multiple meningioma brain tumors

Posted by pegorr @pegorr, Sep 27, 2016

Is anyone here dealing with multiple meningioma brain tumors?

@wilda32

Meningiomas. How can we prevent recurring in the brain. How can they be treated in the brain stem?

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Hi @wilda32, welcome to Connect.
I moved your message to this existing thread about multiple meningiomas in the Brain Tumor group. Here you’ll meet @pegorr @lindajean @eleanor1931seminara1931 @pennie @lindalb @barbarabx @elewis and others who are dealing with recurrent meningiomas.

You asked about preventing recurring meningiomas. According to the article in the British Journal of Medicine http://bestpractice.bmj.com/best-practice/monograph/730/prevention/primary.html “no preventative strategies have been identified.” Research continues into how regular use of cell phones may be a contributing factor, but “at present, little evidence exists for an association between mobile-phone use and meningiomas …”

I’ll be interested to hear what others have been told about prevention. Wilda, you mention the brain stem? Have your tumors occurred in the brain stem?

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Have had recurring meningiomas for several years and now have occured in the brain stem

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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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@nancye3

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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Hi Nancy, welcome to Connect.
I moved your message to the Brain Tumor group to a discussion about multiple meningiomas. Like your sister, the members talking in this discussion group have all had multiple tumors. They’ve been treated at centers across the country. I recommend reading through the past messages to learn more.

You asked about Gamma Knife and CyberKnife. Often people use these 2 terms interchangeably however, they are two different technologies used to deliver stereotactic radiosurgery. Stereotactic radiosurgery (SRS) is a type of treatment that uses precise beams of radiation to destroy tumors of the brain, head, and neck, and to treat other neurological disorders. I like this simple comparison of the 2 technologies from the Valley Health System https://www.valleygammaknife.com/the-technology/gamma-knife-versus-cyberknife

Here’s more information about brain stereotactic radiosurgery from Mayo Clinic http://www.mayoclinic.org/tests-procedures/brain-stereotactic-radiosurgery/home/ovc-20215376

@pegorr has had both types of SRS and may be able to add more information from first-hand experience.

Nancy, if you sister would like to inquire about a third opinion from Mayo Clinic use this link http://mayocl.in/1mtmR63 You’ll find the contact information for each of the locations and an online form. Mayo experts can help your sister navigate the healthcare journey, answer questions and guide her through the treatment plan. The Mayo Brain Tumor Clinic offers appointments within 48 hours. If she needs to be seen quickly, be sure to mention the Brain Tumor 48-access program.

Side effects after brain surgery are different for everyone. Fatigue is a big one. You might appreciate reading and joining the conversation here:
Life after Brain surgery https://connect.mayoclinic.org/discussion/life-after-brain-surgery/

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Hello @nancye3

Welcome to Mayo Clinic Connect. We are happy to have you as part of our online patient support group. Your sister is very fortunate to have someone looking out for her and trying to find some answers for this new diagnosis. I would like to connect you with some other members who are dealing with this type of diagnosis. Some of our previous conversations about this matter can be found on this page. Perhaps @pegorr @lindajean @eleanor1931seminara1931 @pennie @lindalb @barbarabx @elewis will join in this discussion with you. If you (and your sister) are OK sharing some more information. What location in her brain were the benign meningeomas found? What symptoms was she having that led to this diagnosis? Teresa

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Hi, thank you for responding ! The 3 most recent ones are on her left side, one over right eye socket , not positive about 3rd. I will ask her. Her scan in 2011 was clear. If they were there they were barely perceptible. Now one is size of nickel, other smaller. She lost her sense of smell during previous surgery in 2001. It was in frontal lobe, right side. She had to have 2 more surgeries and a bone flap inserted due to a hospital induced infection. She is very worried about future side effects of radiation.

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@nancye3

Hi, thank you for responding ! The 3 most recent ones are on her left side, one over right eye socket , not positive about 3rd. I will ask her. Her scan in 2011 was clear. If they were there they were barely perceptible. Now one is size of nickel, other smaller. She lost her sense of smell during previous surgery in 2001. It was in frontal lobe, right side. She had to have 2 more surgeries and a bone flap inserted due to a hospital induced infection. She is very worried about future side effects of radiation.

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She also has had Vertigo for a couple of months but one of the Doctors she saw dies not think it is related. But that is why she had the MRI to rule out a tumor.

