Gastroparesis and Ehlers-Danlos Syndrome

I know I left Part 2 somewhat in the middle of the consultation, so I'll try and start where I left off and see where it goes. Obviously there are inevitably going to be more "parts" to this series the deeper we go, so bear with me I WILL get it all down on here eventually. To sum up the last post in a few words, the diagnostic term for my neck issues is, Cranio-Cervical Instability. Naturally our next question was, "What can we do about it and what does it mean for the future?" This is where I struggle to explain. When it comes to brain/spinal surgery the decision process is not so cut and dry! So, the only way to actually fix the instability in my head and neck and prevent any further neurological damage would be to fuse my skull and top two vertebrae together using metal rods (permanently immobilising my skull C1 & C2) and remove the excess tissue that is causing the brainstem compression. Obviously this is a very risky procedure and not one...

Click here for #Part 1 Most of you will already know through my blog, I'm not keen on surgeons ( to put it mildly ) so that key moment when I first meet a new one always feels like a very tense and anxious exchange. Years of plodding through the various health systems has unfortunately made me very cynical so it takes a lot to win me over these days. ... However,  Dr G had a very open and friendly manner about him which was instantly reassuring, we felt like equals from the offset so any tension we had felt beforehand quickly disappeared. He managed to hit my top two priorities on the head in pretty much the first sentence! He explained that he had been very interested in my unusual presentation and was keen to understand more , which is always difficult through email conversation. (not exactly a demanding list but surprisingly hard to find, especially among the surgical fraternity!) Prior to the appointment I had submitted a series of questionnaires including; a CCI quest...

As most of you here know, I've been struggling with gastroparesis for the last 7 years. It's a very long story but this led to the diagnosis of Ehlers-Danlos syndrome. For those new to my blog... Eds is a genetic condition which makes the collagen in my body weaker and stretch more than it should. I was told as soon as I got the diagnosis, that Eds was the probable cause of my gastroparesis. No one explained why, mainly because the link is not fully understood, even in today's world where we can grow tissue in labs and print 3D parts from a computer! I've spent so many of those years in between, trying to find that elusive link and believe me when I say...I've read about every weird and wonderful theory known to man, every useless trial, and every obscure symptom. I've spoken to others with the same issues and heard their stories of how it all began. From testing new drugs, surgery and some rather suspicious looking electrical devices, believe me when I say...