my vision has got worse, I see static, flashing lights, after images and fireflies.
Hi Brenda,
I would try and see a neuro-opthalmologist about these symptoms. I’ve just had an appointment with mine and he asked me specifically about the flashing, which I now rarely get. He was the one who spotted the swollen disk in me and prescribed the Diamox, which was a help in relieving the eye pain and pressure, etc . . . it’s so worth a try. So to recap:
Off to a Neuro-Opthalmologist for Diamox to get the intracranial pressure down
Philadelphia collar to restrict movement whilst repair takes place and allow better CSF flow
Vitamin C throughout the day (with increased protein) to help form good collagen and repair ligaments and hopefully help slow down or improve scoliosis
Epsom Salt baths twice a week to help replenish Magnesium levels often depleted when people take pain killers or antacids regularly
(the body will only absorb what it needs)
Ensure at least the recommended daily requirement of salt (2-3 grams) is consumed daily.
Get your vitamin D levels checked, we are often deficient
To answer your pm questions:
Help in the UK was very difficult to obtain. I only managed to get to a spinal injuries unit after studying anatomy, MRI & X-ray reading, discovering the anomalie myself, and then chatting over the internet to a lovely neurosurgeon in Germany who had written papers on CCI – he advised me to get to a spinal injuries unit.
Don’t quote me on this, as I’m a little hazy at the moment but I think it was Prof Christopher Mathias, of UCLH London, who advised me to see Prof Grahame (also in London) to see about the possibility of EDS involvement – but I’m not really hypermobile, nor do I have stretchy skin like some, only slightly bendy legs (scoring 2 on the Beighton scale) plus the autonomic involvement I think made me qualify for Classic EDS on the new (Brighton) scale. My mum could do the ‘thumbs on wrists’ thing but not me, or any of my children.
Regarding Chiari involvement, at The Chiari Institute in New York, they said I had only ‘low-lying cerebellar tonsils’ which is what some people refer to as Chiari 0 – BUT, I know first-hand that this fact plus the Cranio-cervical Instability (CCI) they diagnosed, spells TROUBLE! Directly after delivering their diagnosis, they said I needed fixation surgery.
Regards
Barbara
(UK)