Just diagnosed and new to all this.

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Just diagnosed and new to all this.

Postby Frannie » Sat Mar 24, 2012 5:10 am

Hello all,
Well I am newly diagnosed as having a Chiari 1 Malformation 12-13mm. It was an accidental find, following on from me being diagnosed with a Brain Tumor (meningioma) in October last year.
What a journey I have been on since then, having a craniotomy to remove 90% of the tumour.
I went to the Dr with episodes of blankness, forgetting what I was talking about and lastly not being able to understand a text message.After a CT and MRI I was diagnosed with a 37mmx32mmx27mm brain tumor. Headaches have been a constant part of my life since I was a teenager (now 46) being diagnosed first with stress headaches then migraines. Over the last few years I have woken with a headache based at the base of my skull on a daily basis. I have learned to live with these, both with and without medication. These have gone since surgery, only to be replaced with the most debilitating, nauseas headaches I have ever experienced.I am starting to learn what brings them on, but haven't figured it all yet. The pressure in my head starts first and within half an hour I am in bed having taken codeine tablets to try and ease the pain. Unlike a migraine, I find that when they are gone they are gone, their is no residual.
I also suffer, and have for as long as I can remember immense pain in my head when I strain on the toilet, yell at the football, cough severly, laugh hard etc. I honestly thought that everyone had this!
I have also experienced muscle weakness in my right hand, to the point I am unable to hold a pen or write for a short amount of time.
I have always experienced problems with temperature control, and at the moment am trying to deal with unbelievable sweats and hot flushes. Is this normal?
So as you can see I am in a bit of a quandry. Obviously my brain tumour has taken the spotlight and all the attention has been focused on it. My Neurosurgeon has ordered a full brain and full spine MRI at my next appointment to get a full pic of everything.
Any suggestions, words of wisdom or symptoms to look out for would be greatly appreciated.
Thank you so much
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Joined: Fri Mar 23, 2012 5:59 pm

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