Mayo Clinic Connect
Is anyone here dealing with multiple meningioma brain tumors?
Hello, I am new to the group and would really appreciate some advice. My sister has been diagnosed with 3 benign meningeomas. She had surgery in 2001 for one that was 5 cm. This is the first time since then that there are new ones, possibly one recurrence. She has 2 opinions so far. One Doc suggested Gamma Knife, the other Cyber Knife. She would like to seek a 3rd opinion at a Major Hospital, Mayo Clinic or John Hopkins. She does not know which to go to or which type of radiation she should have. Her tumors are fairly small at this time. Any advice or similar experiences would be greatly appreciated. She is very worried about side effects of radiation. Thank You
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Thanks for even responding on a Holiday!! Happy 4th of July!! When my sister had her surgery in 2001, she was at risk to lose her eye sight, so I was relieved it was her sense of smell instead. I had so hoped this was all behind her. She will definitely follow the link you sent and ask all her questions.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
Hi @nancye3 . My name is Peg and I have multiple meni’s. I have had surgeries and radiation. Both have turned out well. I am 3 yrs past my cyberknife radiation. I had two areas radiated, a tumor lying next to my brain stem and one behind my right eye, which has also had surgery. My side effects from radiation have been minimal,a very small hair loss,fatigue & a red meat craving for 2 weeks after radiation:-) assuming I needed some iron, and once in a while a seemingly brain fog, but it’s hard to determine what exactly that is from, age, new tumors on left side, etc. but I don’t think the radiation. I felt safer after the radiation, since it’s halts the tumor growth. I’m not sure how it is determined which type to use, gamma or cyber, but I think it may have to do with the size of the tumor. I believe if the tumors are too large surgery may be the only option. The cyber is painless, & I have a pretty cool post radiation mask I’m not sure what to do with:-) I am planning cyber-knife radiation again in November to deal with the left side tumors and actually looking forward to it. I like to take care of business and move on with all the joys of life. Wishing your sister all the best. Ask me anything you wish. peg
Hi @nancye3, I had the cyberknife procedure at Swedish Hospital in Seattle but I have decided to change locations for my next cyberknife and/or gammaknife at a center in Spokane, mainly because the Neurology Dept. at Swedish is having so many problems. I don’t know of anyone who has gone to Mayo or Johns but I believe they are top-rated hospitals so I wouldn’t hesitate if it became necessary. My surgeries were done here in Montana by an amazing neuro. Dr. Carter Beck. I had seizures, vertigo, etc. before my tumor diagnosis but I wasn’t aware they were seizures. I thought I might have the flu, was getting old:-),etc. and basically found excuses for the way I was feeling. I did use to say to my kids, “don’t worry, it’s just the brain tumors”, & they would say, “it’s not a tumor”.
I have had a couple seizures since my radiation brought on by extreme stress,however, I take no seizure medication at this time. I actually take no meds at all, and if I have too, I take a child’s portion. My tumors have not shrunk, nor have they grown, so radiation has done it’s job. I had planned my radiation in Seattle for this month,July, but Dr. Beck asked me to wait because he wants to make sure both suspected tumors are indeed that and not an AVM and a tumor. He did not want me to get radiation too soon and risk having a stroke, which is why I’m waiting until November. The radiologist in Seattle had said I could choose between cyber or gamma but I had told her I would rather have cyber to avoid the halo thing they have to screw to your head for gamma. For cyber, a mask is made, so it’s very non-invasive, but, if she had given me a grand reason for gamma, I would have followed her recommendation. I do, with my husband and family weigh all recommendations, do some critical thinking, and then make a decision. I feel very positive and treasure every day. Sending lots of hope and love to your sister & family. peg
Liked by Teresa, Volunteer Mentor
I’d like share this post from @audrapopp on Connect http://mayocl.in/2rX8ue2. Audra may also be able to share more information about Gamma knife surgery to add to the information you’re getting from @pegorr. Peg, did you have both Cyberknife and Gamma knife procedures?
Nancy, not to complicate matters, but I wonder if proton beam therapy might be an option. Audra shares her experience with proton beam therapy here: http://sharing.mayoclinic.org/2016/04/01/a-new-weapon-in-the-arsenal-for-patient-with-stubborn-cancer/.
