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Anyone have multiple meningioma brain tumors?

Posted by pegorr @pegorr, Sep 27, 2016

Is anyone here dealing with multiple meningioma brain tumors?

Interested in more discussions like this? Go to the Brain Tumor Support Group.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 18, 2017
In reply to @colleenyoung "Hi Nancy and LindaJean, Thanks for mentioning the possibility of booking a flight through Mayo Clinic..." + (show)
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Hi Nancy and LindaJean,
Thanks for mentioning the possibility of booking a flight through Mayo Clinic that allows you to change flights free of charge should your stay be extended or shortened. You may be interested to know more about Concierge Services at Mayo Clinic. They can help you plan your visit. Read more here:
- Concierge services: Navigating your Mayo Clinic visit https://connect.mayoclinic.org/newsfeed-post/concierge-services-navigating-your-mayo-clinic-visit/

@clockrem12 can help further should you have additional questions.

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Hi Nancy,
Here's what you should do to stop receiving daily digests about the Brain & Nervous System group and to start receiving notifications about the Brain Tumor group.

1. Go to the Group Directory https://connect.mayoclinic.org/groups/
2. Click +Following on the Brain & Nervous System group.
3. Choose "Unfollow. Do not notify me about this anymore." from the drop down choices.
4. Click Update and close the pop-up.
5. Click +Follow on the Brain Tumor group.
6. Choose "Email me when new posts appear and include in my daily digest."
7. Click Update and close the pop-up.

Read more about How to Update Your Notification Settings here https://connect.mayoclinic.org/discussion/tip-how-to-update-your-notification-settings/

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Chelsea L. | @clockrem12 | Jul 20, 2017
In reply to @colleenyoung "Hi Nancy and LindaJean, Thanks for mentioning the possibility of booking a flight through Mayo Clinic..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Hi Nancy and LindaJean,
Thanks for mentioning the possibility of booking a flight through Mayo Clinic that allows you to change flights free of charge should your stay be extended or shortened. You may be interested to know more about Concierge Services at Mayo Clinic. They can help you plan your visit. Read more here:
- Concierge services: Navigating your Mayo Clinic visit https://connect.mayoclinic.org/newsfeed-post/concierge-services-navigating-your-mayo-clinic-visit/

@clockrem12 can help further should you have additional questions.

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@nancye3 I am not sure if you have already reached out to Concierge Services, but we are happy to help you plan for the upcoming appointment on July 25. Give us a call, our advice is complimentary to Mayo Clinic patients and their families: 507-538-8438

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nancye3 | @nancye3 | Jul 20, 2017
In reply to @colleenyoung "Hi Nancy and LindaJean, Thanks for mentioning the possibility of booking a flight through Mayo Clinic..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Hi Nancy and LindaJean,
Thanks for mentioning the possibility of booking a flight through Mayo Clinic that allows you to change flights free of charge should your stay be extended or shortened. You may be interested to know more about Concierge Services at Mayo Clinic. They can help you plan your visit. Read more here:
- Concierge services: Navigating your Mayo Clinic visit https://connect.mayoclinic.org/newsfeed-post/concierge-services-navigating-your-mayo-clinic-visit/

@clockrem12 can help further should you have additional questions.

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Thank You! My sister has that information. Mayo booked her flight and hotel room.

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nancye3 | @nancye3 | Jul 25, 2017
In reply to @barbarabx "Six months ago I was told I have two benign meningiomas near my eyes. Vision in..." + (show)
Profile picture for barbarabx @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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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!!
Thank You,
Nancy

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Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 25, 2017
In reply to @barbarabx "Six months ago I was told I have two benign meningiomas near my eyes. Vision in..." + (show)
Profile picture for barbarabx @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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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.

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Lindajean | @lindajean | Jul 25, 2017
In reply to @barbarabx "Six months ago I was told I have two benign meningiomas near my eyes. Vision in..." + (show)
Profile picture for barbarabx @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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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!!!

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nancye3 | @nancye3 | Jul 26, 2017
In reply to @colleenyoung "Welcome to Connect, Peg. I moved your message to the Brain Tumor group so that you..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

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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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!!
Nancy

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pegorr | @pegorr | Jul 26, 2017
In reply to @colleenyoung "Welcome to Connect, Peg. I moved your message to the Brain Tumor group so that you..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

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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Sending her all the best! All for 1 and 1 for all. Tough #braintumorwarriors. love,peg

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nancye3 | @nancye3 | Jul 26, 2017
In reply to @colleenyoung "Welcome to Connect, Peg. I moved your message to the Brain Tumor group so that you..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

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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Thanks Peg!!
Your spirit inspires!
Best,
Nance

REPLY
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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 26, 2017
In reply to @colleenyoung "Welcome to Connect, Peg. I moved your message to the Brain Tumor group so that you..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

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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@nancye3 I'm so glad to hear that all went well and that she feels good about her initial appointment. Will you keep us posted after she returns on 8/9?

Teresa

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