Hi Nina,
NHS Neurologists here did nothing at all (and I saw several!) except take down my history and look at me blankly, one BUPA neuro offered me Amytriptyline (to make me so woolly headed that I’d stop complaining!) – but I declined and I’m glad I did because it’s not recommended for POTS.
I had no option but to take matters into my own hands, it felt like I was slowly slipping off this mortal coil, to me it was a race against time. Before my accident I was a freelance Systems Analyst, so I simply took the approach that I would for any other contract won.
I had to educate myself with the ‘tools of the trade’, which in this particular case were anatomy, radiology, neurology, biomechanics and some systems biology – thank heavens for the internet! I bought stacks of text books, a working model of the skull and vertebrae and a CD from a trainee doctor on how to read MRI’s! It was a major task, it wasn’t easy by any means.
I obtained copies of all of my medical records, x-ray and scans. I sought anyone with knowledge who would interact with me by email, I was surprised who stepped forwards. So, with ‘necessity being the mother of invention’ and all that, I grew more and more familiar with anatomical terms/landmarks and with was normal and what was not.
I took a table with a glass top and made a make-shift ‘lightbox’ for viewing and photographing my x-rays, so I could load them up onto computer. I also pegged all of my x-rays and scans on a line that I fixed up in front of my patio door, so I could look at them ‘in series’ rather than individually.
I found loads of things they’d missed – fractured base of skull, 2 fractured vertebrae, damaged/thickened transverse ligament, swollen tissue, possible fractured condyle, a progressing empty sella, a seemingly twisted brainstem, an abundance of fluid in my brain, Chiari 0 (low-lying cerebellar tonsils) but most important of all – Cranio-cervical Instability.
Now I’ve spoken with many people who have chiari 0 (which isn’t acknowledged by many in the medical fraternity) but these these people are really symptomatic and not getting any help. They are not solitary cases. I couldn’t believe why so many of us were being fobbed off, or treated as psychiatric cases, so I decided to look at ‘the state of neurologists’ in the UK. I couldn’t believe what I was reading, that there was a great shortfall of neurologists so the powers that be had recruited doctors who were trained/had been practising in psychiatry! What chance had we got?!!
I’ve had to sleep upright for 10 years now and this and my philadelphia collar have been my saviours. A word of advice about the Philadelphia collar, you need to get several linings with it (they’re called coolmax) and change them, plus wash the collar every day, otherwise you overheat and sweat and develop sores – you know how easily our skin breaks down. You have to put up with a little overheating and restriction I’m afraid but the benefits truely outweigh the downside.
You need to avoid stretching your neck with a collar as, if you have craniocervical instability, this results in a stretched brainstem – which is NOT good believe me. You need a collar that fits you comfortably, you’re more likely to keep it on that way.
Your head in flexion, particularly if you can touch your chest with your chin, is a SERIOUS NO NO! It has to be avoided at all costs. No wonder it accelerates your symptoms, this is when the brainstem is pinched the tightest and it can cause neurogenic shock, so don’t allow it happen. I cannot stress this point strongly enough.
If I can suggest an explanation for the sudden migraines, when your head is in this chin to chest position, remember that the area which is being compressed is also the passageway where the cerebrospinal fluid circulates between your head and your spine. In your case, this space is already seriously crowded with brainstem and hind-brain tissue so, if you compress this area, the fluid is displaced, the flow stops and the pressure will build up inside your head.
This can cause head pain, possible eye pain, dizziness and I believe it could induce or worsen tinnitus, you might begin to hear blood wooshing in your head as your circulatory system starts to struggle against the raised pressure. The subtle brain compression could cause nausea, tingling, numbness and eventual paralysis, if not corrected. I know because I experienced this many many times.
Sorry for the small novel!
Regards
Barbara
(UK)
P.S. The C2 peg-like bone, if it bends backwards is called a ‘retroflexed odontoid’.