Tag Archives: syringomyelia

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Monday was the follow-up consultation from my operation that I had back in December.

I was feeling confident. The signs have been good. I have had fewer what I call "brain fog" episodes, far fewer headaches and just a few migraines rather than one approximately every fortnight.

So, when I got the official news that my cerebrospinal fluid was now flowing correctly and the ventricles in my brain were no longer swollen, it was no real surprise but pleasant all the same. Having the confirmation that the operation was a success meant I briefly got my hopes up that I could go on to have my chiari malformation and syringomyelia treated.

It was but a brief hope.

It seems that the operation I had before Christmas had a better outcome than anticipated. The length of the syrinx in my spinal cord has reduced. It's a small reduction but a reduction all the same.

Previously my neurosurgeon had been fairly adamant that I would need to undergo high-risk, long recovery surgery called posterior fossa decompression. This is not a cure, there is no cure, merely surgery to prevent the condition worsening. For now though, this on hold, with a view for more MRI scans in four months to see if it has improved further. As unlikely as this is, it is a possibility and given how complicated the surgery is combined with it not being needed immediately, it's probably worth doing, no matter how frustrated I feel at the prospect of yet more waiting.

In the meantime, I returned to my GP this morning. I am being weaned off the drug for my headaches and migraines since the original surgery was such a success and have been given amitriptyline to take before bed with a view to help me have a more comfortable night's sleep and ease the pain a little more. I am also succumbing to my body and have decided to order a cane when I next get some money. I worry about what people will think of a young woman with a cane but also think it will be a good thing to have a visual sign of my disability; I know people who walk behind me get frustrated if I am holding them up.

Life seems to have reverted to a state of feeling in limbo once more. Of waiting and hoping and holding on to the positive outcome that I have already had.