Life Moving Forward At Last?

I haven’t updated the blog with a personal update in a long time, so after having some treatment, and having something to update you with now, I thought it would be a good time to do just that.

A quick recap for anyone who isn’t aware, or who may have forgotten because of the length of time that has passed, I live with the genetic condition Ehlers Danlos Syndrome which means that, amongst other things, I’m bendier than the general population. The main problem for me at the moment is that my neck is giving me problems. A lot of problems. There is so much pain to deal with that I struggle to manage on a day-to-day basis. It feels too heavy for my neck, I can’t sit up working at my laptop for more than two hours at a time without it being agony and my social life in nearly non-existent.

I’ve sought out help within the NHS and have been fobbed off by an orthopaedic surgeon and a neurosurgeon which then sent me flying off to the US in April, where I knew there was a neurosurgeon who understood the impact of EDS on the neck. How it makes it as unstable as the other joints in the body. It was there that I was finally validated and he diagnosed me with a real neck problem.

I flew home feeling better for the validation but knowing that I needed to find a neurosurgeon here to take me on and believe in me or I’d have to raise a lot of money to go back to the States for surgery to fuse some bones in my cervical spine.

Well, with a little investigative work I found a surgeon and asked my GP to put the referral in. I kept my fingers crossed. The consensus by many (typically) women in the country is that they are not being recognised as having a problem by any neurosurgeon they see.

I have been so lucky, the neurosurgeon is the loveliest man ever. He listened to me and he understood what I was saying. He has also operated on EDS patients with these head/cervical spine issues! And he was willing to help me.

On Monday I had injections in the area he believes is the problem. The point of these is twofold. They are to relieve the pain and if this happens, then it is diagnostic, it shows he has the correct area C1/2 and he ‘might’ go ahead and fuse them. I feel like I’m in safe hands. At last.

This journey, for my neck, has only been going on for about 4 + years.

Living with a chronic condition is tiring. But, I’m lucky in that I have my writing. It flexes my brain, keeps me ticking over when the rest of me is struggling. I also have great support at home and this is massively important. I couldn’t do what I do without it.

The great news, though, is, that I think the injection is working. I’m not feeling the pain I am used to feeling. I’m hopefully optimistic. I don’t want to start celebrating too soon and it all come crashing down around me, but yes, I am feeling some relief. My neck isn’t my only issue, I still have the rest of my body fighting against me, but it has been the largest and most debilitating issue of my life for the last 4 years. To get relief from it is absolutely indescribable.

Please do keep your fingers crossed for me.