Hi @colleenyoung , so far I have only had the cyberknife experience. The radiologist in Seattle had said I could choose either one for this next round of radiation, & I would have chosen Cyberknife because of the pressure/pain I already have in my head from my surgeries. I won’t be going back to Seattle, but will probably do radiation in Spokane some time in November. They can decide which would be most beneficial. One of my new tumors on the left is getting close to my optic nerve, and on my right side my tumor has put a bend in my optic nerve so I’m anxious for treatment before it endangers my eyesight. All of us with brain tumors fight an uphill battle,but we can do it, and I believe in ALL for ONE, and ONE for ALL, and even with #braintumors, it’s a beautiful life. peg
Thank You!! Best of luck with your next procedure. Your attitude is inspiring!!
Good Afternoon Colleen,
My sister Jill has registered jill333. Can you please direct her to the correct groups and discussions.
Hi @jill333, welcome to Connect.
We’ve been introduced to you by your sister, @nancye3. Thank you for following along with this conversation. I invite you to join in as well.
First, I recommend that you + Follow the Brain Tumor group https://connect.mayoclinic.org/group/brain-tumor-support-group/
Nancy and Jill,
To answer some of your questions about brain tumor care at Mayo Clinic, here’s some information that you may have already seen from our website: http://mayocl.in/2uKVOYV
“Mayo Clinic’s world-renowned brain tumor specialists work together with other specialists to deliver the most appropriate treatment for each person. Your brain tumor treatment team may involve neuroradiologists, neuropathologists, neurosurgeons, medical oncologists, radiation oncologists, neurologists, rehabilitation specialists and other professionals as needed.”
The teamwork at Mayo includes working as a team across all 3 campuses in Phoenix, Arizona; Jacksonville, Florida and Rochester, Minnesota. Which campus to choose depends on personal preference, convenience of location as well as the availability of appointments and specialized equipment. For Stereotactic Radiosurgery you will likely be recommended to go to Rochester, Minnesota.
Dr. Pollack (http://mayocl.in/2sH9XK8) and Dr. Link (http://mayocl.in/2tNdiX6) are our leading experts in stereotactic radiosurgery.
That’s a lot of information. Please keep asking questions until you get answers. The members of Connect are listening.
Thanks for clarifying, Peg. I can imagine that you’re anxious about the surgery close to the optic nerve. I see you’ve connected with @barbarabx @kareniowa who shared their experiences with brain tumors close to the optic nerve.
I hope the sun is shining as brightly where you are today as it is where I am. It’s a beautiful day.
Liked by Teresa, Volunteer Mentor, pegorr
@pegorr I do like your phrase “I do…..weigh all recommendations, do some critical thinking, and then make a decision.” That is such a great way to handle health problems – it puts the control back in your hands and provides you with options. Teresa
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?
Wow you are going thru a lot of tough decisions and procedures. I greatly admire your positive attitude and sense of humor!! Did you have multiple tumors show up on your MRI at the same time. My sister has 3 new ones in different places. One area could possibly related to her original surgery in 2001, 5cm right temporal lobe. The Doctors she has seen here in Atlanta seem to think getting 3 at one time means they are ” aggressive?” Her first one was benign. She has been on anti seizure meds since her first seizure which led to her diagnosis. Thank You!
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.
Good Evening! Thanks for all the useful information. How did your MRI go the end of June? Did your tumors shrink at all. My sister has an appointment tomorrow morning with Dr O’Neill at Mayo. She flew there tonight from Atlanta. She has seen 2 neurosurgeons here. One recommended Cyber Knife, the other Gamma Knife. She had a 5cm meningioma surgically removed in 2001. Her most recent MRI shows 3 new tumors. One near optic nerve on left, other 2 on right. She is very worried about long term affects of Radiation but really does not want to go thru surgery again.
Hope you had good results!!
We’ll be thinking of you and your sister tomorrow, Nancy. Best of luck to her. Please keep us posted on what she finds out.
I am so happy she is there at Mayo. I know firsthand how wonderful Dr. O’Neil is since he has walked me through 10++ years of living with my left frontal meningiomas. I indeed trust him with my life and follow everything he tells me. It is SO refreshing not to have to second guess all those second rate Docs that just scare a person into reacting and want to immediately set you up for surgery!! Best of luck to your sister @nancye3 . She is in awesome hands!!!
Liked by Colleen Young, Connect Director, Lisa Lucier
I just want to thank everyone for your well wishes and support. My sister met with Dr. O’Neill today, and is having another MRI. He wants her to see 2 more Doctors who are both on vacation right now. She plans to fly back to Rochester August 9th. Wish she could have seen all 3 while she is there. So I don’t have any news yet. I am glad she is there and am remaining hopeful!!
Liked by Teresa, Volunteer Mentor, Lisa Lucier
Sending her all the best! All for 1 and 1 for all. Tough #braintumorwarriors. love,peg
Your spirit inspires!
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