Follow Up and Limbo

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.

12 thoughts on “Follow Up and Limbo

  1. You have to be so strong to have gone through all this and remain positive and willing to help others with your story! I hope your doctors have more positive things to say in the coming months. Don't be worried about using a cane...I think people are a lot more understanding about these things than we imagine when we're self-conscious. A pleasure to have come across your blog! xxx
    Kanchan @ The Intrepid Misadventurer recently posted..Keep Calm and Waste Less!!My Profile

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  2. So pleased you've had good news. I know how frustrating the waiting is, but how amazing would it be if you didn't need the high risk surgery at all? I don't think you should feel shy about walking with a cane. Age has no bearing on disability and like you say - people might be more understanding if they can see a visible sign. xx
    Emma Day recently posted..Silent SundayMy Profile

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  3. Some good news then, and brilliant that you're weaning off the tablets for headaches. Must be a relief that they're easing. A cane's a good idea - will probably make you feel more confident as well, even if you don't think you're nervous, underneath there'll probably be a bit of a relief there to have the support if needed.

    Hope you continue to get positive news and easing of symptoms #blogclub
    Emma T recently posted..Pre-school activities: colour sorting with Plus PlusMy Profile

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  4. Lovely to hear you've had positive news I bet even when you expect it it's a nice relief to hear it! With the cane, who cares what people think! The only people who would judge someone about using one are people it's not worth worrying about and they must be in a small minority. If it helps you that's all that matters x
    Carly Markham recently posted..18 weeks pregnantMy Profile

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  5. I'm glad to hear you have had some success with your operation. It must be a relief to not have so many migraines. I hope you are not waiting too long for further treatment. I know all too well what the waiting is like xx

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