There’s something wrong with your brain, part infinity – Anna Spargo-Ryan

There’s something wrong with your brain, part infinity

There’s something wrong with your brain, part infinity

It’s been a weird six months. What started as investigation into a flashing light in my left eye has devolved into a general decay of my body. I went to my doctor a couple of months ago because I had weird hot patches on my legs. Not actual hot patches. They weren’t hot to the touch, my brain just thought they were hot. Then I started to have sharp pin-prick pains in my toes, and numbness in my skull. Muscle weakness. Headaches above my eyes. Muscle spasms. Pain in my neck. Blurred vision. Then I became so fatigued that I was napping on the side of the road on my way to work and sleeping 10 hours a night.

So we did some blood tests. Heaps of them. Upwards of 20 different tests.

Yesterday I went for a follow up with my doctor. He said to me: “Your kidney function is normal. Your thyroid is normal. Your iron is normal.” but he didn’t say “Everything was normal.” And everything isn’t normal.

My brain is releasing excessive amounts of prolactin. That’s the responsibility of the pituitary gland, which is right at the bottom of the brain in the middle of the skull. It’s kind of the boss of the hormones. Sometimes, people get pituitary tumours. They present with things like vision issues, fatigue, weird body sensations.

Twelve years ago, I gave birth to a tiny little baby. She was perfect. I’d never had a tiny baby before so I spent most of my time sitting on my couch, just watching the way her mouth moved. When she was five days old, I went blind. The hospital sent me for an emergency MRI, where again, everything was normal except didn’t my pituitary gland look a bit tumourous? But they didn’t follow it up, and I assumed it was a smudge on the scan. They put it down to ocular migraines brought on my an influx in hormones. It happened a few more times after that, and once when I was pregnant with Lily.

I’ve spent the years since then living with a variety of funky symptoms. About six years ago I realised I couldn’t really smell anymore. I can smell what I’m cooking, if I’m standing right next to it and it’s full of garlic. I can tell, when I open the front door, if next door has a fire going. But I never know when the cat litter needs changing, or if a shirt needs to be washed. My kids have become very adept at sniff testing things for me. I have lots of eye issues, like diminished peripheral vision, blue flashes, stars. Sometimes I have days when I have double vision, sort of. It’s as though the image is duplicated when my brain processes it, but I don’t actually see double. And obviously there are the years of mood fluctuations, depression, anxiety, general misery and fear.

The combination of all of these things means my doctor thinks I have a pituitary tumour. A brain tumour. “It’s really the only explanation,” he said, because he likes to make sure I have all the information but also that I expire from worry. I have a list of people to see next: an endocrinologist, an ophthalmologist, a neurologist. There are good news bits: pituitary tumours are almost always benign; they can almost always be removed with surgery. I mean, you have to be awake for the surgery so they can ask you questions like “can you still see the colour blue?” and “can you feel your fingers?” but it’s usually operable nonetheless.

It’s a lot to process, and I feel strongly conflicted. On the one hand, maybe I don’t have to be quite so depressed, tired, moody. Maybe I’ll get back my sense of smell! Maybe my vision will improve! There are ways in which the idea of it is even intriguing. But on the other hand, if I have had this since the original scan 12 years ago, how much of what I know about myself is me, and how much of it is this cloak of hormone imbalance and pressure in my brain? I feel totally ill equipped to understand the impact this might have – not just on my body, but on my identity.

They take pituitary tumours out through your nose. Your nose.

 

13 Comments
  • John James

    July 24, 2015 at 12:13 pm Reply

    What to say…? It’s such a mixture of good and bad… bad that you have a tumor, but good that you now know what might be the cause for your health issues…

    I’m not one for praying or hoping or wishing, but I really want to see you come through this healthier and happier – I wouldn’t worry too much about identity issues – this tumor may have contributed to some of your outlook over the past years, but so will the treatment and recovery. We’re all portraits of our individual experiences, and this is another chapter. You might not be the same “you” as before, but you will still be “Anna”. That will never change.

    xx

  • Kelly Exeter

    July 24, 2015 at 12:27 pm Reply

    Farking hell Anna!!!

  • Rae Hilhorst

    July 24, 2015 at 12:31 pm Reply

    Wow, say’s a lot for getting second opinions. It will be very interesting to see how you feel and the changes you may see after your surgery. You are strong the world needs more of you xxx

  • Rebecca Bowyer

    July 24, 2015 at 12:39 pm Reply

    Oh, Anna, how freaking awful! I hope it all goes well for you x. Maybe they’ll remove the tumor and you’ll feel amazing. I’ll cross all my fingers and toes for you xxx.

  • Jodi Gibson (JFGibsonWriter)

    July 24, 2015 at 12:50 pm Reply

    I am sitting here wondering what I could possibly write, ‘there goes me worrying about me again.’ But this is about you. I don’t want to see you go through any of this unless I can see what it looks like on the other side. But I can’t.
    In situations like this we say things like ‘you’ll be fine, you’ll get through this, you’ll finally be healthy and happy’. And I want to say all that, but I also just want to give you a hug. As unhelpful as that is.
    And as JJ said, you will always be you. You are the youest you you can be, then, now and always. Much love. x

  • Kristie

    July 24, 2015 at 1:04 pm Reply

    Shit! I don’t really know what to say other that Shit! Shit! Take care of yourself Anna. I hope they get rid of the nasty bugger and you feel a lot better.

  • Helen K

    July 24, 2015 at 2:54 pm Reply

    Oh, Anna! Well, I’m going to think of this as a positive – hopefully in fixing this, hopefully it will address a lot of ongoing issues for you. And as for identify – I suspect you have forged a strong one already, and maybe you will be the same, except with less fear (and wouldn’t that be great?)

  • Reuben

    July 24, 2015 at 4:24 pm Reply

    Anna, I have been through something similar recently. Not the tumour part, not having to worry about whether or not I have something life threatening and all that goes with it, but this part:

    “if I have had this since the original scan 12 years ago, how much of what I know about myself is me”

    … absolutely resonated. I recently learned my own mental health condition/issues were not only misdiagnosed 20 years ago but that I have been receiving a contra-indicated treatment. That is, not only was the diagnosis wrong, I was given something to fix it that actually made it worse. But it’s the existential/identity bit that’s shaken me the most, absolutely. Being on new, ‘appropriate’ drugs has made me look at *20 years* of behaviour/personality distortion with fresh eyes and it’s ineffably challenging. I barely know what ‘I’ am or was at the moment. Hardly know where to begin.

    Wishing you all the best with your pursuit of the truth and good health.

  • Christie-Childhood 101

    July 24, 2015 at 9:33 pm Reply

    Wow, just wow! Sending strength and healing thoughts for the days ahead.

  • Ruth

    July 25, 2015 at 10:13 am Reply

    Well crap. I’m so sorry that you’re going to be subjected to tests and procedures for the next while (through the nose, holy cow) but I hope it marks the start of a time when you’re going to feel a whole lot better and more energised. You will still be absolutely you.

  • Amelia M

    July 25, 2015 at 7:36 pm Reply

    Oh love. This sucks. The uncertainty sucks. I have a dear friend, Steph, who had a pituitary tumour removed six years ago – if you’d like, I could put you in touch. xx

    • Anna Spargo-Ryan

      July 25, 2015 at 7:55 pm Reply

      That would actually be wonderful, if you think she wouldn’t mind. Thank you xxxxxx

  • Rose Wintergreen

    July 26, 2015 at 3:38 pm Reply

    Oh, Anna! I’m so sorry to hear you’re going through this. Sending you love. Please let me know if there’s anything at all I can do for you. xx

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