Arachnoid cyst number 3 :(

So, SCI awareness day has passed and September is SCI awareness month. We are day 16 at St George’s hospital with #emersongrant2014and had a positive meeting with a spinal surgeon consultant from Great Ormond Street hospital. When I say positive I mean we were able to ask questions and understand the answers and feel a sense of trust that the person in front of us had great expertise in the spinal cord complications. He showed compassion, he was professional and most of all he gave us a plan on what to do. I even managed to sleep for a good 3 hours last night…

 

We didn’t quite hear the news we had hoped for but it confirmed our fears in a more positive, moving forward way.

#spinalcordinjuries are complicated at the best of time, then throw in an anachroid cyst that just won’t and can’t go away. Each time it comes back it causes more mobility loss and will eventually cause issues to the brain, as the CSF fluids that flow between your spine and brain to enable you to be mobile become damaged.

Each time there is a need for surgery the risks become higher. Each time Emerson has had surgery his spine has taken a hit and caused Sciliosis, kyphosis, low bone density and osteoporosis. How can all this be possible we knew there were risks but we certainly didn’t think Emerson would get all this is just 12 months!

If it was a benign tumour it could be removed and treatment could be given. Unfortunately this is not an option for Emerson. It’s more complicated it’s a very rare critical disease and there is no treatment to treat it to make it go away.

Today, I’m allowed to be a parent and feel angry that if our requests for an MRI back in June/July 2016, Emerson wouldn’t have these issues.

Today, Emerson had a Somatosensory evoked potentials test to check his nerves between legs, arms, spine and brain – this will be the baseline for any changes that occur from today. He also had a Magnetic stimulation test to measure signals from brain to spine.

There is nothing more to do now but wait and be ready for when the cyst that is in Emerson’s spine compresses against his nerve and causes critical neurological damage.

All we can do is be positive, and keep on going, continue to go on adventures and enjoy the simple things in life that we are blessed to experience; Hold on to the fact that Emerson is eating, drinking, speaking, being cheeky, laughing and most of all breathing.

When the time comes and it’s critical – we need surgery we know that it will need to be more aggressive, more attentive, more precise, we know this is more than likely going to cause more damage to his mobility, his brain function – we are positive we have somewhere and someone who is able to carry out the procedure professionally in the UK and we haven’t ruled out our options for surgery in America. We are just waiting on the quotes which more than likely we couldn’t afford anyway but we will hold onto every single price of hope possible.

His deterioration could happen in a few days, a few months but it will happen because the cyst is there growing – until that time we need to make a plan and first decide is this the best and only option and then after surgery where will Emerson have his rehabilitation, where is the place that will work his body to get it moving again. Sadly we fear it’s not here in the UK. So, again we are making a plan and getting quotes and a breakdown of costs to see how much our son’s life is worth, how much we can raise to perhaps give him a future he truly deserves.

This is no doubt the biggest part of our journey so far and we continue to feel blessed with all the love and support from everyone and can’t thank you all enough for your fundraising and donations.

If you would like to hold a fundraising event, however little or big please let us know

Thank you everyone ❤️

#sci #cure #spinalcordinjury #spinalcordawareness #raredisease#arachnoidcysts #cystonspine #nevergiveup #believe #youcandoanything #hope#cystsmattertoo #rarediseaseday 

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