Meningioma: Anyone else? I'm frightened

Posted by pixie49247 @pixie49247, May 12, 2023

I just found out I have a Meningioma tumor from a MRI I had for something else. Doctor said they are almost always benign and am going to get an appointment with a neurologist. Anyone else have one of these. I’m getting very frightened now.

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Profile picture for triciax @triciax

I had the same unwanted news. I had a bassline MRI to see if, after looking at so many other possible causes, my frequent lightheadedness had a neural basis. No problem there (and my lightheadedness has since stopped) BUT there was a meningioma the size of a kidney bean. It's not causing any problems now, and I am old so it's on watch status. I felt lucky, as you, to have discovered it early by accident. I have 2 friends who did not discover this problem until they had very serious symptoms. They were the size of fists! They are almost always benign and slow growing. So please worry less.

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Thank you for sharing this information. I have scheduled MRI on 5 th.
Hopefully it should provide more accurate results.

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Profile picture for elisabeth007 @elisabeth007

my doctors have told me many people never get symptons and never get much growth ….and can stay on wait and watch for ever.

My doctors and i don’t believe in non-essential surgery

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Unbelievable to me what a month has meant since my message above of exactly one month ago…..i am now scheduled for surgery this month and am experiencing symptoms with “sudden onset” (after almost 7 years of watch and wait)

On a positive note, i feel very psychologically prepared for surgery—i sincerely hope after a period of recuperation, the surgery will improve my quality of life.

I was offered surgery for the first time six months ago and couldn’t imagine i was so close to needing it…..and two excellent neuro-surgeons thought i could wait another six months and have another MRI “and nothing would happen” I don’t fault them….the tumor suddenly grew down into my brain after over six years of being on the surface. in may 2024, it was a “convexity meningioma”. It’s now a “parasaggital meningioma and feels very different. For me, it’s “easier” to accept the need for surgery, now that i’m “suffering”. i absolutely was not ready to have surgery six months ago….i am now…there are so many logistics to resolve before surgery and i pray for the ability and resilience to complete everything i must get done.

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Profile picture for kob @kob

Week ago my CT scans ( done because of sinuses issues ) were revealed and 2 cm big meningioma, detected on my right frontal lobe. I’m waiting for my MRI appointment. It is the most terrifying information that I am not sure how it handled.

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I had the same unwanted news. I had a bassline MRI to see if, after looking at so many other possible causes, my frequent lightheadedness had a neural basis. No problem there (and my lightheadedness has since stopped) BUT there was a meningioma the size of a kidney bean. It's not causing any problems now, and I am old so it's on watch status. I felt lucky, as you, to have discovered it early by accident. I have 2 friends who did not discover this problem until they had very serious symptoms. They were the size of fists! They are almost always benign and slow growing. So please worry less.

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Profile picture for elisabeth007 @elisabeth007

i would feel like slapping a surgeon who underplayed the risk factor of age and who essentially made a joke of it. Surgery is high revenue generating business and i want and have a serious surgeon.

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I didn't consider my surgeon's remark that I was "72 years young" as a joke when I discussed, with him, having my aneurysm coiled. Not in the least. Perhaps because I didn't regurgitate the entire conversation one could interpret it that way. My neurosurgeon knows my health history, knows that I did quite well after a craniotomy at age 71 last year, knows that I am an active septuagenarian. He answered all of my questions, of which the age issue was only one, concisely and professionally. I feel that I am in good hands.

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Profile picture for tam2lam @tam2lam

Congratulations on getting the surgery done and the tumor removed! I had a similar operation at Mayo Phoenix on Oct 23. As I understand it Mayo strongly supports a team approach where doctors from all related disciplines give input as needed. I had a followup appointment with radiation oncology as well. As the MRI confirmed all my stage 1 meningioma had been successfully removed there was nothing for them to say except congrats and we will keep connected for followup if needed. Maybe send a message through the portal and ask about a followup with them to be scheduled after your next MRI? I think they would understand that.

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That is what I have done. I’m waiting for replies.
Thanks. Congratulations on your successful outcome
Do you seem to have any lingering symptoms?
Headache, blurred vision?

