I have developed a very painful and dangerous complication of Ehlers-Danlos Syndrome (EDS) called AAI or atlantoaxial instability, and c3-c5 instability (in my neck.) Confirmation papers are at the bottom of this page. Again, there's a lack of awareness, resources and access to care for EDS in many areas of the world, including where I live.
I've been diagnosed with and gradually getting worse with Atlantoaxial instability (C1-C2 instability) with additional C3-C5 instability in my neck and proposed surgery. Though my degree of it is currently 'moderate' it gets worse and is liable to become more debilitating and dangerous as time goes on. AAI is a very painful and potentially life threatening complication of EDS, which I need specialized treatment for. I am living in very severe pain and debility, and slowly losing my functioning. I am needing more and more help for daily living and care. My family and I are drained trying to keep up with the costs of this situation. I can't access the treatment for this here because I need an EDS specializing neurosurgeon. That surgeon is Dr. Fraser Henderson, and he is concerned. My life quality is very limited and poor, especially in addition to other EDS affects. I try to push through what I can, but I'm weak and easily injured, so it is often very difficult and I have to try and be as careful as possible. Going out, taking things in and enjoying myself causes me to pay with severe pain, weakness and tremors for everything I try to do, though any 'joy stealing.' Dressing up can be tough, but it's fun and creative and again, worth it.
In May, I went to meet with Dr Henderson in the USA. I was referred by my physiatrist here, as I have been struggling with neck pain and nervous system problems for a few years now, among other things. I was concerned I was developing C-spine instability, which can happen with EDS, and I was right. After doing a Rotational CT and upright MRI (the two tests required to properly diagnose instability) Dr Henderson diagnosed me with Atlantoaxial Instability of C1-C2 the first two vertebrae in the neck which support the weight of the skull. This can cause a build up of pressure in the brainstem, also, resulting in the symptoms of cervicomedullary syndrome. In addition I have C3-C6 instability which can constrict the throat and breathing.
The neurosurgery would fuse my neck together, so that it cannot move around in a dangerous way, doing serious nerve damage over time, causing severe pain and weakness, and many other bad body symptoms when it subluxes (moves too far out of place, which happens often.) It can possibly dislocate entirely (which can cause death.) Treatment puts me out of severe pain, weakness and gives me some of my life back - even if EDS itself is incurable.
I easily experience these reactions and symptoms which is why I have to be careful with exerting myself physically and being upright for long at a time. If I turn my head too far, it may cause a stroke. Dr. Henderson has warned me of that, and the small chance of sudden death. I have to use neck collars, and sleep in one. It's sort of like living with a 'semi-broken neck' and this is no way to safely or comfortably live. Sometimes I joke that I must've been 'hung at Salem' in a past life and it's returned to haunt me, though this situation isn't really a joke...
Dr Henderson advised me that I could try specialized non surgical therapies (also expensive) and using a neck collar first, but, he did not feel confident that this would help the situation. He felt since it's pretty bad already, it'll only get worse, and recommended somehow finding the means to get the surgery, for my safety and quality of life.
At this time c-spine is gradually becoming more unstable (and most often this becomes worse without treatment.) The pain can be very severe, and other alarming and scary symptoms especially after I exert (weakness, tremors, heart irregularity, nausea, vertigo, feelings of choking, difficulty breathing etc.) I am unable to fully functionally use the regular Vista neck collar, as my neck is too petite and my jaw is very sore, but I have to sleep in it at night for safety. I'm not in a collar 24/7 as of yet, but I use supportive collars most often and am very careful with moving my neck. I have become conditioned to that, even when I don't have a collar on. My neck has actually become very stiff with a total loss of curve, to try and 'keep itself' together.
I am looking into getting a custom made neck collar at this time. It's looking like my only hope to get treatment and have a second chance at life is to raise the funds to support this and surrounding needs (see distribution of goals' funds.) I don't have any other resources to draw upon, so I am pushing to reach my goal, which also helps spread my message (something I genuinely want to do, also.)
(confirmation papers provided below. *please again note that my first name is Natalie but I go by my middle name.)