A Tale of my Personal Battle with Mad About Meninigomas!!
This particular blog is very personal to me...as I am fighting mad! Last week a high profiled neurosurgeon...made the blanket statement...that, "After you have a craniotomy for a Meningioma you are cured."
That is just utter nonsense. As many of you know...I had a benign Meningioma removed on September 8TH, 2008. I am almost 2 years out...but I have to tell you...that my recovery has been anything but *BENIGN*!
I still battle with constant head pain...so severe at times...that all I want to do is scream...and nausea so bad...that I just feel miserable.
I hardly call that cured. You have to also know that people in my support group...Meningioma Mommas are not taking this sitting down. Many have written this individual...and one was even fortunate to get her letter published. I was so proud of her. She worded it in such a way...that you can't deny...that there are still problems/deficits after such a procedure.
The facts I want to bring out here are...even though many of these Meningiomas are benign...as I said before...I hate that word...there are people who suffer great hardship. Some have lost their jobs...marriages have been destroyed because the spouse can't handle what they have gone through. How about the person...going through it? You actually think...it's a picnic for them?
I also know of people who have had Meningiomas removed or not entirely..because of the danger of their location. They live from one MRI to the next..now do you call that cured?
I also know of people who can't drive...because they suffer from seizures...yeah...they had a benign Meningioma!
More awareness has to be made to this most primary brain tumor...although sadly...the least acknowledged.
After a statement like that was made in the medical community..who is going to take these seriously? I know who does...the thousands of people in my support group...and yes...even some of their caregivers.
My PCP put it so eloquently...when he said.. "Meningiomas can be serious..but they are always SERIOUS...to the person who has one." He really gets it!
I also was on the other side of the spectrum of being told that mine could be watched! It wasn't until after my neurosurgeon...told me it was heading right toward my motor skills...that I realized what a great injustice to me, had taken place.
I had no alternative but to have it removed. The pain was getting worse...and I certainly didn't want more damage to occur.
I have met some wonderful people from all over the country and even the world...in my support group and through Facebook.
We are all in agreement...that Meningiomas need to have more funding...and stop being treated as insignificant...because this just makes us angry!
This being National Brain Tumor Awareness Month...the 2ND one...as I have mentioned in a previous blog...this has even become a greater battle for all of us to fight...and we intend to win!
So you ask me if I am Mad About Meningiomas? My response to you is, you better believe I am!
That is just utter nonsense. As many of you know...I had a benign Meningioma removed on September 8TH, 2008. I am almost 2 years out...but I have to tell you...that my recovery has been anything but *BENIGN*!
I still battle with constant head pain...so severe at times...that all I want to do is scream...and nausea so bad...that I just feel miserable.
I hardly call that cured. You have to also know that people in my support group...Meningioma Mommas are not taking this sitting down. Many have written this individual...and one was even fortunate to get her letter published. I was so proud of her. She worded it in such a way...that you can't deny...that there are still problems/deficits after such a procedure.
The facts I want to bring out here are...even though many of these Meningiomas are benign...as I said before...I hate that word...there are people who suffer great hardship. Some have lost their jobs...marriages have been destroyed because the spouse can't handle what they have gone through. How about the person...going through it? You actually think...it's a picnic for them?
I also know of people who have had Meningiomas removed or not entirely..because of the danger of their location. They live from one MRI to the next..now do you call that cured?
I also know of people who can't drive...because they suffer from seizures...yeah...they had a benign Meningioma!
More awareness has to be made to this most primary brain tumor...although sadly...the least acknowledged.
After a statement like that was made in the medical community..who is going to take these seriously? I know who does...the thousands of people in my support group...and yes...even some of their caregivers.
My PCP put it so eloquently...when he said.. "Meningiomas can be serious..but they are always SERIOUS...to the person who has one." He really gets it!
I also was on the other side of the spectrum of being told that mine could be watched! It wasn't until after my neurosurgeon...told me it was heading right toward my motor skills...that I realized what a great injustice to me, had taken place.
I had no alternative but to have it removed. The pain was getting worse...and I certainly didn't want more damage to occur.
I have met some wonderful people from all over the country and even the world...in my support group and through Facebook.
We are all in agreement...that Meningiomas need to have more funding...and stop being treated as insignificant...because this just makes us angry!
This being National Brain Tumor Awareness Month...the 2ND one...as I have mentioned in a previous blog...this has even become a greater battle for all of us to fight...and we intend to win!
So you ask me if I am Mad About Meningiomas? My response to you is, you better believe I am!
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