1. < Brain Tumor

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.

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wkindel | @wkindel | Nov 15, 2017

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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10 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 15, 2017
In reply to @wkindel "My second MRI is this Friday. Wait and watch has been hard. So many what ifs...." + (show)
@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?

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wkindel | @wkindel | Nov 29, 2017
In reply to @wkindel "My second MRI is this Friday. Wait and watch has been hard. So many what ifs...." + (show)
@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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 29, 2017
In reply to @wkindel "My second MRI is this Friday. Wait and watch has been hard. So many what ifs...." + (show)
@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.

Jump to this post

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?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 29, 2017

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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2 replies
wkindel | @wkindel | Nov 29, 2017
In reply to @wkindel "My second MRI is this Friday. Wait and watch has been hard. So many what ifs...." + (show)
@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.

Jump to this post

Thanks I will check out the info

REPLY
wkindel | @wkindel | Nov 29, 2017
In reply to @hopeful33250 "Hello @wkindel It is nice to meet you here on Mayo Connect. I can certainly understand..." + (show)
@hopeful33250

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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Thanks so much for the understanding remarks. I have always been a strong person with complete control of my emotions. I have a husband with health issues and two adult sons with their share too. We used to say “Momma can’t get sick”. Well now this tumor, huge weight gain and paranoia. I have a highly stressful job. I will try some of the suggestions you and Colleen have given. We have a very nice rec center with a raised jogging/walking path. My husband has agreed to take up walking there with me when it’s too wintery outside. I think they have yoga classes.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 30, 2017
In reply to @hopeful33250 "Hello @wkindel It is nice to meet you here on Mayo Connect. I can certainly understand..." + (show)
@hopeful33250

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

Jump to this post

Hello @wkindel

Chronic illness is certainly more difficult if you have always been the strong person, isn't it? You begin to need to adapt to a "new normal" don't you?

The Rec Center's walking path and the yoga class all sound like good ideas.

Will you keep us posted as to how you are doing? We would like to support you as you go through this difficult process.

Teresa

REPLY
cnesselroad | @cnesselroad | Dec 7, 2017
In reply to @wkindel "My second MRI is this Friday. Wait and watch has been hard. So many what ifs...." + (show)
@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.

Jump to this post

Hello wkindel, I have a left wing sphenoid meningioma. What was your diagnosis?

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cnesselroad | @cnesselroad | Dec 7, 2017
In reply to @wkindel "My second MRI is this Friday. Wait and watch has been hard. So many what ifs...." + (show)
@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.

Jump to this post

I was diagnosed two years ago January 2016. Had transphenoidal partial resection. Still living with the tumor so I understand where you are coming from

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