Upright MRI in London.


Yesterday my Mum and I went to London and I had an upright MRI of my Cervical Spine + Cranio-cervical junction. After the MRI the Professor came to talk to me and said he had been looking at the images as they were coming through. He asked me if I had been in any falls and knocked my head when I was younger and I thought about it and couldn’t remember anything significant and neither could my Mum. I was always a clumsy child who would fall over the slightest thing and was covered in bruises but I couldn’t think of a particular one where I had hit my head. He then went on to ask if I had been in any accidents and I told him about a car accident I was in when I was 18 and that thinking about it, it was when my symptoms seemed to get worse. He then began to tell me what he had seen in the MRI but I’m not very good at explaining things so I will share a bit of what the report says. When making assessment of my upper cervical spine in cranio-cervical junction, especially the relationship of the atlas (C1) and axis (C2), there is a significant abnormality. There is an element of malalignment of the atlas over axis when looking straight ahead. When I look to the left, dislocation at of the left facet joint of the atlanto-axial joint becomes evident.
The atlas (C1) and axis (C2) are the two topmost vertebrae. The atlas along with the axis; forms the joint connecting the skull and spine.

I have only done a little bit of research and I’m still trying to get my head around this (no pun intended). These images really helped me understand it a bit better so I thought I would share them.
UC-Care-health-vs.-sickness Head-and-neck-Misalignment brain


If the atlas vertebrae is out of alignment it can cause lots of problems and have a “domino” effect on the entire musculoskeletal system, the circulatory and the nervous systems, by creating imbalances and dysfunctions in various parts of the body.
I will try to write a post about the effects of atlas misalignment in more detail when I am feeling a bit better, but I just wanted to give an update on my MRI results. I am really quite confused and not sure what to do next after these results. The Professor told me that he isn’t aware of any surgeons in the UK who are comfortable to complete surgery to fix this on someone with EDS. He gave me the details of a chiropractor but I am nervous about seeing one and it will cost a lot of money, as you can’t get a chiropractor on the NHS.
Thank you for reading this and I will try to keep you all updated. If anyone has any advice or experience with the problems I have listed above I would really appreciate it if you could message me.
Love & Hugs,
Charlie x





On Tuesday I had to go for a flexible cystoscopy to have a look in my bladder. It was uncomfortable but everything looked okay and there isn’t a physical blockage causing my urinary problems, which leads us back to thinking it’s due to signals not being sent to my brain etc. I now wait for a follow up appointment with my urologist to discuss this, my MRI results and the sacral nerve implant. If I’m honest I’m really nervous about the thought of another operation but I’m going to make sure that all my questions are answered and all tests are done before I even think about it…
Today I went to an appointment with my cardiologist. He was a lovely gentleman but couldn’t really give me much more advice other than to lift my bed at an angle, drink more water and increase my salt intake. He has also put me on some new medication which hopefully will help, so fingers crossed!
Hope you are all well.
Love & Hugs, Charlie.