Can you hear me?


Where are we? So, I still haven’t been to the GP about the tremors – I did try and get an appointment but I can’t get a routine appointment with my GP until the end of October and I am due to see her anyway at the beginning of November for my usually 2 monthly catch up. I figure this doesn’t warrant an emergency appointment, waiting 4 weeks isn’t really going to make any difference. The tremors are still there, but I find keeping my hands busy helps, so I am doing a lot of knitting in the evenings.

Last week I also had a routine audiology appointment, about 5 years ago I was diagnosed with otosclerosis, which effects the bones in my ear and in turn the hearing. I now know that this is part of the EDS. Anyway, the good news is that my hearing doesn’t seem to have changed that much. I tried hearing aids for a while when I was first diagnosed but I really don’t get on with them. I find between that and my glasses there is too much pressure behind my ears and it gives me a headache. I also find my own voice sounds very peculiar. At this stage my hearing loss is mild so I can cope without hearing aids and rely on lip reading, body language and saying pardon a lot! I have been referred back to my consultant though as I am getting some tinnitus and dizziness and they think it is worth checking out. Now this could be related to the tremors or it could be entirely unrelated. I am glad however that I am seeing the audiology specialist as I have been reading about a surgery for otosclerosis that has a very high success rate, so I want to talk to him about that while I am there.

The other big thing for last week was that I had the spinal injection of steroids and anaesthetic. Well it made an amazing difference for about 5 days and then it started to wear off. I am not sure what this means exactly in terms of surgery but it means that the area we thought it was is the area that is causing the problems, so that’s good. I have an appointment on Monday (tomorrow) with my spinal consultant to go over what this means and where we go from here. I have now fully prepared and got my head around the fact that I might well be heading for spinal surgery, though I am really hoping that if I am they can do the repair of the fracture with bone grafts rather than fusing the vertebra together. I guess I will be able to update further tomorrow…..

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