Wednesday, November 16, 2011

Meet blobby


Meet blobby. Can you see him there? He is that white spot in the middle of my brain. He really shouldn't be there. He is a meningioma. A tumour.

That's right. I have a brain tumour.

I think I may have mentioned I was having tests done. The dizziness that I felt during the pregnancy with Angus really never went away. I finally had enough of it and got a referral to an ENT who sent me for some an MRI and some other tests. He said that he didn't expect to see anything but it would give me some peace of mind (he actually though the dizziness, nausea, pins and needles etc was caused by chronic hyperventilation from stress).

I had the MRI done last week, and that is not a pleasant experience. For anyone who hasn't had one they are noisy. Like jackhammer in your hear noisy. Halfway through they decided to do a contrast so I knew something was up. Once I got home I was exhausted but had a look at the scans and immediately could see blobby, but obviously didn't know exactly what it was. James scanned the images to show a friend whose wife was a neurologist and she thought it was a meningioma. Cue 4 days of acute stress before I saw my specialist. I felt physically sick to my stomach of what it could be and mean. And Dr Google got a workout. Then yesterday my ENT confirmed that it indeed is a meningioma. These tumours are typically benign and slow growing although he remarked that mine was atypical.

Unfortunately he doesn't see that many and wasn't willing to treat me so has referred me on to someone who does see them all the time. So right now I am in limbo not knowing what to do. Treatment options may be surgery, radiation, or watch and wait. I'm not keen on the last option, but I'm not keen for surgery either since it is in a part of the brain not easily accessible.

Right now I'm shattered emotionally. Charlotte and I both have tonsillitis so I've been trying to take care of her while I've also been sick. I don't know what to feel. I want to scream and cry and get emotional. But then I check myself as it is only a benign tumour. And then I go back to saying, hang on, it's a tumour, it shouldn't be there and I WANT IT GONE!

Of course I also hear Arnold Scwharzenegger in my head saying "It's not a tumour" and that makes me giggle just a little.

So blobby and I will keep waiting to see the specialist.

1 comment:

  1. Hi Janet, Fay here (faybian). I've just had a look at your scans and it kinda looks like it's in a similar possie to where mine has been.
    I've had headaches all my life, so it's been hard to tell where a migraine ends and where a tumour headache begins. Last I was told was that I'd probably had it for about 20 years. Mine was about 5cm X 4cm X3cm (big!) and involved 6 of my 12 cranial nerves on my right side, so it's grown to the brain stem. They took out about 80% of it early last year and had to stop after 12 hours because my vitals were iffy. I was in hospital just over a week and had therapy from every specialty. From what I've heard my experience was particularly bad, so don't assume that this will be yours if you have surgery. I am off to Sydney next month to get the remains removed by Dr Teo.
    Don't ever downplay this one to yourself (I keep stopping myself from doing it), it's big. Of course we're lucky that it's benign, but yes, it's still a bloody tumour (cue Arnie).
    I don't look up Dr Google or even medical texts because they scare the crap out of me and it doesn't get rid of it.
    My email is fgnilsen@msn.com

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