Where did the year go?


Golly, well it has been an incredibly long time since I have written a full blog post, in fact it was almost this time last year that I wrote one about EDS. 2019 has seen 6 operations, 2 on my spinal cord, 3 on my hips and 1 to reinsert the PEG-J tube, I also had more hospital appointments than I care to count. I have also focused on self-care this year and taken up a number of new hobbies, including singing and art classes. Next year looks set to be a big year – it’s my 40th birthday, we have 2 amazing holidays booked in to celebrate that, and we’re already planning the surgery list for 2020.

As you will no doubt be aware a couple of weeks ago I spent a day in London having 6 MRI scans. Firstly the good news, my brain MRI and angio was all clear and I definitely have not had a stroke. The next MRI showed that I have a disc out at C5 /C6, so in the first full week of the new year I am going into hospital so that my spinal surgeon can inject the nerve in order to test to see if it is the disc that is causing the problems I am having. I have to have 2 separate injections on different days and then a discography, which is where they will inject fluid into all of the discs in my neck, one at a time until it really hurts and then we will know which disc is causing the problems. They do C-spine injections through the front of your neck, which sounds absolutely hideous. All of this should help my surgeon determine if they can do anything and if so, what they will do.

I also had an MRI and CT of my legs, as I went to my hip surgeon, who is also a knee surgeon and said to him that I was getting pain in my knees and they were unstable. I was fully expecting him to say my patella is unstable, which it is, but unfortunately he noticed something else. What he called a severe deformity when he was examining me, hence why I had the MRI and CT scans. So, this is probably a very crude explanation, but, the knee and ankle joint are supposed to align, this is 0°, anything up to a 15° rotation is considered ok, my right leg is at 44° and my left at 34°. My body has been naturally correcting this but it's now starting to cause issues. Apparently, it is one of those things that is normally picked up when a child first starts walking and because bones are soft at that age it can usually be fixed with braces. I am well past the braces stage; they are going to operate on my right leg mid-February. They are going to break both the bones in my shin, take a wedge of bone out of them and then rotate them, so everything is aligned and then use plates and screws to fix it all back together again. I have been warned that this is a big surgery and will hurt, so I am going to make sure that I build in plenty of recovery time.

I have some fun, slightly terrifying things to look forward to next year as well. In February I am singing at an open mic night, not entirely sure why I agreed to do this but am going to try to get over my nerves and enjoy it. I am also hoping to get back to archery very soon, I have not been able to shoot for 3 months because of the surgery done on my spinal cord. As I shoot sitting down, the leg surgery shouldn’t impact archery too much.

I wish you all a very happy new year and may 2020 be a great year.

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