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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 to be taken…

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 questionnaire, 

Gastroparesis, EDS, & the final piece of the jigsaw #Part 1.

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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 I&…

The Sick Role

I know I've rather slowed down with the writing. I always have plenty to say but sometimes I need to keep things to myself a bit. However I do realise that not writing means that you guys miss out on all my wonderfully happy stories! So I thought I would top you up with the joys of my life and all the little challenges it brings. Today I'm merely ranting out loud but I promise to post a more personal blog soon....

I've been thinking a lot lately about other peoples perception of what my life entails. Obviously not those who actually take the time to find out, those who send me messages because they've not heard from me in a while...you guys are fine! No, I'm talking about those who choose to judge from a thousand paces purely on the fact that you have put a little make-up on!

Just want to get this out there... YOU GUYS SUCK! Big time!

What is it with this obsession that sick people must be:

a) miserable   (sick people obviously NEVER smile)
b) pale   (anything war…

*RANT*

RANT ALERT!

Fuming doesn't even come close to how I feel right now. Life has been SO hard lately and getting all this down on "paper" in a coherent way might be a bit of a challenge but here goes!

Rewind back to November (2014) my jej tube started to misbehave. It started with a niggle and what we thought was granulation tissue around the stoma. So I told my GI and went to the gp for some silver nitrate to burn off any troublesome tissue (nice huh). The granulation disappeared but the pain was getting worse and now it was weeping all the time too (infection was ruled out straight away).

So, step two was to ring my team and get someone with experience to look at the tube and find out what was going on. December, I get an "urgent" appointment to see the surgeon who initially placed the tube for me, by which time I was having to take the dreaded oramorph to be able to get to the appointments!

My mum and I attended the appointment together like we always do to mak…

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 hope, and …

Be Somebody?

It's been so long since I wrote here yet it amazes me how many people still read my ramblings. When I first started writing I did it to find others like me and help along the way wherever I could. I really can't believe how much it has changed my life.

I was never the brightest kid in school, nor the funniest, I hid away in groups and quite honestly people rarely remembered me at all. Probably because I never wanted to be noticed, didn't want to stand out too much. My teachers always said I had potential but I rarely reached it! Not because I was naughty… simply because I didn't have the courage to make myself heard.

The last few years of living with a chronic illness has been a huge learning curve and I've had to do a lot of soul searching.  During that time Ive realised that all my life I felt like an "underachiever" for lack of a better word. Always feeling that I had let others down and in turn let myself down the most. Maybe it stems from my absent …