Still Rocking


Well it looks like I am going to be having spinal surgery in the middle of November. My surgeon and I have decided to go for a repair of the fracture to try and preserve the discs for as long as possible. There is a really good chance that I will need a fusion in the future but let’s start with this bit first. If I am perfectly honest it is a little daunting but I have had major surgeries before and will have them again so I guess I just need to buck up and get on with it.

This week I had contact from a media company who want to do a case study on someone with EDS so that’s pretty cool, anything I can do to raise awareness of the condition I think has to be a good thing. The change in the weather is really noticeable, it certainly makes the arthritis and the joints play up.

This week I also saw my audiology consultant and a little good news, my hearing loss is still mild and I am going to continue, with their support without my hearing aids. The reality is that I hadn’t actually worn them for about 4 years anyway. The bad news is that he doesn’t think the dizziness and tremors are being caused by an inner ear problem. I am going to have to give in and go and see neurology, which if I am perfectly honest I knew I had to do I was just putting it off a bit for fear of what they might say. I have made an appointment for the end of the month so we will see.

I also saw my ankle consultant this week, as expected we are sorting out surgery. I also had an MRI of both my ankles this week to make sure that the laxity and dislocations haven’t caused any further damage that needs fixing. Whilst they are in there they might as well get it all done. When I go back in a week or so to get the results we will also be signing the surgery consent forms, so I will go through with him then exactly what his surgical plan is.

The far more exciting part of the week is that I actually went out, to a Nickelback gig, which was great. It’s the 3rd time we have seen them and they are always brilliant. The staff at the NEC were amazing and there is a small cordoned off section for wheelchairs. There were a couple of bad episodes of chest pain and I could see my husband eyeing up where the onsite paramedics and de-fibs were but other than that we had a good time. As much as I hate using my wheelchair, I would rather use it than have to stay at home and miss out.

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