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Newly diagnosed with a meningioma. 2 opinions differ

Posted by wkindel @wkindel, Sep 28, 2017

Symptoms of headaches that wake me at night, ringing in the ears, oddly pretty auras, internal left eye pain and worsening vision lead to an MRI with contrast that found a meningioma just left of center next to the large central vein. Both doctors agree it is most likely benign, but differ on treatment. Since I am symptomatic the first doctor says surgery would be in order. The second doctor says because it is relatively small and typical of a benign meningioma, that we should watch and wait, with repeated MRI's. His reasoning is at 62, the surgery is riskier than the symptoms and the likelihood of cancer. I have read some other entries in this group and apparently the watch and wait approach is common. I have to admit though it scares me a lot to leave something in there that they don't know 100% is non-cancerous, and frankly the symptoms are not fun. Someone mentioned in a post from 2016 that I can send my MRI results to the Mayo Tumor Center and get their opinion. I am extremely interested in doing this. Can someone please send me the contact information so I can arrange it? Meanwhile I am having a mammogram next week to rule out breast cancer that can be found in some meningiomas.

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

EES1 | @ees1 | Sep 28, 2017

62, also. Newly diagnosed. First MRI in my wait- and- watch period is in a few days (3 months since initial diagnosis). No symptoms. Two NSs said wait and see. One said...no big deal... if it changes, we just take it out! I asked about waiting and if in ten years it grows and he said it's not a big difference between 62 and 72. Thought....yeah.... easy for you to say. It's not your head. The other place I only saw the PA and she was not a bundle of info. I just follow threads such as these and learn as much as I can.

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6 replies
lee1967 | @lee1967 | Sep 28, 2017
In reply to @ees1 "62, also. Newly diagnosed. First MRI in my wait- and- watch period is in a few..." + (show)
@ees1

62, also. Newly diagnosed. First MRI in my wait- and- watch period is in a few days (3 months since initial diagnosis). No symptoms. Two NSs said wait and see. One said...no big deal... if it changes, we just take it out! I asked about waiting and if in ten years it grows and he said it's not a big difference between 62 and 72. Thought....yeah.... easy for you to say. It's not your head. The other place I only saw the PA and she was not a bundle of info. I just follow threads such as these and learn as much as I can.

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I'm sorry your doctor's don't seem to understand how scary this is. Mine was bleeding and causing seizures. I had a TIA in the hospital that just complicated everything. Did anyone suggest a EEG for You? I wish you well.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 28, 2017

Hi @wkindel
Here is the contact information from Mayo Clinic that you requested http://mayocl.in/1mtmR63. Experts at Mayo Clinic can review your test results, help answer your questions and guide you through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours. Be sure to mention the Brain Tumor 48-access program.

You may also be interested in watching some of our recent Expert Q&A videos about brain tumors
https://connect.mayoclinic.org/webinar/mayoclinicneurochat-about-brain-tumors-2/
https://connect.mayoclinic.org/webinar/mayoclinicneurochat-on-brain-tumors/
Please let us know what you decide and if the group can help you prepare questions for your next appointment.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 28, 2017
In reply to @ees1 "62, also. Newly diagnosed. First MRI in my wait- and- watch period is in a few..." + (show)
@ees1

62, also. Newly diagnosed. First MRI in my wait- and- watch period is in a few days (3 months since initial diagnosis). No symptoms. Two NSs said wait and see. One said...no big deal... if it changes, we just take it out! I asked about waiting and if in ten years it grows and he said it's not a big difference between 62 and 72. Thought....yeah.... easy for you to say. It's not your head. The other place I only saw the PA and she was not a bundle of info. I just follow threads such as these and learn as much as I can.

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Welcome, @lee1967, Did you have surgery?

