Hi,
I’m from Yorkshire, UK but I travelled down to London, on several occasions for assessments. After months of research back in 2004, I figured out that I might have POTS, as my history and symptoms seemed very similar to others on the Dinet.org website. So I arranged to see Professor Christopher Mathias and his team, at the national referral Autonomic Unit, in London. My GP made the referral, even though I paid for it privately. I stayed at the Queens Square Neurological hospital for 5 days of testing and Prof Mathias diagnosed ‘Features of POTS’ (an autonomic dysfunction).
Then after much more study (particularly of xrays and MRI’s) I came to realise that I seemed to have signs of head instability so, after I managed to get an NHS referral to the local spinal injuries unit, they put me in a ‘collar and brace’ orthotic device 24/7. After 3 months or so, they tried to wean me off the collar and brace, which I was greatly looking forwards to, as I felt a bit of a burk in it! Although I seemed ok with normal slow and controlled movement, as soon as any ‘pressure’ was put on, to rotate, flex or extend my head (e.g. assisted isometric exercises) the symptoms started up again, so I was back in the orthotic device indefinitely.
In the meantime I also spotted signs, symptoms and features of Chiari (even though I hadn’t had problems in the 48 years before my fall!). So in 2008, I went to The Chiari Institute in New York where I also spent a few days having scans, assessments and procedures. They spotted my Cranio-cervical Instability, along with several chiari related issues, that were compounding the problem and said I needed immediate surgery to fix my head to my neck – but of course I couldn’t afford to have it done in the USA. All these things had been missed here in UK! There are so called ‘Chiari specialists’ here in the UK but I can’t say I’ve had any positive dealings with them. Has anyone else, I would be interested to hear ?
I couldn’t understand why my head was ‘still loose’ 8 years after my accident, as I’d always been a ‘quick healer’ in the past, was there something underlying, stopping me from healing properly? I found that EDS could affect this, then I remembered my mums bendy thumbs! – did she have it? Had I inherited it ? So my GP referred me to UCLH (I think it was Euston Road?) to see Professor Rodney Grahame in 2010 where I was assessed by him and another specialist, and given my EDS III diagnosis (got that on the NHS yey!).
You see, there’s no strong boney junction where your head meets your neck, it’s all held on by ligaments so, if you have EDS/Hypermobility with it’s poor collagen production, many symptoms can manifest because of abnormal movement in this area.
The problem you have with your eyes darting Laura, I’m wondering if instability has something to do with it because I’ve come across this many times before both in my research and on the forums, particularly from those with an underlying chiari type anatomy. Have you ever had a head or neck injury ?
Finally I needed to address the pain behind my eyes, so I asked my GP to refer me to a Neuro-Opthalmologist, luckily there’s a good one nearby in Leeds, called Ian Simmons. He spotted a problem and I managed to get on Diamox, which reduces the intercranial pressure and has been successful at reducing this pain.
Sorry for the ramble! Though some of it may help
Regards
Barbara
(UK)