So You Got Yourself a Little Noggin Rock
Congratulations on entering the world of brain tumors! I say that with positivity because, although we’d all rather not have any brain tumors whatsoever, you have (or your loved one has) selected “meningioma” as your tumor of choice and that, my friends, is the best one of the whole tumor-y lot.
But you are probably a bit freaked out right now. I mean, a medical professional just used the phrase “brain tumor” (or more likely, “brain lesion” to lessen the impact) and “you” in the same sentence. So what do you do now? Here’s my guide:
1. Take a deep breath. You have a meningioma. It’s a benign, slow-growing tumor. Sure, sure, “benign” does not mean that it can’t be dangerous or even life-threatening. But it is not cancer, and that right there should save you a world of trouble and worry.
2. Read what you can find about meningiomas, but stop if you start panicking. After I was initially diagnosed, but before I saw a neurosurgeon for confirmation, I read an online pamphlet about all different kinds of brain tumors, their symptoms and prognoses. There was another type of tumor that could have possibly been mine if the lesion in my head wasn’t actually a meningioma. I freaked the hell out and almost started hyperventilating. I had to read the radiologist’s report over and over again: “lesion consistent with meningioma.” Not one of the scary ones. This video from my neurosurgeon’s office was about all I could handle at first.
3. Tell your family and friends, but practice first! Your learning curve on brain tumors was steep; theirs will be, too, so make sure to emphasize the benign nature of your tumor. Try not to start laughing before you tell them the news, as it sends a very mixed message. I know this from experience.
4. Know that though you are now part of an exclusive club (people with a primary brain tumor—about 78,000 people diagnosed in the US each year), as a meningiomate (my own word for a person with a meningioma), your club may be far more common that most people realize. Some doctors estimate that as many as 10% of the population may have a meningioma but just not know it yet. This estimate is based on autopsies of people who died of other causes where the pathologist found an undiagnosed meningioma. (Odd fact: There are eight people in my book group, but I am the third to have been diagnosed with a meningioma.) So use this knowledge however it suits you: Need to calm yourself down? Remind yourself that most people who have meningiomas don’t even know it, and yours might be the same except that you know about it. Want to feel bad-ass? You have a primary brain tumor, baby! You got that something special goin' on in your noggin.
5. See a neurosurgeon as soon as you can, if you haven’t already. I was diagnosed by my primary physician, who instructed me to see the neurosurgeon first, and then a neurologist, if needed. I didn’t like the “surgeon” part of his recommendation, so I saw the neurologist first, and didn’t see the neurosurgeon until more than a month had passed. While the neurologist declared that my symptoms were unrelated to the thing in my head and nothing to worry about, she could not clear up my questions about what that thing was doing. The neurosurgeon was able to calm me down by telling me what symptoms a tumor where mine is located would cause (I didn’t have any of those) and that if someday I’d need surgery, that it would be very straightforward. Now, if you have to have surgery, the sooner you get the lowdown on what yours will entail and how soon you’ll recover, the better. And, if facing surgery, get a second opinion. It may do wonders in helping you come to grips with craniotomy. (Much, much more on that topic later.)
6. Go about life as usual, if you are not hampered by symptoms. Unless you have symptoms, your meningioma is essentially a pet rock in your head. No maintenance required, aside from the periodic MRI (the happily named "MR HEAD BRAIN W/WO").
So with the caveat that “Your experience may and will vary,” please read on about my experience with meningioma, craniotomy, and beyond.
But you are probably a bit freaked out right now. I mean, a medical professional just used the phrase “brain tumor” (or more likely, “brain lesion” to lessen the impact) and “you” in the same sentence. So what do you do now? Here’s my guide:
1. Take a deep breath. You have a meningioma. It’s a benign, slow-growing tumor. Sure, sure, “benign” does not mean that it can’t be dangerous or even life-threatening. But it is not cancer, and that right there should save you a world of trouble and worry.
2. Read what you can find about meningiomas, but stop if you start panicking. After I was initially diagnosed, but before I saw a neurosurgeon for confirmation, I read an online pamphlet about all different kinds of brain tumors, their symptoms and prognoses. There was another type of tumor that could have possibly been mine if the lesion in my head wasn’t actually a meningioma. I freaked the hell out and almost started hyperventilating. I had to read the radiologist’s report over and over again: “lesion consistent with meningioma.” Not one of the scary ones. This video from my neurosurgeon’s office was about all I could handle at first.
3. Tell your family and friends, but practice first! Your learning curve on brain tumors was steep; theirs will be, too, so make sure to emphasize the benign nature of your tumor. Try not to start laughing before you tell them the news, as it sends a very mixed message. I know this from experience.
4. Know that though you are now part of an exclusive club (people with a primary brain tumor—about 78,000 people diagnosed in the US each year), as a meningiomate (my own word for a person with a meningioma), your club may be far more common that most people realize. Some doctors estimate that as many as 10% of the population may have a meningioma but just not know it yet. This estimate is based on autopsies of people who died of other causes where the pathologist found an undiagnosed meningioma. (Odd fact: There are eight people in my book group, but I am the third to have been diagnosed with a meningioma.) So use this knowledge however it suits you: Need to calm yourself down? Remind yourself that most people who have meningiomas don’t even know it, and yours might be the same except that you know about it. Want to feel bad-ass? You have a primary brain tumor, baby! You got that something special goin' on in your noggin.
5. See a neurosurgeon as soon as you can, if you haven’t already. I was diagnosed by my primary physician, who instructed me to see the neurosurgeon first, and then a neurologist, if needed. I didn’t like the “surgeon” part of his recommendation, so I saw the neurologist first, and didn’t see the neurosurgeon until more than a month had passed. While the neurologist declared that my symptoms were unrelated to the thing in my head and nothing to worry about, she could not clear up my questions about what that thing was doing. The neurosurgeon was able to calm me down by telling me what symptoms a tumor where mine is located would cause (I didn’t have any of those) and that if someday I’d need surgery, that it would be very straightforward. Now, if you have to have surgery, the sooner you get the lowdown on what yours will entail and how soon you’ll recover, the better. And, if facing surgery, get a second opinion. It may do wonders in helping you come to grips with craniotomy. (Much, much more on that topic later.)
6. Go about life as usual, if you are not hampered by symptoms. Unless you have symptoms, your meningioma is essentially a pet rock in your head. No maintenance required, aside from the periodic MRI (the happily named "MR HEAD BRAIN W/WO").
So with the caveat that “Your experience may and will vary,” please read on about my experience with meningioma, craniotomy, and beyond.
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