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Meningioma: Anyone else? I'm frightened
Brain Tumor | Last Active: 1 day ago | Replies (403)Comment receiving replies
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.
Replies to "Mary: I went to the ER 3 years ago b/c of tingling down my arm. My..."
Thank you for your reply, back when I was diagnosed with the meningioma (in June of 2024), the neurologist told me that many people live up to 30 years with these things in their heads, because they grow slowly. When I had this second mri done, it has grown. Now I went to see the neurosurgeon and right away he said I should have it removed. I have so many questions, I am really nervous and anxious. I don't know what to think. I told him yes that I wanted to have this surgery done, but I'm really having doubts if I should have the surgery. I'm afraid of all the things that can during the surgery and also after, like possible side effects.
I would also like to mention that I had Leukemia as a child, when I was 10. I underwent treatment including radiation. This neurosurgeon said that a lot of patients that had radiation treatment might develop this meningiomas.
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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.