Discussions By Condition: Brain conditions

Perhaps not misdiagnosed, just mistreated

Posted In: Brain conditions 2 Replies
  • Posted By: Hollianne
  • December 31, 2006
  • 10:52 AM

Hi, I'm Hollianne. I'm a 47 yr old woman who was diagnosed in June of 2005 with a small meningioma brain tumor (size 0.9mm) For all you gun buffs that the size of the flat end of the bullet (round) or pencil eraser. Not very big, by anyone's thoughts and certainly nothing for the neurosurgeons to concern themselves with. First check up it was determined to wait even though I had some uncomfortable issues that made the quality of my life not so pleasant on a regular basis. See, my little 'ol 0.9mm tumor was right up against the motor skills strip on the left side and it was growing much faster than anyone could predict until they did the next MRI in March 2006. These normally very slow growing tumors grow only 0.1mm per year or less. I now had a full 1.5 cm on the surface. My symptoms were significantly worse, but of course the tumor couldn't be causing those, just wasn't possible the MRI showed no hydrocephalus pressure or fluid build up. I should be just fine. Don't know why you have those symptoms, but they are not coming from that small tumor. Even though I didn't look fine and my Right side certainly didn't behave fine. Surgery was finally scheduled August 31. That day came. I was prepped and ready, central line was surgically implanted with only local numbing medication because my veins are very bad - the surgical team is a no show. Some error with his scheduling person, thought my time was later, yada yada ... Actually it was a car accident, with serious head trauma that had happened an hour before my surgery was to start. I'm not going to begrudge anyone emergency medical care. Guess what a neurosurgical adrenaline junkie is going to do? Boring tumor removal or trauma head surgery? Yup, trauma trumps tumor any day and twice on Sundays. A call would have been nice to save the hospital from eating the costs, though. Five days later I returned to the same hospital, went through all the same prep as well as having another central line put place in the same area I had before without the benefit of pain medication since I couldn't have any type of that medication prior to surgery and no one knowing for sure IF the Dr was going to show AGAIN... Well, I did have the surgery that day; the removal of a 1.5 cm x 1.3 cm x 0.8mm Convexity Meningioma from the Left Parietal Lobe. You know, I still don't know all the report of my surgery. I finally had to ask if I had a metal plate or if they were able to put the skull bone back in place. I wasn't even told, and I have 3 titanium screws. Pathology reports a Fibroplastic Meningioma. And 3 months to the day of the surgery on my insistance because the surgeon thought we could probably wait oh say two years or so before I had the first follow up MRI The 3 month MRI shows "the possibility or probablity of tumor regrowth or residual. It is advised to do more comparative tests to former MRI and pre-operative studies to determine the nature of patient's health for continued treatment." The regrowth or residual referred to in the current study series is 0.4mm in size. I will be 4 months to the day post surgery on Jan 5 07. Even if you look at nothing more than just the size of what is growing to how long it's been since surgery, if it grow's only at that speed, it could conceivably be between 1.5cm and 2.2cm before next September. My current surgeon sees no need for alarm or concern. He says it's irritation from the gelfoam he used in surgery. I'm kind of thinking the radiologist they use is pretty top notch. I think he would probably know inflammation over regrowth or residual tumor after all the years in this field, or one would think he could tell the difference and if not, then should he being reading MRI scans at all? It's just slightly amazing that without my former films to compare, the same problems ended up in the very same place and slide sequences in the images. Since I've had to research on my own to learn any info about my meningioma as you can see my team of doctors weren't so willing to share much beyond "its a tumor in the lining of your brain" and beyond "we can take it out if you want," kind of thing I had to learn about this illness on my own. They did not seem to want to take time to tell me. Standard protocol, new treatments, follow-ups from surgery. Even the fact, my tumor could have a genetic or radiation base to it and not anyone as been willing to look into those options. For a returning Fibroblastic Meningioma at the same site, the chance for the tumor being Cancer dramatically increases. If this is a tumor, why wouldn't someone want to be watching this more closely than seeing me in a year or two??? Especially if the stats on the same site increase by 75% - 90% for Cancer? If the stats are true about life expectancy being 12 to 24 months, hey I will have just burned 4 of those months by next Friday. That's not too comforting of a thought. Right now I'm supposed to be getting a referral to UCSF, but they are so slow, it could be June or July before I even see their clinic. I might just fall in between the statistical charts. That'll be 10 months down. Unless someone decides this is worth just a little more of someone's time instead of a hassle to investigate my symptoms, 2007 may just get to be the year my family buries me instead of celebrating my completing the first leg of my Master's Degree. Anyone have any suggestion??

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2 Replies:

  • I'm so sorry you are having such a difficult time. I don't know what advice to give you, but to see a different doctor. Mayo Clinic is very good, and they are located in Arizona, Florida and Minnesota. I know the one in MN treats MANY brain tumors. I also have a brain tumor and am seeking treatment there. Mine is on my pituitary gland, so I don't know much about meningiomas. I was told by many doctors nothing was wrong with me, and finally one ordered an MRI. Just don't give up, and seek out a doctor who is willing to take this seriously. I will be thinking and praying for you, and keep me updated if you can, okay?
    girlfromipanema 12 Replies
    • February 10, 2007
    • 07:32 AM
    • 0
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  • Mine is benign and on the pituiatry also, but was told its inoperable. mine was about 2cm big. Been told theres nothing they can do.
    Anonymous 42789 Replies
    • February 10, 2007
    • 07:28 PM
    • 0
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