Gastroparesis, EDS, & the final piece of the jigsaw #Part 1.
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've tried it all! Anyone would get down hearted when you've been through all that and still have no answers and still no cure.
BUT... In finding out those things that didn't work, and didn't go to plan we eliminated so many possibilities and forged new thought processes from the myriad of "unexpected" symptoms. I can say that we are closer than ever before to understanding the actual connection!
Most of you know I've had to dip in and out of private services to get the answers to ALL the big questions and yet again I came to the point where the only way to put that last piece in place was to seek private help outside the uk! I took the plunge several months ago and had some specialist MRI scans done. I got a written report which highlighted that my top two vertebra over rotate and sublux (partially dislocate) when I turn my head to the left and right. Alongside a huge range of movement beyond what is "normal" when bending my head forward and backwards. This leads to continual damage to the nerves that control just about EVERYTHING that we do without thinking!
Due to the complex nature of this condition alongside Eds complications there is no hope of getting help through the NHS at the present time and very little knowledge within the uk as a whole... including accurate diagnosis! So yet again I was left with a dilemma, Knowing what could be causing all my issues but no specialist with enough knowledge to tell me what to do about it. Through talking to others online I joined a group and found all the information I needed. I did some research and sent my MRI images to a leading neuro-spinal surgeon in Barcelona who has worked with EDS patients... a very rare find! He responded to my email promptly requesting that I make an appointment to see him in person because he had seen more in my scans than what I had initially been told.
So, in mid December hubby and I embarked on a journey to see the man himself. A 24hr marathon appointment dash across Europe right before xmas! At the point of booking, I sat there wondering if I was doing the right thing, but I wasn't getting any clear advice here about what I should be doing or indeed NOT doing to help the situation. From what I had read, my scan report seemed fairly minor and I was struggling to understand how they could be so different so I honestly thought that the trip was maybe a little excessive but by this point I just needed to know!
The journey out was pretty tough going, I've only flown once since getting sick so it was a first for hubby and I on our own. Thankfully we have now mastered the skills of travelling with TPN so that wasn't so daunting this time round! We got to experience the joys of the freezing cold airport translift (a box van on stilts for those who can't manage the aircraft stairs!), a first for both of us. Then we proceeded to get stuck on the plane after landing at Barcelona because someone had sent the translift to the other side of the airport, holding up the flight back for everyone waiting! Followed by the most insane taxi ride known to man...queue crazy taxi driver...120mph...while texting!!!!!! I've never been so pleased to reach a destination in all my life!
Freezing cold and ready for a well earned rest I laid down and slept....for roughly 40 minutes before I was awoken by a dream where I had overslept and had missed the appointment...after that, it was a very very long night!
Thankfully the hotel was just up the street from the hospital so we had no trouble finding where we needed to be....you really can't miss the place!
It looked more like a palace than a hospital. We arrived in plenty of time so had a fairly long wait, everyone knows what that's like....ten minutes can feel like an hour in a Drs waiting room! However, finally, in what seemed like an eternity we were called through.
To Be Continued....
Click here for #Part 2
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've tried it all! Anyone would get down hearted when you've been through all that and still have no answers and still no cure.
BUT... In finding out those things that didn't work, and didn't go to plan we eliminated so many possibilities and forged new thought processes from the myriad of "unexpected" symptoms. I can say that we are closer than ever before to understanding the actual connection!
Most of you know I've had to dip in and out of private services to get the answers to ALL the big questions and yet again I came to the point where the only way to put that last piece in place was to seek private help outside the uk! I took the plunge several months ago and had some specialist MRI scans done. I got a written report which highlighted that my top two vertebra over rotate and sublux (partially dislocate) when I turn my head to the left and right. Alongside a huge range of movement beyond what is "normal" when bending my head forward and backwards. This leads to continual damage to the nerves that control just about EVERYTHING that we do without thinking!
Due to the complex nature of this condition alongside Eds complications there is no hope of getting help through the NHS at the present time and very little knowledge within the uk as a whole... including accurate diagnosis! So yet again I was left with a dilemma, Knowing what could be causing all my issues but no specialist with enough knowledge to tell me what to do about it. Through talking to others online I joined a group and found all the information I needed. I did some research and sent my MRI images to a leading neuro-spinal surgeon in Barcelona who has worked with EDS patients... a very rare find! He responded to my email promptly requesting that I make an appointment to see him in person because he had seen more in my scans than what I had initially been told.
So, in mid December hubby and I embarked on a journey to see the man himself. A 24hr marathon appointment dash across Europe right before xmas! At the point of booking, I sat there wondering if I was doing the right thing, but I wasn't getting any clear advice here about what I should be doing or indeed NOT doing to help the situation. From what I had read, my scan report seemed fairly minor and I was struggling to understand how they could be so different so I honestly thought that the trip was maybe a little excessive but by this point I just needed to know!
The journey out was pretty tough going, I've only flown once since getting sick so it was a first for hubby and I on our own. Thankfully we have now mastered the skills of travelling with TPN so that wasn't so daunting this time round! We got to experience the joys of the freezing cold airport translift (a box van on stilts for those who can't manage the aircraft stairs!), a first for both of us. Then we proceeded to get stuck on the plane after landing at Barcelona because someone had sent the translift to the other side of the airport, holding up the flight back for everyone waiting! Followed by the most insane taxi ride known to man...queue crazy taxi driver...120mph...while texting!!!!!! I've never been so pleased to reach a destination in all my life!
 |
| Vilana Hotel |
Freezing cold and ready for a well earned rest I laid down and slept....for roughly 40 minutes before I was awoken by a dream where I had overslept and had missed the appointment...after that, it was a very very long night!
Thankfully the hotel was just up the street from the hospital so we had no trouble finding where we needed to be....you really can't miss the place!
 |
| Hospital Teknon, Barcelona |
It looked more like a palace than a hospital. We arrived in plenty of time so had a fairly long wait, everyone knows what that's like....ten minutes can feel like an hour in a Drs waiting room! However, finally, in what seemed like an eternity we were called through.
To Be Continued....
Click here for #Part 2
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