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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@mary963

Hello, my name is Mary. I am 51y female. I was diagnosed with a meningioma this past year. I am about to have my second mri in January. Do you know where I can find more information on symptoms and treatment. The doctor I have gone to hasn't even shown me EXACTLY where I have this in my head. I tried looking for information myself but it is not very clear. Any information would be really helpful.
Thanks

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I went to two doctors to make sure this was what i was dealing with, and both doctors (in totally different cities) told and showed me exactly where this was. Ask your doctor who did the MRI or your neurosurgeon.

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Was diagnosed earlier this year. Went through radiation for it.

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@andreadiofaulks1969

Very tired, I still be a little confused at times, my balance get a little off, headaches and I be sleepy throughout the day. But I was told those can be done side effects. But I do have my good day as to where I don’t have any side effects and I take full advantage of those.

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OK, thank you for your reply. I'm always trying to collect as much information as I can and I especially value first hand accounts from people who have experienced a particular medical procedure.

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@mkoch

OK, thank you for your reply. I'm always trying to collect as much information as I can and I especially value first hand accounts from people who have experienced a particular medical procedure.

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Right

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Yes most if not all are benign. Stay connected with your neurosurgeon and your M.D

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@kob

I’m waiting for an appointment with the neurosurgeon.

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Hopefully you’ll get one soon.

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@dbicher

I had a golf ball sized benign one removed from my left front in 2021. Didn’t even really know I had it until I had a ‘silent stroke.’ Thank heavens the dog kept barking at me until my son found me. The day after surgery, I felt 1000 times better. Truly Miraculous, as you’ll see.
Taking Generic Keppra and Vimpat which cause some balance problems, but who really cares? Better than the alternative.
Everyone’s thoughts are with you. You’ll be okay.

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@dbicher, sounds like your story might be a good one for this discussion:
- What Pets Can Do: Health and Healing https://connect.mayoclinic.org/discussion/what-pets-can-do-health-and-healing/

What helps you with the balance issues?

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@mkoch

Andrea, I am on watch-and-wait protocol for 2 meningiomas. I have been told that if they continue growing to the point that something needs to be done it will be radiation. So, I am wondering, what are the side effects from radiation that you received in October that you are still adjusting to?

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Hello, when i had my gamma knife procedure (mar 22) recovery was difficult for a few days and some headaches for a couple of wks and tiredness but afterwards I was ok. Mind you im 52 and still experiencing brain fog and some memory issues but not sure if it's due to my 2 meningiomas or menopause or Hashimotos.

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@roz0606

Hello, when i had my gamma knife procedure (mar 22) recovery was difficult for a few days and some headaches for a couple of wks and tiredness but afterwards I was ok. Mind you im 52 and still experiencing brain fog and some memory issues but not sure if it's due to my 2 meningiomas or menopause or Hashimotos.

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Thank you for sharing your experience. Sounds like something I could handle. I mean, to be realistic, I can't expect to breeze through it without any side effects at all.

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@mary963

Hello, my name is Mary. I am 51y female. I was diagnosed with a meningioma this past year. I am about to have my second mri in January. Do you know where I can find more information on symptoms and treatment. The doctor I have gone to hasn't even shown me EXACTLY where I have this in my head. I tried looking for information myself but it is not very clear. Any information would be really helpful.
Thanks

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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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