I don't have any of the things we thought it might be, no brain tumour, no BIH, no abscess. What I do have is a congenital malformation known as "Chiari 1 Malformation" it basically means my cerebellum (The bit of braina t the back) has herniated and is protruding into my spinal canal. Because of this it is basically causing a blockage or plug so my spinal fluid can't drain properly hence the papilloedema, the blockage is causing extra pressure in my head from the fluid not being able to drain properly. From what the report ways it is also pulling down slightly on my 4th ventricle.
I stole this from the Chiari Institute website, on the left is a normal brain on the right is one with Chiari Malformation so you can understand a bit better :)
ETA: oh, just noticed you can't see the picture on the right totally, the red bit is where the problem is if you can't see the words ;)
So, that's where we are right now, I am going to the Neurologist on Thursday to find out more and see where we go from here but it is basically controlled by drugs (Hopefully not Diamox though, I miss my Coke! LOL) or surgery so will have to wait and see what he wants to do.
Thanks for all the thoughts and things, it has been much appreciated :)
Mel
2 comments:
Wow Mel, what a journey you've had!! So glad you don't have a brain tumour. Just wanted to tell you that my friend's little girl (aged 2 and half) was diagnosed with this same condition at about 12 months of age. She is just regularly monitored at this stage although shunting is a possibility down the track. So bizarre, as you're like the second person I know now to have this condition. Sending you much strength on this journey xxx
Well Mel, I am so glad that you have some answers. The not knowing part is rough, sorry that it took so long to find out what was going on. Now that you know what is going on, you can get the care that you need. Here is to some solutions and a fast recovery :)
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