EVL - Prof. A. Forbes: Chronic intestinal failure

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Gastroparesis, EDS & the Final Piece of the Jigsaw Part #3 / Cranio-cervical Instability!

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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...
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Gastroparesis the Truth

What is it really like to live with a  debilitating condition that may never go away? In the beginning, its all about survival, just trying to get through the endless testing, trying to find the answer to your problems. It is such a difficult time that you barely notice the months slipping by that you will never get back. You spend most of your time trying to find a treatment that will help, looking for that illusive piece of the jigsaw that has been missing your entire life. You don't stop to think, what if? It doesn't even register on the radar…there must be something, someone else might know more, maybe I can work it out myself?  So you loose yourself in finding the answer, switch off from what's happening and focus on the one shred of hope that you have. All the time, tick tock, tick tock, the months go by. Finally you find someone who cares, a special dr or nurse who takes the time to listen and it changes everything….for a while. It gives you comfort, new...
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Gastroparesis, EDS, & the final piece of the jigsaw #Part 2

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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...
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