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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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julieforrest380 | @julieforrest380 | Jan 17 3:39pm
In reply to @mkoch "Julie: By "outside" of your brain I am assuming the tumor is in your meninges, which..." + (show)
@mkoch

Julie: By "outside" of your brain I am assuming the tumor is in your meninges, which are the linings outside, covering, your brain. Then I think it would be a meningioma. If so, I had such a benign tumor removed ("resected" is the vernacular used by my neurosurgeon) and the craniotomy was not the nightmare I imagined. At any rate, try not to be too "scared to death." I am assuming your surgery is tomorrow, Wednesday. Best wishes on a speedy recovery. Feel free to send me a personal message if you need to vent.

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It was exactly how you explained! I am home today but was 9 days in hospital! I feel alittle dingy but so glad it’s over. You were right about everything now to Heal. Thank you so much for your support.

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1 reply
mkoch | @mkoch | Jan 17 3:47pm
In reply to @julieforrest380 "It was exactly how you explained! I am home today but was 9 days in hospital!..." + (show)
@julieforrest380

It was exactly how you explained! I am home today but was 9 days in hospital! I feel alittle dingy but so glad it’s over. You were right about everything now to Heal. Thank you so much for your support.

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I am so happy to hear! Big hugs to you!

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thomhorowitz | @thomhorowitz | Jan 17 4:15pm
In reply to @thomhorowitz "I had a Glioma that ate most of my right temp. Lobe. 7.5 hrs in o..." + (show)
@thomhorowitz

I had a Glioma that ate most of my right temp. Lobe. 7.5 hrs in o r. No real post op pain. Out of icu in 1 day. Home in4. All that at 74 years of age.

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Thanks. This last cbc prechemo. My bested. On round 8 of TMZ. To go 12 if tolerated.

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mono21 | @mono21 | Jan 18 10:14am
In reply to @elisabeth007 "i just had a Meningioma surgically removed after being on watch & wait for almost 8..." + (show)
@elisabeth007

i just had a Meningioma surgically removed after being on watch & wait for almost 8 years

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Hope you’re feeling better.

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1 reply
mary963 | @mary963 | Jan 18 3:28pm
In reply to @mkoch "Mary: I went to the ER 3 years ago b/c of tingling down my arm. My..." + (show)
@mkoch

Mary: I went to the ER 3 years ago b/c of tingling down my arm. My husband was worried about a stroke. (It was a nerve issue in my neck.) But, the MRI showed I had a meningioma. I informed my primary care doctor and he said not to worry b/c they found meningiomas all the time when screening for strokes and they usually were benign and didn't cause any real problems. Interestingly enough, I had seen this same doctor at least 4 times about these vague symptoms I had been having over the course of 3 or 4 years. Finally, I put 2 and 2 together and asked him for a referral to a neurologist. I told the neurologist I suspected that maybe these symptoms I had been complaining of were from the meningioma. ( Symptoms are correlated to where the meningioma is and what nerve or struture it is pressing on.) I asked the neurologist where the meningioma was. He actually had the report in hand from the prior MRI. He said, and this is a direct quote, "I don't know." He then excused himself from the room and said he was going to call the radiologist. I heard them talking for 5-10 minutes in the room next to me. The neurologist came back and told me, per the radiologist, that it was pressing on my trigeminal nerve and, yes, those symptoms I had been complaining of could definitely be associated. The neurologist referred me to a neurosurgeon. I will always respect the neurologist for being honest and not trying to b.s. his way through a question he did not know the answer to. I have since been told that a neurologist specializes in diseases of the brain. So, I tend to be long-winded, but you will get an answer to your question most definitively from a radiologist (but we, as patients, don't consult with them) or a neurosurgeon. You didn't mention in your post whether the doctor who is ordering the MRIs is a neurosurgeion but if he is not, I would definitely ask for a referral to one. Also, educate yourself as much as you can before any consultations. Mayo Clinic, Cleveland Clinic, Johns Hopkin all have good websites discussing meningiomas. Then, I always write down questions I have which I take with me during the consult.

