anyone with a meningioma

anyone with a meningioma. preferably parietol lobe.
what symptoms do you get ? and how long have you been diagnosed with a meningioma?and do you feel these tumours are taken seriously?

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Hi,
I have two meningiomas now, in the cavity in my frontal lobe that remains from a crainiotomy I had to remove my first meningioma 16 years ago. That one was extremely large and affected my personality, memory, bladder control to some degree and caused me to have seizures. Once the meningioma was removed (and at that time it was taken very seriously, as a few more weeks had it not been diagnosed I most likely would have died), I then had to deal with a lengthy recovery period. I am now working full-time, healthy and fully functional, but have these two new meningioma recurrences. My neurosurgeon said I could either have surgery, stereotactic radiosurgery or simply watch and wait. I have MRI's every six months and chose the watch and wait because the original surgery and recovery are something I'd personally prefer to not experience again until absolutely necessary. I am lucky because my meningiomas aren't really causing any problems. I still must take AED's for seizures, but other than that I'm doing fine.

You are correct that meningiomas are not taken seriously. Mine was because it's size was threatening my life. Upon discovery I was immediately put into the ICU and scheduled for surgery. But overall, most people think "benign" therefore no big deal, which is incorrect. Meningiomas can be malignant. Meningiomas can recur. Meningiomas can be life threatening, require chemo and/or radiation. Granted, most are removed and people recover and are normal, but sometimes the surgery involved causes permanent disability.

I assume you have been diagnosed with a meningioma. I suggest you go on the Meningioma Mommas site, where you will find men and women who have or have had meningiomas, and who can share stories with you.

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Hello everyone! My husband was diagnosed with a A-typical meningioma (benign) after he had a seizure in 11/2010. it was pretty large and removed the same month. He had a pretty quick recovery. He was then taken off Seizure meds in April. In may 2011 he had a follow up MRI because some of it could not be removed (location- top left, back of brain). It showed it was starting to grow back. June 2011 he had gamma-knife radiation done to try to kill the cells to it. August he had another seizure (full blown seizure) They did MRI and it showed some swelling. He was put back on seizure meds again. he then started to notice his right side was going numb starting with his arm (shoulder to fingers)..it now has progressed to his leg all the ay down to his foot. Says it constantly feels like its asleep. He can barely right anymore. Some days his leg is stiff. He had a nerve test done and it was fine. On 10/26/11 he had MRI done again. Yesterday we went for the results and there is a new spot on his brain, but it is far enough away from his tumor and where radiation was done(enough normal brain tissue in between the two). The doctor said it is very small at this point so he cant say if its another meningioma at this time. Doesnt think its an infection since its been a year since his surgery.

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I have a more positive story. My meningioma was found Aug 2010 "by chance" when I had a neck CT for some problems I was having with my shoulder - I was shocked!! It apparently started growing over 30 yrs ago & was over 4cm in size, and was located in the posterior fossa (back of the head behind my ear). It was pressing on my brainstem, and though I thought I didn't have any symptoms, for several years I had been having severe headaches which were diagnosed as migraine. I saw a neurosurgeon at a Toronto Hospital who wouldn't touch me because of where it was located but he referred me to another doctor at a different hospital who specialized in these complicated types of surgery. Both doctors took this very seriously.
Luckily, my tumour was benign. It was completely removed Nov 10, 2011 in a 12 hour surgery and it took me 3 months to get back to work. I suffered double vision for 6 weeks which eventually cleared up and have not had a single neurological problem and my headaches have completely disappeared. I do, however, suffer constant pain from the craniotomy which is especially bad at night, simply because of the pressure on my head from the pillow. I've had one procedure to try & fill in the burr hole and skull deformities which didn't work and am having another one in Dec. I'm hopeful that things will be better with time and very grateful that I am generally in such good health.
My follow up is yearly MRIs - there is a slight chance it could reappear but my type of meningioma is so slow growing that they probably would never have to do anything about it at my age.
As an FYI, Meningiomas come in all shapes, sizes & locations and some can be just "watched" for years - it doesn't mean that the doctor isn't taking it seriously. As well, keep in mind that most of what you read on chat lines will be about unpleasant experiences as these folks need support, and generally people who do well do not go on these websites. Try to remain positive and if you aren't happy with your doctor, get a second opinion. if you don't advocate for yourself, who will?

