Before I go into my long history of just how chronically ill EDS has made me, I want to write this at the beginning because I feel that time is so seriously against me. The recent chain of events that have happened have left me feeling like I am in a living nightmare. For those who are not able to read all my story, please read this part.
Only a few weeks ago I suffered a mild heart attack, the fact it was mild doesn’t really comfort me, as I’m a mother who wants nothing more to be out of bed loving life and sharing it with my precious daughter! It’s any mothers worst nightmare to be told they have a life threatening illness and that complications from that illness can lead to a seriously shortened life without surgery.
Some nights as you can see in the pictures I suffer from extreme facial and tongue swelling. It can be so bad that I struggle to breath, my racing heart rate (pots) doesn’t care about that and my brainstem is being crushed by my spine and brain! The possible reaction I’m having is to do with the irritation and inflammation in my body and is called a Mast cell reaction. Simply put it’s another common disorder of EDS, the body releases too much histamine similar to when you’re bitten by an insect and the bite naturally swells and becomes irritated. This and the excess trapped spinal fluid from my unstable spine and Chiari Malformation is blocking the natural flow, like a cork in a bottle!
It’s so frightening and dangerous when this happens and my heart can not take the strain. I fear everyday that I won’t be here to fight for this surgery or to be recovered and well again to see my daughter grow up! It is terribly upsetting that I can’t get the surgery in the UK but there are no EDS surgeons that exist here currently! My only option is Dr Gilete in Barcelona and I really need your help please, whether it be from generous kind donations or help with fundraising activities. Please help me beat my EDS and live to have a full life with my daughter, friends and other family. Thank you……please continue reading for more of my story.
As a child I was always good at sports, very accident prone and basically had my own hospital bed for various injuries but a fairly normal child! I fell off a wall when I was 11 and landed on the bottom of my spine and suffered with pain in back from that point. I swam every day and continued other sports which I think held my body together well. At 16 I fell in love with horses and even studied them at College. When I was 19 I had a riding accident and landed again on the bottom of my spine. I saw a local orthopaedic surgeon who told me I had the spine of an 80-year-old and to get a desk job and forget my dream. Thankfully mum didn’t leave it there and she found me a wonderful surgeon in Nottingham who straight away said I had extensive lower disc issues. He said there was a new procedure he could try but the surgery meant being awake! EEK. I was in so much pain by then I said yes to Intra-Discal ElectroTherapy IDET. So a thin wire was inserted in and place around the disc and heated up to burn so it shrunk back into place. The pain was one of the worst experiences I have been through!
After that was done I did indeed get an office job because I couldn’t go back to professional riding or yard work. Unfortunateley the office job came with migraines and back pain for the next 7 years. In that time, I had my own horses and my body was as strong as it could be but things were still hard at times, without understanding why. I saw a Chiropractor regularly for spinal subluxations and she kept me mobile. She used the Mctimony method nothing bone cracking or savage. I had my daughter in 2004 with a very long and complicated labour that resulted in a large loss of blood and tissue damage. In 2009 I went back to working with horses and was head instructor for a large riding school and after that I managed a large livery yard. I was super active and in the best health possible at that time. Then in 2011 I was involved in a 4 car accident, I hurt my back and hit my head really hard. I went back to work and carried on as best I could, until one day my legs just gave way. New scans were done and I needed lower spine surgery to replace a disc. Within days of surgery awful headaches started, worse upright and better lying down. It was suspected I had a spinal fluid leak so I had total bed rest for a week and was sent home again. As I battled to get some fitness back the headaches got worse and new symptoms kept appearing.
I had full spine MRI’s and low lying brain tonsils were seen on my scan reports. I saw three Neurosurgeons over a few years who all said they couldn’t pin point the issue. Then in 2015 I went to Medserena in London for an Upright MRI, hypermobility of the spine was identified consistent with Ehlers Danlos Syndrome. I then had neck rotation scans done with and that identified more instability, this time where your head joins your neck. I researched instability of the neck and head and found these terms; Cranio cervical instability and Atlanto axial instability. While researching both of these things I also came across Nina Parsons story and I tracked her down! Nina had recently had surgery with Dr Gilete in Barcelona for more surgery the UK could not offer.
I sent my details to Dr Gilete and he was able to finally confirm all my issues. 1.3cm of my hindbrain is in my spinal canal blocking the flow of spinal fluid. My neck is unstable and crushing my brainstem, this causes irreversible damage when left untreated. In my lower spine there is arthritis and squashed nerves by the facet joints. I am also being tested for another condition where the bottom of the spinal cord becomes attached to tissue and pulls the whole spinal cord tight. If left untreated this can cause permanent nerve damage and even paralysis.
So now I need decompression surgery to make more space for my brain and fluid to move. I also need fusion all down my neck from the skull to stop the excess movement that is causing damage to my brainstem. I need lower spine fusion and other lower spine procedures. The cost of surgery is over £180,000 and surgery is not provided in the UK. Recently the newest symptoms I have is that my hair is falling out and I am losing feeling in the left side of my face. I get facial swelling in my face within 10 minutes of being upright. Neck pain and head pain with pressure are constant along with ringing in the ears. There are many more symptoms but I don’t want to bore you all! Dr Gilete is giving me the opportunity to live my life and enjoy time with my daughter, without these surgeries I am living on borrowed time. Look out for new videos of my journey and I hope you find the information useful.
Ehlers Danlos Syndrome (EDS) took away my dreams of becoming an Olympic Dressage rider back in 2000 and I’ve had to adjust my life ever since. I’ve had some good years and I’ve had some terrible years but fighting is the only way any of us are going to get treatment for Cranio Cervical Instability (CCI).
PLEASE HELP SAVE LEAH BY DONATING OR BEING INVOLVED IN OUR CAMPAIGN TO GET LEAH TO HER SURGEON ASAP, THANK YOU……….PLEASE EMAIL FOR ANY MORE INFO