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Hello MKoch,

Thank you, thank you so much for the information. Yes I am trying to learn as much as I can about this. The doctor (neurologist) that I am seeing is not very helpful. I have suffer from headaches since for ever (back in high school I did see a neurologist too - he found nothing, but I don't remember getting tested.) I had these for periods, like months and then I would have no headaches at all for months too. They just come and go, like relapses. But these past 3 years these headaches have gotten so common, I basically have pain all the time, sometimes/ somedays they are more bothersome. I went to the doc. who referred me to the neurologist. When the neurologist order the mri back in july, he told me the headaches were NOT caused by the mri???? so he said I was going to be getting mri every 6 months, so they could monitor the growth. Apparently he said patients can have these for years (even 30 years!!! - because his grandmother had one for that long), without them causing problems. I have schedule the 2 mri this month, I'm still pending insurance, because I change insurance providers and now they have to do all the paper work again..
Again thank you for your information, i will change doctors (neurosurgeon) because I had already thought about that too.

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ncadler | @ncadler | Jan 19 9:09am
In reply to @terid "Hi, I just found out I have a timy Meningioma tumor from a MRI also and..." + (show)
@terid

Hi, I just found out I have a timy Meningioma tumor from a MRI also and my Doctor said they are almost always benign. I too, am going to get an apointmetnt with a neurologist. My Doctor also said they may just wait and see what happens. Best of wishes!

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cant speak for anyone else, but....i had one mengioma diagnosed13 yrs ago in california @ stanford med and another here in st paul last year. i was told they are very slow growing.

that does not take away from the fear and angst of wait and see, i know.

~~~best!

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kris1970 | @kris1970 | Jan 19 2:27pm

In Sept 2022 I was diagnosed with a 6cm meningioma on the right frontal lobe. Surgery a couple weeks later was successful to have it removed. Due to the size my Dr said he wouldn’t wait to get it taken out. If it’s small and considering it location and risks, radiation may be the best option. I am undergoing observation. Yearly now to make sure it doesn’t come back. MRI already on the dance card for March. Dr said if there would be any re-growth, chemo or radiation would be the suggested treatment.
My heart breaks for those who can’t have it removed and have to live with them. It’s not supposed to be there it’s not from our Father. My prayers go up for you all either living with them or treating them. Prayer also go up for the medical teams who are helping people with them.

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1 reply
mary963 | @mary963 | 6 days ago
In reply to @andreadiofaulks1969 "I have googled and searched webs and everywhere I could to find as much research as..." + (show)
@andreadiofaulks1969

I have googled and searched webs and everywhere I could to find as much research as possible. Continue to ask your doctor all the questions you have about your situation. The results of your MRI is the will show you exactly where it’s located.

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Yes, thank you. I will have my 2 mri this next week (hopefully the insurance goes thru). I am planning to see a different doctor (neurosurgeon) because this neurologist can do nothing as far as removing it.

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helenbrown7944 | @helenbrown7944 | 4 days ago
In reply to @mono21 "Hope you’re feeling better." + (show)
@mono21

Hope you’re feeling better.

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Hi hiw ling did it take you to recover fully

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helenbrown7944 | @helenbrown7944 | 4 days ago

Hi I had a MRI 4 days ago I was called 3 hours after to tell me I have a tumor on the lining of my brain thats about 2 inches big which has some swelling and wanted me to go back in a day later to have another but to have the dye put in to highlight the bloody, so I did that now im just waiting. I'd love to know how long full recovery is as i have a holiday booked and paid for for the 13th (just over 2 weeks) for my birthday and dont want to miss it so does the recovery take longer. I'm hoping they can just control the swelling and remove it when I get back but I am so scared I'm scared to do anything right now in case I make it worse I cant even have a shower unless I have someone come and just sit and wait while I have it

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