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Profile picture for verdescape @verdescape

I did get a thorough second opinion. My situation was serendipitous. I had cataract surgery in LA. I thought the blurred vision was a result of the cataract. I had multi focal lenses installed and that’s when we knew something was wrong. My cataract surgeon started out sending me to a Retina specialist. There was slight decrease in blood flow in optic nerve. I was then sent to UCIrvine med center and was seen very quickly by a Neurophthalmologist. .
I then had mri w/ without contrast. It showed the tumor pressing on optic nerve. I knew I wanted it removed. There was still a slight chance that my vision might improve if pressure was removed. I met with the head of neurosurgery and an ear nose and throat surgeon at UCIrvine. They proposed removal up through my nasal way not a craniotomy. I was very impressed but as we all know we are very scared. I had secured a consult at the Mayo the day before I was going to have my operation. I postponed the surgery and went to Rochester.
On Oct 25, 26 I was seen by all of the same specialists that I saw at UCI. They came to the same diagnosis.
They offered me a surgery date for Nov 25. I decided to have the procedure done at Mayo.
My advice is get the second opinion and ask both teams all of the same questions. UCI doctors discussed a procedure to not necessarily attempt to get 100% of the tumor.
Several reasons. #1 risk of damage to surrounding vital structures # 2 the very slow growth rate of meningiomas, #3 until surgery was performed the surgeon would not know the composition of the meningioma. Some can be fibrous and stick to everything. Others can slide away from structures more easily.
and #4 we could monitor and go back in with a craniotomy later if needed.
I did not have this conversation with the Mayo drs. So when I came out of recovery and the team was really excited that they got 100% of the tumor I was shocked. They said it separated easily.
As I’ve said time will tell I’m 6 days post surgery.
The oncologist bothers me, it’s a clerical scheduler who is insisting on the visit and it can’t be done virtual. I live in San Diego Ca.

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Congratulations on getting the surgery done and the tumor removed! I had a similar operation at Mayo Phoenix on Oct 23. As I understand it Mayo strongly supports a team approach where doctors from all related disciplines give input as needed. I had a followup appointment with radiation oncology as well. As the MRI confirmed all my stage 1 meningioma had been successfully removed there was nothing for them to say except congrats and we will keep connected for followup if needed. Maybe send a message through the portal and ask about a followup with them to be scheduled after your next MRI? I think they would understand that.

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Profile picture for Maryann @mkoch

verdescape: Congratulations on the successful removal of all the meningioma even though it was located around so many critical structures. I am a success case as well, having had a 3 centimeter meningioma completely resected 1/16th of an inch from my optic nerve a year ago. I had extreme double vision afterward for 3 months. So I am hopeful your vision will return to normal within that time frame. My neurosurgeon was sure he didn't nick the nerve during surgery and I was told my double vision was due to generalized trauma to the nerve. Also, swelling is a given after a craniotomy and that could put pressure on the surrounding nerve tissue. I would like to bring up a point with regard to the vision issue. After surgery I was immediately referred to a neuro-opthamologist because of the vision problem. Given your vision issues are you sure the referral isn't for a neuro-opthamologist as opposed to a neuro-oncologist? Hope you aren't offended that I would ask/suggest that. It just seems so odd given the grade of your meningioma along with being told it is benign.

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most people are referred to a neuro-oncologist after surgery. Sometimes they need to ask for a neuro-opthamology referral. i’m grateful i’ve had an excellent neuro-opthamologist for over 10 years

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Profile picture for Maryann @mkoch

I just saw this. I have been away for Thanksgiving. Thank you for your reply. I did bring up my age with the neurosurgeon and his reply was, "You're 72 years young." I always suggest to people on this post to get a second opinion, then settle on a neurosurgeon you trust, and follow their recommendation. So I guess I should follow my own advice. (insert a smily face) All of our situations are different because there are so many different variables involved. I did have a CT Angiogram which is more detailed than an MRA so perhaps the neurosurgeon at UCSF saw something that made him lean more in the direction of coiling the aneurysm sooner than later . At any rate, I am set to go December 16th and will let you know how it goes.

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i would feel like slapping a surgeon who underplayed the risk factor of age and who essentially made a joke of it. Surgery is high revenue generating business and i want and have a serious surgeon.

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Profile picture for elisabeth007 @elisabeth007

i now have surgery scheduled. The tumor has grown down headed towards dangerous teriorith

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Elisabeth: I've been thinking of you over the Thanksgiving holiday and wondering how you're doing. I had a craniotomy a year ago and I did so well after the surgery I didn't even go to the intensive care unit. (was released to "step down" which isn't the main floor as the patient to nurse ratio was 3 to 1) I only spent two nights in the hospital. I was told to walk everyday upon discharge. (I walked around the dining room table multiple times.) I did sleep a lot the first few weeks but other than that I was completely independent. I have high hopes that you will find the surgery less overwhelming than you're probably imagining. Good wishes are being sent your way.

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Profile picture for elisabeth007 @elisabeth007

my doctors have told me many people never get symptons and never get much growth ….and can stay on wait and watch for ever.

My doctors and i don’t believe in non-essential surgery

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i now have surgery scheduled. The tumor has grown down headed towards dangerous teriorith

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