Feels like I haven't written anything here since the dawn of time, think it's been about a year or so!
Anyways, 2016 was a very rough year for me, and this far 2017 has not been much of an improvement if any.
I have been experiencing a decline in my condition for a while now, along with being under a lot of stress, so I'm basically bedridden and burnt out with very little energy to do anything. Pretty much isolated myself from most things and most people to cope at all.
My neck has been getting worse lately, as have my back. Last week I saw a doctor about it at the local clinic and I'm finally going to be referred to see a neurologist and urologist after four years of mentioning I need to have my neck, spine and bladder further evaluated because I can not live like this! The doctor I saw is also going to talk with my regular doctor and the boss of the clinic regarding sending me for a new MRI as I'm worse off now than I was in 2013 when I had one last time, that along with the fact no doctor trying to help me would be helped by only having access to images that are so old!
I'm also looking into seeking help abroad as there's absolutely no competence on CCI and AAI in Sweden, and that is what I suspect that I have. Based on some finds on my 2013 MRI and my symptoms I could have both CCI and AAI, I am currently in an Aspen Vista neck brace a lot of the time to keep my head in a neutral position even when I sleep, and when I'm up it's to help holding my head up because it doesn't take long before my head feels like a pumpkin on a toothpick. I may also have tethered cord syndrome in my lower back, and in the case of occult tethered cord which is there but not visible on images, there's also no competence for it in Sweden. If you're not familiar with CCI and AAI, this link is a good start as it explains it pretty well.
I'm basically facing the possibility of needing at least a C0-C1 fusion, maybe more, and if that's the case it can not be done in Sweden, I'd have to go to Spain or USA which would not be funded by the national healthcare system in Sweden, that basically means I have to start a fundraiser to put my life in kind strangers hands, to have a surgery that could either save my life, or end it. There's no getting around it, surgery that close to the brain and most upper part of the spinal cord is very very dangerous if something goes wrong either during surgery, or after. But it could also be just as bad to not have it done if it needs to be done as untreated CCI or AAI can cause permanent nerve damage, paralysis or stroke.
I'm also facing the possibility of needing spine surgery to release the tethered cord if it is confirmed, and maybe fuse some levels due to disc issues that causes a lot of pain.
Am I terrified? Heck yes! I'm as afraid about this as I am around the current political situation in USA... A situation that also affects me directly as I do not feel safe going to USA at this time even though that's where the best doctors are, doctors I'd feel safer with as they have more experience with these things.
Considering I'm so exhausted and in such a bad condition, I really don't know how I am supposed to find the energy to manage a fundraiser and I don't know anyone who could really help me with it, or maybe there is one I'd trust enough. But still. I do not know how to manage...
