Hello my lovelies,
It has been a while since I posted, but that doesn’t mean nothing has happened in my little bubble. As some of you will know I had one big adventure flying over the the USA to visit a neurosurgeon for a second (or 5th) opinion on my somewhat wobbly head.
Not in a million years did I think I would be flying for 8 hours to see a doctor, but I am pleased that I did. It has been so easy to fall into the trap of ignoring something that didn’t feel right. I have had so many appointments with UK based neurologists who have dismissed any issues present on my scans, and point blank refused to do a neurological exam – even with numbness, balance issues and visual changes. It left me feeling unsure of myself, and even though I could tell that something wasn’t right, I didn’t have the confidence to look into it further.
Having had 3 people tell me there were these issues present, and 3 doctors state that there were no issues on my scans, it felt like I was loosing the will to find an answer. How so many different views could come back from 1 set of scan images is beyond me, but I couldn’t keep going as I was.
So, a little over 2 weeks ago, my dad and I hopped on a plane all the way to Washington DC. It was my first time flying on a long haul flight, and I really had no idea what to expect. Armed with a bag full of pillows, my trusty neck brace and some extra pain relief, I am pleased to be able to say that the flights were tolerable, and although fatigue and pain levels have predictably skyrocketed since getting back, I am pleased that we made the trip.
We saw Dr Henderson who is so much friendlier the anyone I have seen here. The appointment went as I expected; an hours discussion which included a history of my symptoms, viewing the scan images and a full neurological exam (the thing that my UK doctors have refused to do). The neurological exam highlighted a lot of issues and these were definitely more pronounced then they had been during my visit to Dr Gilet a year and a half ago. I have very little sensitivity to pain, no gag reflex, loss of balance on closing my eyes and when walking heel to toe, and abnormal eye movement when looking to the right amongst other things. This shouldn’t have been a surprise to me, but I hadn’t quite realised how much worse things are now to where they were 2 years ago.
He ordered a rotational CT scan to measure for Atlanto Axial Instability which was present, and suggested that I would need both a fusion and decompression to stabilise things and give room for the CSF to flow adequately as my MRI showed the Chiari was causing ‘significant blockage to CSF flow’ – something which I was sure was present, but the UK neurologists swore blindly was not showing on my scans.
This is now the 4th Doctor to state that these issues are present, and I finally feel reassured enough to trust that 4 unrelated doctors wouldn’t be making this up. The UK for whatever reason is unwilling to help me with either surgery or symptom management (I am just being handed from pillar to post by doctors who either say they can’t operate or that there is nothing wrong in the first place), and I am getting to the stage where I am done with fighting the NHS.
So I have finally started to come to terms with the reality of the situation. If I want this fixed, then I will have to travel for surgery and begin fundraising in order to be able to do so. It is a scary amount of money that is needed, and the number is far outweighing anything my family could help me with. My only option will be to make a very public attempt to raise funds, which as an introvert, is about the worst thing I could ever think of doing!!!
I have a couple of decisions to make first about where I will go for surgery, and how long the fusion will be, but once that’s decided and I have an idea of the price, it will be time to start raising money to get myself better.
I really hope this will get me into a place where I am functioning again, and can get into work once more.
As always, I will keep you all in the loop, so watch this space!