be meeting with my neurosurgeon in a few weeks and I’ll certainly have a list of questions for him. I do feel that down the road these tumors will have to come out, so why not do it now and get it over with. I’m nearly 76 and basically healthy otherwise. I’m really sorry you had to endure what you endured. But I’m so very glad your vision is back to normal. I wish you only the best. I’ll be in touch. BarbaraBx

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@barbarabx

Six months ago I was told I have two benign meningiomas near my eyes. Vision in one eye is already almost gone (over a period of about six years). I was advised to have surgery to remove the tumors. I’m very worried that I may come out worse than when I went in. I don’t know what to do.

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Read the research being done at Rush Medical Center, Chicago. They are fighting head tumors by putting a fiberglass injector into the tumor and explosively shooting electricity into the tumor and reducing it to white trash. Explosion goes to tumor not to any other cells. This was reported in their news report Nov. 14, 2016. Sorry not to recall the name of the woman doctor in charge of the project. Suggest you call them. I’ll get back to my Facebook to bring back the newsletter.colleenyoung has my name post, but I’ve long ago lost it.

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@barbarabx

Six months ago I was told I have two benign meningiomas near my eyes. Vision in one eye is already almost gone (over a period of about six years). I was advised to have surgery to remove the tumors. I’m very worried that I may come out worse than when I went in. I don’t know what to do.

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Welcome back Eleanor! I was thinking about you and wondering how you are doing.
Please note that I removed your private phone number from your message above. We recommend not sharing personal contact information on the public forum. Instead, it is safer to use the private messaging function.

Are you a candidate for the treatment being studied at Rush Medical Center?

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@barbarabx

Six months ago I was told I have two benign meningiomas near my eyes. Vision in one eye is already almost gone (over a period of about six years). I was advised to have surgery to remove the tumors. I’m very worried that I may come out worse than when I went in. I don’t know what to do.

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Nice to hear from you Colleen. Correct, no telephone #. No I’m not a part of this effort. I did the 2nd reference after I had another MRI evaluated by a doctor specialist at Rush University Medical Center twice after a period of time exceeding 1year. Both times this MD pleaded with me to do nothing. Last saw him 6/28/16 and he told me not to have another MRI and not to contact him until I have some evidence of noticeable change. The MRI’s show slow growth. I don’t know if he knows of this research, I learned of it this by reading the Rush newsletter of today. Research is at Rush’s Brain and Neck speciality. Work looks to have promise as only tumor is destroyed, not OK cells. Trying to keep aware of procedures. Too many of the connect participants have multiple surgeries and radiations; not for me as I fear any surgery. Have not had my knees worked on either as my fear exceeds the debilitation and pain. I’ll inform my local physician who might have a talk with my Rush MD. Who might want to expand on this as doc to doc.
Thought Barbara would profit from this information even tho as it’s in its early days.
Thanks for remembering me as I too would enjoy having a cup of tea(green) with you and discussing what Mayo’s non-surgical successes are.

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@barbarabx

Hi Karen. Thanks for being kind enough to reply. I can see my tumors on the screen, so I know they’re there. I honestly feel that even if I wait, eventually they’ll have to come out. I’m nearly 76. If I knew I had only a few more years to live, I’d hold out. I have a good neurosurgeon at Mt Sinal Hosp. He does about 3-4 of these surgeries a week for last 15 years. But I’ll keep Dr Van Gompel’s name handy. I’m so glad your sister did well with her surgery. Bless you both. I’ll keep you advised. BarbaraBx

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Your doctor sounds very experienced as well. What a blessing. I always pray daily for everyone facing physical issues so you would be included even tho I don’t know you. Patience,trust and faith will get you through this.

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@barbarabx

Six months ago I was told I have two benign meningiomas near my eyes. Vision in one eye is already almost gone (over a period of about six years). I was advised to have surgery to remove the tumors. I’m very worried that I may come out worse than when I went in. I don’t know what to do.

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Hello Eleanor. I’m new to the discussion group. I just read your reply re the research being done at Rush Medical Center re brain tumors. It certainly sounds promising. My neurosurgeon feels my two tumors should come out. One eye has lost most of its vision. Tumor is now pressing on optic nerve of good eye. We don’t want that eye to go bad, too. I only worry about how I’ll be after surgery. Better? Worse? I’ve talked to several friends about what I should do. Most say do the surgery. Seeing my doctor in a few weeks and I’ll have to really discuss the pros and cons of surgery. Never dreamed this would happen to me. Now I see that I’m not alone. I appreciate your listening. I wish you only the best. I’ll keep you posted. BarbaraBx

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@barbarabx

Six months ago I was told I have two benign meningiomas near my eyes. Vision in one eye is already almost gone (over a period of about six years). I was advised to have surgery to remove the tumors. I’m very worried that I may come out worse than when I went in. I don’t know what to do.

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Barbra, my neurosurgen does not want me to do anything.just let it to slowly grow. My heart goes out to you as my instinct is fear of sight problems. Does Mayo MD consider studying Rush Medicals new ZAP as a possibility for you? John’s Hopkins ‘s is working on drug delivery to the tumor. Perhaps these are too young to consider. I keep looking at the future as I have time. Mayo is doing what is currently experienced best effort. Hope I haven’t muddied your thinking. My prayers are with you. Best wishes for successfully completeing thisMedical procedure.EleanorSent from Yahoo Mail on Android

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@barbarabx

Six months ago I was told I have two benign meningiomas near my eyes. Vision in one eye is already almost gone (over a period of about six years). I was advised to have surgery to remove the tumors. I’m very worried that I may come out worse than when I went in. I don’t know what to do.

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Eleanor, my neurosurgeon is connected with Mt Sinai Hosp in Manhattan. I feel he’s a competent doctor. I can see the tumors, so I know they’re there. After seeing several eye specialists over several years, a smart young lady optic nerve specialist suggested an MRI. Bingo! Finally, I had the answer as to why I was losing my vision. She sent me to my neurosurgeon. Surprisingly, I just found out that two of my friends also have meningiomas. Their tumors are in good places, so they’re just watching them, like you. Good luck to you. I sincerely hope you never need to do anything except watch your tumor. I’ll be sure to keep you updated. BarbaraBx

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Hi, I have a Meningiomas tumor on right back side of my head near brain stem that is dumbell shape toward neck it has most of life threatening nerves in it. Have lost hearing on right side. Drs in Switzerland told me surgery too dangerous due location and nerves, radiation not good either they thought more good tissue would be damaged. Suggested a embolization of the brain tumor to stop blood feeding it. Had this procedure done and tumor shrunk by 30% and has stayed stable for last 3 years. Now I watch and wait. Every year I need a MRI with dye to control its growth and development. I now live in Ft. Lauderdale and need to find a DR that can continue my care including being capable and with a lot of experience wtih brain embolizations as a treatment and not pre operative. I am also open to anything new but do not want surgery. Can anyone help me to find the most qualified and experienced Dr in the USA. I need to find a DR in USA since I live her permanently now. Thank you for any help and suggestions.

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