Posted on May 23, 2017
My last update since Barcelona received lots of views so I’m going to assume many of you have watched it and are aware of the recent turn of events. In short, I have now been diagnosed with Atlanto Axial Instability (AAI) in addition to the CCI. Shockingly, I am at risk of internal decapitation each time I move my head. The psychological effect of this knowledge is all encompassing.
My brain stem disability index is at 95%. This means that my clinical status with regards to cervico medullary syndrome is advanced; hereby the need for surgery ASAP is stressed and I have been given a 1-2 month timescale (as of todays date we have 6 weeks maximum after which I refuse to consider).
The Barcelona surgeon claims ‘ … there is no chance of improvement without surgery and her condition will continue to decline as time goes on’
(my rate of decline is rapid bearing in mind that only 8 weeks ago I was averaging 80% on the brain stem index; I hate to think what the next 6weeks will bring for me to endure).
Additionally, there are significant signs that I have Tethered cord syndrome, I am seeking a hospital to do the testing for ‘occult tight filum terminale’. The 5 tests I have been told are needed prior to surgery, and to plan for future surgeries equate to an average of £5,000 plus lots of travelling to specialist services across the UK (which feels unbearable now). I’m currently trying to find services providing these tests.
In conclusion, alongside the travelling and pre-op testing, our main goal (the lifesaver) is to have a large occipito-cervical fusion and decompression; This involves placing my skull in its correct position, decompressing my brain stem & spinal cord, drilling hardware into both sides of each vertebrae and correcting their position and dislocations.
My surgeon will harvest my lower back ribs and use them to fuse my skull and cervical spine into place. The fusion will range from CO to T1 where it is hoped that my thoracic spine is reinforced enough by my rib cage to withhold the weight and pressures placed upon it. This surgery will result in a 100% loss of mobility of my head and upper spine. At present am very scared and grieving for the loss of mobility and restrictive life ahead of me.
After this first surgery, I will be placed in a medical coma for a number of days. Once I have woken (assuming all has gone well) I may or may not need to have a halo brace drilled into my skull to stabilise my head. A few days later, I will require a second operation, during which, my surgeon will operate on my spine via the front of my neck and remove damage discs, replacing with metal caging to further strengthen the area. For this stage of the fundraise we are require £100,000.
Unfortunately, tests suggest I also have the instability further down into my lumbar region. This will need fixing later in the same manor, once I have recovered (hence, the additional £50,000 fundraise). This surgery will remove 100% of my spinal movement in addition the loss of head and neck movement. The prospect of this leaves me fearing for the future I know I should be grateful to have.
I know the fundraising page still states that I am hoping for surgery in the US; I haven’t dared to edit this yet as I am still in the decision making process over which surgeon will complete my operations.
Please recognise, that whilst I can’t deny the absolute necessity for these operations in order to guarantee my life; I am still digesting the information and its so very hard. I am still trying to comprehend how my imagined life will unfold. I am still struggling to comprehend the disabilities I will have post surgery.
I know that the US surgeon has a depth of understanding of EDS patients and my related issues which is incomparable to other surgeons. I know that the long-haul flight will weaken me and cause extreme pain and compressions. I know that the US option is far more expensive than the Barcelona option.
I see that we are far closer to reaching the overall costs of Barcelona and that the waiting times are less than the US. I also know that the Barcelona surgeon has a great track record of such surgery….
But, I am struggling to make such a life changing, life saving, complicated decision over who to choose as my surgeon and I ask that you please continue to be understanding for the next 72 hours whilst I decide my best route ( I have until Friday to book Barcelona).
On a separate note, the amazing success of my fundraising is such a source of hope! We have done incredibly well achieving the grand total so far. Thankyou, thankyou, thankyou.