Hi Barbara
I wonder if you could help me with a few questions here please
I was also dx by a Prof Aziz in London who then moved me onto Prof Mathias and i was lucky, i only had 3 days of Autonomic testing, but it was not the easiest few days of my life, and i had a very serious mast cell reaction to the stress test i had to do which took me weeks to get over, that on top of TTT!!Not an easy time at all but gave me some answers that took years to find!
I suffer with chronic daily headaches, with all the symptoms of neck and shoulder pain and Hydrocephalus. Diamox has helped grately so i know there is an element of pressure going on. I have POTS/EDS after ruling out CFS leaks with an mri, they did notice some disc compression although mild and Epidural lipomatosis. But again they said this was “normal”. After reading up on Epidural lipomatosis it doesnt appear to be normal at all to have as a 29 year old female, anyway they dx me with Migraines vertigo, but i feel there is more to the picture.
Can i ask what should show up on an MRI if you suffer from head intability? I have been sleeping upright with a soft collar and the help it has brought is huge, i am wondering if i too could be suffering with this? Neck movements, be it up or down or left to right can make me so nausea that i loose strength in my whole body, my headaches always start with terible pain in my shoulders and neck. As the day progresses the pain gets worse, always.
What worries me is that although my old nuero from the national nuerology hospital said there was no chiari, he actually sat infront of me when he checked over my images as they had been sent across that day, and he spent 2 minutes looking over them.Is this satisfactory? Also i have read to be sure of a chiari malformation you should be in a upright mri. Do you know how true this is?
I suppose the best way to see if you think you could be suffering from cranial instability would be to wear a rigid collar. Would a neuro even know what to look for if i bring this up at my next appointment?
Many thanks