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pegorr (@pegorr)

multiple meningioma brain tumors

Brain Tumor | Last Active: Nov 2, 2019 | Replies (116)

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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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Replies to "Six months ago I was told I have two benign meningiomas near my eyes. Vision in..."

Hi Barbara, welcome to Connect.
I moved your message to this discussion so that you can meet @pegorr and @lindajean, both who have multiple meningiomas and multiple surgeries. I’m sure they can understand your fears.

Barbara, until now has your treatment been “watch and wait” or have you already had a previous surgery?

Welcome Barbara, and I’m so sorry to hear about your vision loss. I think it’s very important for you and your neurosurgeon to talk this over in great detail, pros and possible cons. and a second opinion never hurts. I also think everything over carefully myself and see how I feel each way, surgery or no surgery, radiation or no radiation. I think we’re pretty tuned in to our feelings, and whether we feel confident or apprehensive. I actually have 2 surgeons and radiologists I speak with, one here in Montana, and one in Seattle,before my husband and I make the final decision. I did have a large tumor partially removed behind my right eye. I had double vision, and wore a patch for about 3 months, and then one morning I woke up and my vision was fine.I then followed up about 2 years later with cyber-knife radiation to stop residual tumor growth. These are difficult decisions to make and I wish you the very best. All for 1 and 1 for all, #braintumorwarriors. hugs, peg

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

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.

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?

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.

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

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

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

Hello lovely Ladies,I feel like an investigative reporter. Thank god for Mayo Clinic having I can this wonderful connection where people can discuss this frustrating tumor and the many investigative methods we have all gone through. My name is Ellen and I can assure you that I am writing a book to help other patients deal with this tumor type such as we have!!! I have had two brain surgeries, have used the number one brain surgeons in Los Angeles and both times my so called meningioma was called, benign. Each time it has come back from two to five tumors; from grade1 to grade2. I have had radiation therapy (6wks) and told that I had an 85% chance that the tumor would shrink and would not come back. I am waiting for my results at the end of June. I am told the only way to save myself is with surgery. The last surgery I had affected my left side(hand) no feeling. This was from a stroke I had during surgery.I am lucky that this was the only effect from a a-typical benign meningioma having gone from grade 1 to 2. I have read every doctor study, called all universities, seen many neurologists and honestly getting contradictions which I am not at liberty to discuss. The only true facts I have discovered: This is based on a woman’s hormones and apparently we are ingesting more hormones from our food. Also that woman who have had t hyroid cancer and used the incorrect radiation treatment following their cancer have our tumors. I am still investigating the source of these tumors. Please stay strong ladies, this disease is not for the weak. A big thank you to Mayo Clinic whom I will be having a consultation with soon. I have been searching for a site that brings meningioma patients together because we definitely have to fnd a way to get rid of this tumor, and believe me yearly brain surgery is not the answer to a quality life.