The Demon in My Head

I am recovering from brain surgery...four years ago I was told the same thing, "too small, people die with these and never know they had them"....after a one year follow up I 'forgot" I had a tumor..it was benign, it didn't matter. After months of headaches and nausea, I had another MRI and was told my tumor had doubled in size and was growing toward the main vein/sinus. Surgery saved my life and I too am haunted by the number of people suffering due to the minimizing physicians, who are not neurosurgeons, do and never follow up.

Wonderful article. The common theme to most meningioma patients is the delay in diagnosis, yet the medical community refuses to recognize its own deficiency in this area, that is, neurological assessment. In addition, the medical field discounts the human psyche regardless. Most doctors spend so little time with patients they do not recognize the early changes in their patient's personality, mental acuity, gait, etc. They are not taught to interview a patient properly in medical school. Most patients are diagnosed with large tumors after they have become terribly symptomatic. The medical community then exonerates itself with catch phrases such as, "it is a slow growing tumor." After my physician watched me decline over a year, withdrawing me from work and sitting by as I became incoherent, telling me I was depressed, I ultimately presented to an ER with a massive meningioma, brain herniation, and massive cerebral edema several hours after leaving her office. Once I recovered, which really was a miracle, I filed a complaint with my state's medical regulatory board. They ultimately found her care met the standards!! I was outraged. I have since contacted several legislators and hope to bring our state medical regulatory board under scrutiny. My goal is not punitive, it is to recognize the need for remedial education of community physicians. If we allow them to sweep these cases under the rug, the next meningioma or brain tumor patient will not fare any better. I encourage everyone to contact their district senators and congressmen and woman as well as the Department of Health Medical Regulatory Boards to tell them your story. If you want to know where your state falls in assessed leniency for physician reprimand or remedial education google Public Citizen Congressional Watch. This is a Ralph Nader watch group that amongst many interests compiles data on medical regulatory boards. I believe the time has come that meningioma patients demand more research and to help the next meningiopma patient by forcing the medical community to acknowledge it has a deficiency in diagnosing this condition. We can not be quiet about this. Hats off to Newsweek.

I was diagnosed with anxiety and depression for over a year before my brain tumors were found, Now I am celebrating two years of being cancer free.

I was diagnosed with depression and anxiety for over a year before my brain tumors were discovered.

I am a 16 year recurrent M surviovr, 6 surgeries, gk radiation x2 and now chemo. I disagree that the tumor per se is dependent on the other. My understanding is that it is the diagnosis that leads to the depression, anxiety, etc. On another note, if the physicians are not dx a tumor and calling it hormones, that is a different story. Over the years I've never succumbed to taking an anti -deprressant, it was until recently (this past year that I choose to take one because I was put over the edge with tumors that required surgical management as they were in varying locations. It has not been brought to my attention that there is any clinical relationship between anti-depressents and the growth of tumors. If there is a lot of Phsychiatrist and Pharmaceutical Companies woudl be out of business.

thanks fo the article, as a 16 year recurremt m survivor, 6 surgeries (sx), 2 radiosurgeries, now chemo, curious about the anti-depressent comment as I've never taken them until 4th sx which was this past year after enduring 4 of the 6 sx in this past 12 months coming upon 6th on 11/28
kc

Thanks for this article. I've got a meningeoma left front side and also depression. These diagnosises
seem to depend on another, but noone is able to say what really appeared first. Although my tumor still
is not removed, I don't take any antidepressiva for I am not sure if they make the menigiomas grow more quickly.

