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wkindel
@wkindel

Posts: 24
Joined: Sep 28, 2017

Newly diagnosed with a meningioma. 2 opinions differ

Posted by @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.

REPLY

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.

@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.

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.

@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?

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.

@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.

@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.

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.

@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 ?

@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.

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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.

My second MRI is this Friday. Wait and watch has been hard. So many what ifs. No one mentioned possible bleeds. I was mainly concerned with the possibility of cancer. I did try to call Mayo and was put on hold for a long time twice. Decided to see what this next MRI shows. Surgery ruled out until we see what it says. The tumor is right up close and maybe attached to the large central artery. Meanwhile still not sleeping well.

@wkindel

My second MRI is this Friday. Wait and watch has been hard. So many what ifs. No one mentioned possible bleeds. I was mainly concerned with the possibility of cancer. I did try to call Mayo and was put on hold for a long time twice. Decided to see what this next MRI shows. Surgery ruled out until we see what it says. The tumor is right up close and maybe attached to the large central artery. Meanwhile still not sleeping well.

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Hi @wkindel, watch and wait is hard, no doubt about that. I’m sorry to hear that you were put on hold for a very long time twice when calling Mayo Clinic. Are you comfortable with filling out the online form? It is another option that doesn’t require you to be on hold. You can find the online intake form here: http://mayocl.in/1mtmR63

I hope that you are able to get some sleep tonight. When is the next MRI scheduled?

@wkindel

My second MRI is this Friday. Wait and watch has been hard. So many what ifs. No one mentioned possible bleeds. I was mainly concerned with the possibility of cancer. I did try to call Mayo and was put on hold for a long time twice. Decided to see what this next MRI shows. Surgery ruled out until we see what it says. The tumor is right up close and maybe attached to the large central artery. Meanwhile still not sleeping well.

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second MRI done and showed no change physically. However, I have noticed I am experiencing some other side effects, probably due to stress of having a tumor. Still sleepless and now developing paranoia. Trying to make myself realize it is just stress and not to fall into believing the feelings. Moving my case back to my local nuerosurgeon and neurologist since watch and wait can be done here. No need to travel 120 miles for periodic MRI reviews. May still contact Mayo.

@wkindel

My second MRI is this Friday. Wait and watch has been hard. So many what ifs. No one mentioned possible bleeds. I was mainly concerned with the possibility of cancer. I did try to call Mayo and was put on hold for a long time twice. Decided to see what this next MRI shows. Surgery ruled out until we see what it says. The tumor is right up close and maybe attached to the large central artery. Meanwhile still not sleeping well.

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Good to hear from you, @wkindel. Stress is definitely a contributor to anxiety, paranoia and sleep issues. It is certainly difficult to not let the tumor rule your mind and your life. Have you considered different approaches to get help? There are many things to choose from, like talking with a therapist or doing yoga or other forms of exercise. While social activities can help during the day, you might consider a targeted therapy that helps with those difficult hours at night time.

@hopeful33250 and @kariulrich can tell you more about Dr. Sood’s online stress and happiness program http://stressfree.org/
Here’s also a recent post from the Cancer Education Center about mindfulness https://connect.mayoclinic.org/newsfeed-post/being-mindful-in-the-moment/

I’m just throwing things out there. Not sure what might work for you. What have you tried?

Hello @wkindel

It is nice to meet you here on Mayo Connect. I can certainly understand your anxieties and concerns. I also understand how those feelings can disturb your sleep and keep you from feeling your best. I have had three surgeries for a rare type of cancer of the digestive tract, neuroendocrine tumors (NET or sometimes referred to as carcinoid). I remember before the first surgery having nightmares and feelings of panic about what was coming up. As the recurrences occurred, the anxiety was still there, but not quite as forceful. I would certainly recommend, as Colleen has mentioned, beginning to talk about your feelings as you have here on Connect. We are always happy to listen – we are patients, like you, and we understand.

There are a lot of self help techniques as well,here is the website where you can sign up and join Dr. Sood’s online course about living stress free: http://stressfree.org/happiness/

Many of us followed this plan last year and we all benefited from it.

Are you engaged in any yoga or Tai-Chi classes? They are an important way to deal with stress as well. You can practice the movements in the evening before going to bed and it will help you to calm down. You can also buy DVDs (or rent them from your library) and practice them at home. I have numerous exercise DVDs that help me to deal with the stress of chronic illness and all of the “what ifs” that can cycle through your mind day and night.

Please keep posting and let us know how you are doing. We are “all ears” here at Mayo Connect and we value all the posts we receive.

Teresa

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