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.

@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 @cnesselroad, I see that you recently joined Mayo Connect - we are pleased to have you!

We appreciate your sharing your experience with us. How are you feeling?

Teresa

REPLY
@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

Feeling a little down but not giving up hope. It honestly doesn’t bother me that I might end up blind in one eye. Just wish I could get some kind of insight on if all of the wierd symptoms are connected. Thank you for replying it means allot.

REPLY
@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

@cnesselroad

Often by talking with others who have had similar experiences, you can get a lot of information to put your mind at ease. Many hospital systems have personal support groups for people who have had brain tumors, have you connected with any of these? Also, The American Brain Tumor Association has a website and listing of support groups by states. Here is the link, http://www.abta.org/brain-tumor-treatment/brain-tumor-support/support-groups/.

Will you check it out and see if you can get any answers or help from them?

Have you asked your doctor about the connection of these other symptoms?

Teresa

REPLY
@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

Thank you hopefulI will check out these links you sent me. My doctor told me to go ahead and try invitro but everything I have read says that pregnancy can cause the tumor to grow At exacerbated rates, so I really don’t trust his opinion anymore. My gyno doesn’t think think they are related. My neuro ophthalmologist doesn’t seem concerned either. 

REPLY

Can someone @ Mayo advise whether you do second opinions via telemedicine with existing MRIs?

REPLY
@grapetoraisin

Can someone @ Mayo advise whether you do second opinions via telemedicine with existing MRIs?

Jump to this post

I need the same info for my situation. I javemy MRIs and need 2nd opinion

REPLY

I was recently diagnosed with this as well. The Mayo docs agreed that a watch and wait approach is best given my age 59 and the size (small). They ruled out it’s cancer based on a 6 mo scan thst it had not grown. The tinnitus and vision disturbance is mild though aggravating. The surgery that the neurosurgeon explained was gruesome and the surgeon felt radiation if it was needed in the future would be the best approach. I also had breast cancer, am female, and had radiation ( for thyroid and breast cancers) and all of these put me at a risk of developing a meningioma. Mine is olfactory groove and the location makes it’s a delicate and more difficult surgery.

REPLY
@owenskf

I was recently diagnosed with this as well. The Mayo docs agreed that a watch and wait approach is best given my age 59 and the size (small). They ruled out it’s cancer based on a 6 mo scan thst it had not grown. The tinnitus and vision disturbance is mild though aggravating. The surgery that the neurosurgeon explained was gruesome and the surgeon felt radiation if it was needed in the future would be the best approach. I also had breast cancer, am female, and had radiation ( for thyroid and breast cancers) and all of these put me at a risk of developing a meningioma. Mine is olfactory groove and the location makes it’s a delicate and more difficult surgery.

Jump to this post

Forgot to say. I went online at mayos website and requested an appt. They reviewed my records and I was seen in under a month.

REPLY
@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.

Jump to this post

I had a 2cm meningioma removed at Mayo in January. It was diagnosed in 2018 and we’ve been watching it annually (wait and watch). I had no symptoms but because it was growing, albeit slowly, and it was at the base of my skull and starting to compress my spinal cord my dr recommended it be treated. I consulted with a radiologist who advised surgery first because radiation can cause some swelling at first. My surgery was 10 hours and I was in the hospital 5 days. Left the hospital using a Walker due to balance and coordination issues. Have physical therapy 4x a week and am seeing progress. My surgery involved my spinal cord which resulted in loss of mobility in my neck and left arm. That is resolving with therapy but I wasn’t told about that before the surgery. 80% of tumor was removed. I highly recommend Mayo for this type of surgery. I only wish I had been told more about what to expect post surgery. I’m glad there is a way to consult with Mayo. I would expect they’d want to treat if you are having symptoms due to the tumor.

REPLY

Is it safe to fly with a left cavernous sinus meningioma?

REPLY
Please sign in or register to post a reply.