I too am a meningioma survivor. I had a headache and vertigo, something I had never had before. I had been sedated for pain, when the doctor walked in and said to my husband, "It isn't good, we found a mass". With those words, my world changed. Initially my tumor was the size of an egg. I first had a procedure done called Gamma Knife in the hope to avoid regular surgery. The procedure was supposed to kill the tumor by laser. During a really awful vomiting episode, I told my husband to get me to the hospital, I "knew" there was something else wrong. I was given an MRI. In the meantime, a neurosurgeon had come into the hospital to check on his stroke victim and picked up my MRI by accident. He walked in, introduced himself and then immediately said, "you have hours, days and at most weeks to live, this tumor has to come out" Needless to say, we were stunned. We thought the gamma knife procedure was causing the tumor to slowly die, but instead it irritated it, causing it and the surrounding brain tissue to swell. I had been having almost daily seizures. Even while on two different seizure medication, they still came. I was no longer able to work. The tumor was now so large, it was pressing the brain down onto the brain stem, which controlled heartbeat, breathing, those processes needed for life.
I had surgery within days. I struggled for months with pulmonary emboli, shock and other complications. I asked the nurses if I was going to die, and they said, " you might".
Today I am recovering but have been told I will never recover enough to work again. I have paralysis on my left side, I cannot remember short term. I cannot add simple numbers to make a bank deposit. I cannot handle my own bank account anymore, I cannot remember to pay bills. I sometimes know what I want to say, but am not able to say it. I have encountered complications due to the toxic steroids I had to take.
But I am alive. For having had a "benign" brain tumor, I came really close to dying.

Bebe has written a very true and accurate account of what many meningioma survivors have dealt with because of ignorance in the medical field. I consider myself fortunate that my symptoms were not ignored by my doctor, nor written off as part of a psychiatric problem. As a member of Meningiomamommas.org, an online information and support group I have read about many who relate the same story as Bebe. Meningioma Mommas, which Bebe is part of, also raises money that is directed towards meningioma research. Bebe, thank you for sharing your story.

i thought my lovely mother was a breast cancer survivor after a mysectomy back in 1995. Unfortunately, ten years later the cancer came back as a tumor in her brain meningioma as per her neurologist in sloan cancer society. My lovely mother refused surgery, because she couldn't believe the cancer came back, as she collapsed on december 1, 2006 while spending quality time with her 8 year old grand daughter, who is my princess. I was at work when my princess called me to say " nana is in the bathroom floor and she is not responding". I realise now how depress she was but when asked, she would denied it. Sometimes she would walk backwards while coming forward. i would noticed her inbalance. as usual she would say i'm fine. The tumor is in her left temporal lobe now spreading to the back of her skull. It has been 1 year since hospitalize.The doctors are saying there is "nothing" they can do at this point while she on medication kepra and dilantin. As i sit here and watch my lovely mother laying on her back suffering for a whole year, catching 2-3 seizures per month and antibated everytime. It rips my heart. This is my first thanksgiving that i didn't eat her well season turkey And this is going to be another sad christmas but GOD doesnt give you anything that you can not handle.

Thank GOD Bebe was given her life back. It's sad that many of us who have Meningiomas have gone through similar treatment, being told "it's no big deal" Perhaps Newsweek would send someone to join MeningiomaMommas.org to see for themselves the thousands of members with meningiomas. Thank you Bebe for an exceptionally well written story of your journey in the world of meningioma. God Bless, Bev

EXCEPTIONALLY well written ! This story should be front page around the world. Many meningioma sufferers have to deal with the same treatment; being told "it's no big deal". How many of us try to keep trudging along, with no validation? I've been on watch and wait now for two years for a left parietal M, and these have been two of the hardest years of my life ! I wish Newsweek would publish all of our stories to tell the world ! Thank GOD Bebe's life was given back to her. Beverly

I had a 3.6cm Meningioma removed in Feb 2007. I am close to my one yr anniv. I had suffered migraines for year but my Dr. just kept giving me meds never giving me a MRI. I finally went to a new Dr who ordered a CAT scan and low and behold there was a tumor. My migraines are now gone. Thank GOD!
Becky

I had a 4.5cm Meningioma debulked June 21st,2006...A small piece is adhered to the cavernous sinus and internal carotid artery...My symptoms was when I was pregnant 33 yrs. ago..I had a couple of episodes of vertigo...Everything was spinning..But it went away...I Since my surgery I have no feeling in my right side of head or right side of face and can only eat on my left side of mouth. This is a very serious tumor..Hilda