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wkindel | @wkindel | Sep 28, 2017

Thank you. I will click on the link at work tomorrow when I can be on a computer. I don't own one, so I am doing this on a tablet. I can have my MRI and dr. notes sent. Do I need to come to one of your campuses? or can I have my tests sent and communicate by phone until Mayo tihnks I to come. Phoenix would be my best option as I have family there. I live in Cody Wy. My first opinion was here (small town of less than 10,000) and second opinion was at Billing Clinic in Billings, Mt.

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wkindel | @wkindel | Sep 28, 2017
In reply to @ees1 "62, also. Newly diagnosed. First MRI in my wait- and- watch period is in a few..." + (show)
@ees1

62, also. Newly diagnosed. First MRI in my wait- and- watch period is in a few days (3 months since initial diagnosis). No symptoms. Two NSs said wait and see. One said...no big deal... if it changes, we just take it out! I asked about waiting and if in ten years it grows and he said it's not a big difference between 62 and 72. Thought....yeah.... easy for you to say. It's not your head. The other place I only saw the PA and she was not a bundle of info. I just follow threads such as these and learn as much as I can.

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Thank you as well for your comments. I hope they are helping you now. I have not had an EEG yet. And yes, some of the doctors seem less concerned about the emotional part of all this. I guess I understand it since it is the physical stuff they (neurosurgeons) work on. I am hoping Mayo takes a more holistic approach. I am losing sleep but trying to just deal with it the best I can.

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lee1967 | @lee1967 | Sep 29, 2017
In reply to @ees1 "62, also. Newly diagnosed. First MRI in my wait- and- watch period is in a few..." + (show)
@ees1

62, also. Newly diagnosed. First MRI in my wait- and- watch period is in a few days (3 months since initial diagnosis). No symptoms. Two NSs said wait and see. One said...no big deal... if it changes, we just take it out! I asked about waiting and if in ten years it grows and he said it's not a big difference between 62 and 72. Thought....yeah.... easy for you to say. It's not your head. The other place I only saw the PA and she was not a bundle of info. I just follow threads such as these and learn as much as I can.

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No they said the they not to do surgery for a first bleed , but they will if it happens again.

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pennypony | @pennypony | Oct 4, 2017

My meningioma was discovered 3 weeks ago, it was surgically removed 2 weeks ago. I'm still having headaches and/or head pain & eye pain. I am extremely tired all the time - fall asleep at the drop of a hat.. I see the dr. or his PA a week from Friday. I would have liked to have been given info about what to expect post surgery.

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1 reply
EES1 | @ees1 | Oct 4, 2017
In reply to @ees1 "62, also. Newly diagnosed. First MRI in my wait- and- watch period is in a few..." + (show)
@ees1

62, also. Newly diagnosed. First MRI in my wait- and- watch period is in a few days (3 months since initial diagnosis). No symptoms. Two NSs said wait and see. One said...no big deal... if it changes, we just take it out! I asked about waiting and if in ten years it grows and he said it's not a big difference between 62 and 72. Thought....yeah.... easy for you to say. It's not your head. The other place I only saw the PA and she was not a bundle of info. I just follow threads such as these and learn as much as I can.

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EEG? No. What's that for ?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 5, 2017
In reply to @pennypony "My meningioma was discovered 3 weeks ago, it was surgically removed 2 weeks ago. I'm still..." + (show)
@pennypony

My meningioma was discovered 3 weeks ago, it was surgically removed 2 weeks ago. I'm still having headaches and/or head pain & eye pain. I am extremely tired all the time - fall asleep at the drop of a hat.. I see the dr. or his PA a week from Friday. I would have liked to have been given info about what to expect post surgery.

Jump to this post

Hi @pennypony.
You might interested in reading these discussions on Connect and asking questions of other members who have had surgery to prepare for your appointment tomorrow. Others also talk about pain and fatigue.
- Life after Brain surgery https://connect.mayoclinic.org/discussion/life-after-brain-surgery/
- multiple meningioma brain tumors https://connect.mayoclinic.org/discussion/brain-tumors/

I'll be interested to hear what your doctor says when you see him tomorrow.

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