Panic over.

So last night I posted and I was very worried as people on a FB group were talking about ONS surgery in England and no one seemed to know anything about it being on hold, so I was worried that it now wasn’t on hold and that I just hadn’t been put on the list which is why I hadn’t heard anything. I tend to over think and then start worrying and then I have a hard time stopping it. 

So I emailed my neurologists nurse last night to see if she could give me an update as to what was going on. And then I was going to call today to get a quicker answer as I was worrying so much. But I didn’t even get around to making the call when the nurse rang me instead. Good thing I had set my alarm for half 9 otherwise I wouldn’t have been awake when she called at quarter to 10. 

She told me that the surgery was still on hold and that they had sent in a proposal to NHS England asking if they could perform a certain number of ONS surgery a year. But the NHS rejected that so they have now moved for individual funding, not entirely sure what that means and involves, and they are waiting to hear back about that. 

So it’s not really good news in the sense that the surgery is still on hold but I suppose at least I haven’t been forgotten about. 

On another note, I got an email yesterday from the woman who interviewed me for college saying she had received my personal statement type thing, which pleased me as I was worrying that this would be the one time someone didn’t get my emails. She said I would be hearing from them shortly and that she would see me in September. Which is sounds really promising the fact that she says she will see me in September. It’s not guaranteed that I’ve got a place until I hopefully receive a letter saying I have one, but it’s looking pretty good from what she said, so really pleased about that.

Also the woman who interviewed me said to ring up the universities that I am thinking of applying to and see what the entry requirements are for access courses and if there is anything extra I can do to enhance my application. I was unsure whether possibly my top choice would take access courses as it didn’t say they did on the UCAS website like all the others did, but I rang them up today and they do accept them, so also pleased about that. Basically to get into the universities I’m looking at I need to get at least 45 credits at level 3, with 30 at distinction and 15 at merit or higher. And they didn’t say there is anything extra I can do other than have a strong personal statement and reference. So I’ve just got to concentrate really hard on getting enough credits at the right grades and then hopefully I will be able to go to university, fingers crossed.

Still really scared about going to college and what it will mean for my pain levels, but I really want to do this so I’m going to try really hard to do it. 


4 thoughts on “Panic over.

    • Thank you, I find speaking on the phone gives me so much anxiety but I’m starting to get better at that as long as I plan ahead what I’m going to say. I use to avoid phone calls like the plague!

  1. Hi Sian,
    I’ve read through your story. I’m also a college student recently diagnosed with new daily persistent headache at the most recognised headache clinic in Germany. Similar to your case, all the meds i’ve been on didn’t work yet. The pain is now lasting now for more than two and a half years…

    Maybe i’ve overread it, but did you try opiates ? The doctors at the clinic told me, that there is some clinical evidence, that new daily persistent headache is the only primary headache disorder, which – in some cases – responds to opiates like morphine or oxycodone.

    I’m on some other meds now, which don’t work, but i’m having another appointment at the clinic and maybe they want to try it out ( even though the risk of opiates may be sevevere). But let’s be honest here. I don’t care about side-effects anymore, as long as the meds help even just a little bit.

    Best luck with your plans on college. Your gonna make it !
    Best regards from Germany, David

    • Hi David. Sorry to hear you’ve been suffering from NDPH too! I haven’t tried opiates because I’m on the funding list for occipital nerve stimulation surgery and the requirements for the in the UK on the NHS require you to not have been on opiates. My neurologist also seems to think that going on opiates would in the long run be a bad idea. That I would get some relief in the beginning but ultimately it will make the pain worse, the pain management guy I saw recently agreed with that and said my best bet is to wait for surgery even though the wait is exceedingly long. I was seriously considering going on then instead of getting surgery but then decided against it as surgery if it works would work a lot better than opiates and I can’t have both. But I definitely know the feeling of wanting to try anything and everything to try and ease or make the pain better.
      Thank you, I hope I do too!

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