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I'm in the survivor category now. My meningioma was diagnosed in the summer of 2006. It was in the occipital and lower parietal area. Symptoms occurred over decades and got extremely worse as the tumor grew. To name a few: migraines, muscle weakness on the opposite side of the tumor, neck pain, edema, weight gain, high sodium counts, visual seizures, nerve tingling, numbness in my hands. My surgery was done several weeks later at Barnes Hospital in St. Louis with my superhero of a neurosurgeon at Washington University Med. From the moment of my diagnosis everything was taken quite seriously. And, after a long recovery, I am doing just great.

If you've been diagnosed and in need of support please don't hesitate to ask further questions. It's a very scary diagnosis and there is so much to comprehend. There are many support systems in place now and ABTA is one of the best.

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Hello. I have a meningioma on (in?) the right frontal lobe...6mm. I am new to this so I don't even know if that is considered large or tiny or in a good or bad spot comparitively. I have decided it is small & placed better than it could be. I had an EEG the other day because of possible seizures or strokes. My guess is the episodes related more to an increase in neurontin. My symptoms (not knowing if from the tumor or not) are extreme pain / headaches (how they found it), vision issues (sometimes way more blurry than others), numbness, tingling, concentration issues, memory & inability to logically think something out. I can't make simple decisions sometimes & I will just shut down when overloaded. My hearing seems to fluctuate. I have jabbing nerve pain everywhere. I have some bladder & even bowel control issues (very slight), edema, weight gain & also show high sodium. Never really thought of those as symptoms of this until I read the response from someone else.
As far as being taken seriously...I get that. It is odd. If someone finds out I have this thing in my head, I get the "I am sooo sorry" look that doesn't go away until I pacify them enough to where they feel comfortable again. That's just kinda wrong. If I downplay whats going on so that my family is ok, they then act like it is nothing...not serious. I don't want people feeling sorry for me but I want, I don't know...credit (?) for what I am going through. Or an understanding for when I don't remember, can't clean, do something wrong or strange. I have respect for cancer...it runs big & strong in my family. But just because something is benign does not mean it is now nothing compared to cancer. To me, anything that is in your brain & growing (even maybe slowly) is serious. I do feel like my doctors take it seriously even though it is just a series of tests & a lot of watching. I have 4 tumors in my lungs & had 2 more of those removed last fall for a total of 6. None of these are malignant but they don't seem to know why I have had 8 tumors (the 8th being off my left ovary 3 years ago) grow in the past 3 years.
I agree with the comment about being your own health care advocate. Please consider yourself part of the team in place for your care. The only one that knows exactly what you are feeling & going through is you. You need to document what happens & when, keep a good timeline, try to gather copies of your records. Your attitude is important as well. Find the positive. There are positives and sometimes even humor. I delight in blaming anything stupid I do in front of my husband on it. I just smile & say "brain tumor!" - he yells "That's NOT funny!" It's MY tumor so it's funny if I say it is!

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I was diagnosed with this in 2005; and had gamma knife in January 2006. It hasn't really changed size or shape since the diagnosis. I sort of feel like
the animal in the cross hairs of the gun waiting for someone to take a shot. It probably took three years for me to feel like myself again after the
gamma knife. Since that time I get my yearly MRI's, which I dread just to be told we will wait to see again that it is still there. I first hoped that the
procedure would make it go away, now I know better and have since feel like the sitting duck.

The only way I make it through is to joke, and say I did "whatever" because I have a brain tumor. It usually makes people not know what to say,
and me chuckle.

Have a good day, everybody and feel well!

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