In April I made the journey to London to have the all important upright MRI scan of my upper spine. I’d been struggling with symptoms for years including sight loss, memory issues, cognitive problems, poor balance, frequent falls and deterioration in my mobility. I knew deep down something wasn’t right yet it took the kindness of strangers and new (and now lifelong) friends to help raise the £1200 to pay for the crucial tests I was denied on the NHS.
The journey was fairly pain-free with a bit of discomfort, and a good nap. My sister-in-law very kindly offered to drive Mrs Wifey and I to London to save us having to stay overnight and the three of us enjoyed a good gossip on the way down. I was very aware that the tests would be uncomfortable and the results could change my life forever.
We reached London just after lunch time and I headed straight for the Medserena Clinic. Mrs Wifey and I were greeted with posh juice and a tea caddy full of Twinnings Tea. I was taken into the scanner room and sat inside the remarkable machine. I’ll admit that sitting in the various positions needed for the test was incredibly uncomfortable and extremely painful at times. I was reduced to tears and felt like my head was being pierced by the top of my spine. With my head held in place by plastic bolts, this was the first time my spine was alined correctly in years. I could tell how out of place my alinement was given the amount of pain I was in and this gave me a clue as to what the results would show.
I was given two cds with the scan images on and immediately I got in touch with Dr Gilete, a neurosurgeon from Barcelona who is treating EDS patients with Cranio-Cervical Instability. Within hours I had a reply and we began the process of getting my scan results to him for review. Dr Gilete sent me questionnaires to complete which would tell him how disabled my spinal condition had left me, how bad my pain was and the level of brain injury I had received due to any spinal instability. Within days Dr Gilete had the answers I had been searching for since 2014 but I was not ready for the results.
I was expecting instability at the very top of my spine (C0-C2 vertebrae). I imagined that IF surgery was needed, it would be to fuse this part of my spine only. However, things were much worse than I anticipated. Dr Gilete gave me a detailed report explaining that the very top of my spine, where my head joins it, was actually DISLOCATING whenever I turned my head! This in itself is deadly and can result in what is called “internal decapitation”.
The scans also showed that the spine at the bottom of my neck was also in trouble and the instability was compressing my spinal chord. My answers to his questionnaires showed I had significant issues and my condition was classed as “ADVANCED”
According to Dr Gilete surgery is a must, not an option. Not only does the very top of my spine need fusing, as I expected, but the bottom of my cervical spine too. Now, there is an option to fuse the top, leave the middle and then fuse the bottom, but this would put a huge load of work on the middle unfused section and I would inevitably need to have more surgery to fuse that. So the only option is to fuse my entire neck.
This will leave me with 100% loss of movement in my neck. I won’t be able to look left or right, up or down. It will be like wearing a hard collar permanently. I was devastated. But I had even more bad news to come.
I arranged a phonecall with Dr Gilete to discuss his report. He was confident that I will see improvement in my memory and cognitive issues but it he is uncertain if my sight will improve. It is also unlikely I will see any improvement in some of my digestive issues that are likely caused by the spinal instability.
The cost of surgery is around 70k euros. The idea of fundraising that much money is overwhelming right now but without surgery I will go on to to suffer from seizures, paralysis and eventually death. The surgery is not available on the NHS, believe me, many of my friends have fought that battle and lost. My only option is Dr Gilete and his remarkable team. In the meantime I must wear my rigid collar whenever I am travelling in the car, in my powerchair and in my manual chair when my head is particularly painful. I also need to wear it in the house when my upper spine is stuggling and my symptoms are are bad. Whenever I wear my collar now it is a stark indicator of the amount of disability I will gain from the surgery as I will not be able to move my neck at all, just like when I’m wearing my collar. I also have to be very careful turning my head and refrain from any activity that requires me to look up or down, left or right for prolonged periods. This means I’m now unable to do my own hickman line dressing changes, and am even more reliant on Lisa to do simple tasks for me.
As Mrs Wifey and I face the notion that my memory problems will continue to get worse until surgery, we are adapting life to make things easier. I struggle to tell the time, know what day it is and need constant reminders of what I am doing. As I struggle to find the right words to talk and I find myself forgetting important memories like special days and gifts I’ve been given, we cling to the hope that I will recover all of that with surgery.
So our next step is to start fundraising. Dr Gilete has not given me a timeframe to work on, instead he said if I had the money now I would need to be over there getting the surgery, so time is of the essence. I don’t know how long I have left before I lose my memories altogether or how long it will be before I start suffering from seizures and having to remain laid down 24/7.
We are hopeful that we will raise the money quickly and get to Spain so I can have the life-saving surgery I so desperately need.
If you would like to donate you can do so at www.youcaring.com/carriesfund
If you would like to hold a fundraising event then please get in touch if you need any help or support.