Mayo Clinic Connect
Is anyone here dealing with multiple meningioma brain tumors?
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, Yep I have one tumor we have been “watchfully waiting” for over 10 years now ,and with this years scan I have a second that is nearly the same size as the first already. What’s up with you? Thanks for the connect Colleen! Always good to learn from each other 🙂
Liked by Colleen Young, Connect Director
Hi, 6 tumors, two removed surgically, 2 cyber-knife radiated because one is laying up against my brain stem and one laying on my optic nerve. 4 tumors have been on the right side, now there are two on the left, dang. Anyway getting set for my MRI this month and then will decide whether or not to hit them with the Gamma Knife before they are too large. It would be nice to be growing diamonds or pearls instead of tumors:-) I have a fab surgeon here in Montana but do the radiation at Swedish Hosp. in Seattle. Doing pretty good for the “condition my condition is in.” peg p.s. I still can’t sleep on the right side of my head from the tumor removals. Pressure seems to build up and hurt like crazy.
OK, you have me beat-ha! Mine are both left frontal lobe….sometimes I swear the area above my eyebrow under my skull hurts ( which is where they are) but then I think I MUST be imagining the cause/effect. I had a bad horse accident 32 years ago before MRI was available where I lived in Colorado, so had LOTS of head xrays…maybe one of the causes compounded with being a farmer in the days before we realized weed spray was POISON. My dad was a Doc in Iowa and had me go to Mayo from Colorado when the first tumor was found and Dr. O’Neil in Neurology there has been fantastic over the years by having me switch to totally organic food, no hormones for menopause and no soy in food products or any of the other things that act like estrogen including weed chemicals.to not “feed the tumors”. He has had me watch and wait for I guess going on 12 years for the first one and it hasn’t grown much. I DID end up at Mayo for highly malignant triple negative breast cancer about 4 years ago, and had a lumpectomy there and then continued with Chemo and radiation at home in Colorado. The new brain tumor showed up a year after my treatment for that ended….so back to scans more frequently to see how it acts. Funny that the neurological symptoms that correspond to growth in my brain tumors are similar to the ones I already experience due to my broken neck/bad fusions ( did NOT have that done at Mayo…darn, I let an idiot in CO do it) and I have constant headaches and neck pain from the pressure on my spinal cord at C3 level compressing the cord and right hand / arm weakness . I have been very grateful to my Mayo team for their conservative approaches. Funny that you say you have adapted your sleep position…I have had to also, and it is a tough change since we all have our favorite old ways, but then the pain makes us change! One thing I have found is that it is VERY beneficial to share with others that have serious health challenges, great to share info on what HAS worked with others 🙂 You sound like YOU have a great sense of humor to help you through all the challenges too!!!! Let us know how your scan goes, and my hopes are with you that you don’t need to do more surgery yet!!
Liked by Melissa Kimbrel-James
Pretty sure we’re both the rarest of ladies:-) I get your head hurting, I told my doc I had tumors on the left because of the pain in my eye/and head, and he said, “no you don’t”, I said, “yes I do”, anyway MRI revealed the additional 2 tumors and you know what he said, thank you for noticing that! Yikes! I love his surgical skills but he’s lacking in a few others. It’s really lovely to talk to someone who understands and I hope you feel the same. I haven’t had breast cancer but I did have tumors removed from one breast, and I have a spot on one lung. Isn’t it just amazing how wonderfully we were made and how much we can endure. I wish you the best and would love to keep in touch. Thank you for sharing. peg
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.
Liked by EES1
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
Hello Colleen. It’s nice to meet you. Thank you for your quick reply. No, I haven’t had surgery for my meningiomas. I was scheduled for surgery, but a gyn problem came along and I need to take care of that first. I’ll turn 76 later this month. I live alone. I’m not frightened about surgery. I just don’t want to come out worse than what I am. I feel I have a good neurosurgeon. Now I’ll introduce myself to Peg and Linda. I’ll remain in touch with you. Thanks, again. BarbaraBx.
My sister had only one near her optic nerve and the best place to go is Mayo Clinic. The doctor that did her surgery was Van Gompel. He probably performs more of these in the optic area than anyone in the US! I am her RN sister and couldn’t have been more comfortable or impressed with her care. Get his opinion before you do anything. My sister is 74 and she had surgery 6 months ago and does not need to return to Mayo for a year.
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
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
Liked by pegorr, EES1
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.
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