multiple meningioma brain tumors

Posted by pegorr @pegorr, Sep 27, 2016

Is anyone here dealing with multiple meningioma brain tumors?

@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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@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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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. 

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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 @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

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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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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

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