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@nancye3

Hi, thank you for responding ! The 3 most recent ones are on her left side, one over right eye socket , not positive about 3rd. I will ask her. Her scan in 2011 was clear. If they were there they were barely perceptible. Now one is size of nickel, other smaller. She lost her sense of smell during previous surgery in 2001. It was in frontal lobe, right side. She had to have 2 more surgeries and a bone flap inserted due to a hospital induced infection. She is very worried about future side effects of radiation.

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@nancye3 We appreciate the additional information. You did not mention headaches just vertigo so I’m assuming that was her only symptom. Has she discussed her concerns about radiation with her doctor? Teresa

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@nancye3

Hi, thank you for responding ! The 3 most recent ones are on her left side, one over right eye socket , not positive about 3rd. I will ask her. Her scan in 2011 was clear. If they were there they were barely perceptible. Now one is size of nickel, other smaller. She lost her sense of smell during previous surgery in 2001. It was in frontal lobe, right side. She had to have 2 more surgeries and a bone flap inserted due to a hospital induced infection. She is very worried about future side effects of radiation.

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Hi Teresa,
She does get migraines from time to time but has had them for many years. The Vertigo usually takes one Doctor appointment and treatment and she is over it the next day. She has had 3 or 4 treatments but still has the Vertigo. One Neurosurgeon thought she needed Gamma Knife soon, the other thought she could get another MRI in 4 months to see if they have grown at all. So she would like a 3rd opinion. One surgeon does the Gamma Knife procedure, the other Cyber Knife. She knows what all the possible side effects of radiation are. She is worried that it could cause seizures which is how she found out about the first tumor. She is on anti seizure meds and has been since her surgery. She is also worried about cognitive problems down the road and another tumor forming as a result of the radiation.

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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

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@nancye3

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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Thank You Colleen for all the helpful information and links. My sister would like a 3rd opinion. Probably in person, however she may want to send her most recent MRI results. One neurosurgeon thought she should have Gamma Knife right away and the other felt she could wait and watch, for now anyway. He felt she should be tested again in 4 months. He does not do the Gamma Knife procedure. He uses Cyber Knife. I have read about both, pros and cons. I think I mentioned that my sister had surgery in 2001 for a 5cm meningioma. She lost her sense of smell as a result of that surgery. She had to have 2 more surgeries as a result of a hospital induced infection. Can you tell me approximately how many Gamma Knife and Cyber Knife procedures Mayo Clinic does in a year? Or can you refer me to someone who does?Thank You,Nancy

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@pegorr

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

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Hi Peg,Thanks so much for your response. My sister will be joining soon and I'm sure she would love to communicate with you. She had surgery in 2001 to remove a 5 cm meningioma. She lost her sense of smell as a result. She initially had a seizure which is how she was diagnosed. She has been on anti seizure meds ever since. She had an MRI a couple of weeks ago and has seen 2 neurosurgeons here in Atlanta. She has 3 meningiomas.  One does the Gamma Knife, the other Cyber Knife. One thought she should have Gamma Knife soon, the other said she could wait and have another MRI in 4 months. She is so worried that the radiation could bring on a seizure or have other nasty side effects down the road. Maybe 10 years from now. Where did you have the Cyber Knife procedure? She is thinking maybe she should go to Mayo Clinic or Johns Hopkins or some major medical center where they have a lot of experience with both procedures. Have you had any seizures? Do you know anyone who has been treated at either medical center. Thanks so much for your response. So glad you have not had bad side effects from the radiation. Have the tumors shrunk in size at all since the radiation? Sorry, so many questions!!Thanks You,Nancy

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@nancye3

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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You’re most welcome. Indeed a third opinion at Mayo Clinic would be done in person, but sending diagnostic test results can be helpful for review before you arrive. You ask very good questions re how many procedures are done in a year, etc. That is data that I don’t have today being July 4. I’ll see what I can find out. However, if you call Mayo Clinic and ask for the Brain Tumor 48-access program, they should be able to give you that information. http://mayocl.in/1mtmR63

Of all the senses to lose, I think most people would consider the loss of smell to be inconsequential, but it is significant isn’t it? I think we don’t know what we have until it is gone. We use our sense of smell for so much — to sense danger, pleasure, trigger memory, and for taste to name a few.

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Nancy,
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/.

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@colleenyoung

Nancy,
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/.

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Colleen, I am forwarding all information to my sister Jill. She will be signed up today hopefully. If she seeks a 3rd opinion at Mayo Clinic, which location would be best.
Thanks,
Nancy

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