Meningioma: Anyone else? I'm frightened

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.

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.

Mary, when I was diagnosed a year and a half ago with a 2.7 centimeter close to my optic nerve the neuro-oncologist said radiation. But a different neurosurgeon I consulted said remove it. Did the neurosurgeon you saw explain both and then state why he was suggesting surgery rather than radiation? I think removing it is always preferred unless your age and general health precludes that possibility. (General anesthesia is harder on older people.) Radiation would be the second line of defense if the location is too dangerous to operate in. Or, if the meningioma is too large (I was told 3 centimeters but others on this forum have quoted 4 and 5 centimeters) radiation is not an option. With all that being said, I did have a craniotomy and it was not the nightmare I imagined it to be. A much easier surgery than the hysterectomy I had years ago.

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.

Like you, I was diagnosed around the same time. They were looking for a cause for my newly developed tremor, but found the meningioma instead (lucky me). I've spoken with a few doctors and they agree that surgery is a good option if it's at the stage where they need to act. Right now they got me at "wait and see" and have done another MRI to see if it's grown (stable so far). Keep asking questions and documenting their answers and your health.

Wishing you a speedy healing with which ever method you and your doctors choose.

They are mostly benign. I had a baseball sized one removed 6/24/24. Unfortunately, it was Grade 3 malignant, which only 1-3% of them are. Only 300 a year in the USA, so there is very little information about them. I had to follow up with 6 weeks of daily radiation. That ended in September, and now I am on MRI every 4 months to watch for regrowth. I had an MRI this morning, but won't know until next week what the results are. If its relatively small, NS will usually watch and wait until it has grown to a certain size (I believe it's 4cm) before doing surgery.

Hi,
Have had mine at base of my skull.
Although benign it grew a bit.
I am starting stereotactic surgery (radiation cyber knife)next week.
Am very anxious..
Anyone have this kind of radiation?