mind, body & EDS

| living with a rare, invisible, genetic disease |


April 2018

Homeward bound: Laura discharged from #6 Neurosurgery!

“Be proud of all your scars. They are badges of honour you’ve earned from the challenges that life has thrown at you. Your scars are a sign of strength and resilience. A sign that you chose to keep surviving” • Laura Lee •

It’s discharge day! Wow, what a relief after the last three days of major post-op struggles and suffering from typical EDS crashes including severe dystonias, dysautonomia and adrenal insufficiency attacks, and pain like no other – exhausted doesn’t even begin to describe how my body is feeling. You’d think this being my 6th neurosurgery it would become easier, but each time it gets more difficult as my body becomes more fragile. This is just the beginning of a long journey of further surgeries that lie ahead of me. But, here’s to being the first EDS patient in the U.K. to undergo these series of pioneering brain and neurosurgeries – I’m hopeful that this new path of treatment will help restore the necessary bloodflow to my brain and neck and give me another chance at life. I choose to keep trying because there’s so much more life I have yet to live. Thank you for all your incredible love and support from across the world, each one of you gives me the spark of hope I need to keep going.

#zebrastrong #nevergiveup #hope #brainsurgery

UPDATE: Laura’s in recovery from her 6th brain surgery!

From Rochelle (Laura’s twin sister):

She’s only gone and done it again! Laura has pulled through her 6th neurosurgery but her first in the UK! Selfishly, it’s amazing that she’s so close to home and fortunately the standard of care has been amazing thus far in consideration of her EDS (apart from the NHS bed shortage scare this morning which meant her surgery almost didn’t happen today 🤦🏼‍♀️). Most importantly, the surgery all went to plan and she is expected to be discharged tomorrow ☀️ She’s been in good spirits both pre- and post-op👇🏻

Preparing for 6th Brain Surgery on 18th April

“Bravery is the audacity to be unhindered by failures, and to walk with freedom, strength, and hope, in the face of the unknown.” 🦋

This last month has been a complete blur. Only now am I beginning to realise the extent of the reality that faces me since being told I’ll be undergoing my 6th brain surgery in just over a week in Cambridge (U.K.), on the 18th April.

This will be the beginning of many more pioneering brain surgeries that await for me in the years to come, to attempt to fix the severe blood flow problems in my brain and neck.

The planned surgery is to remove delicate spinal bones that are compressing major veins and arteries at the base of my skull and top of my spine; specifically, my left styloid and left C1 transverse process. I’ve been advised and told that my initial recovery from this surgery will be at least 6 weeks.

Thinking that things couldn’t get any worse, I received a call from my US neurosurgeon a few weeks ago informing me that I have more serious instability problems in my spine that is compromising my spinal cord and explains the worsening of my symptoms.

I’ve been reluctant to say anything about this because, in all honesty, I think I’ve been in a state of shock and denial – I truly didn’t want to believe that what I was being told was real.

I’ve been continuing my day to day life, finishing off my thesis whilst working as a geoscientist, balancing osteopathy, pain management and other specialist appointments, whilst socialising and going out with family and friends, and keeping up with my gym and physio routine – trying to distract myself, to try and feel as “normal” as possible.

All my closest family and friends know how dedicated I am towards my rehabilitation physically and mentally, and being told that there are new problems compromising my life is beyond heartbreaking. To accept this is even more incomprehensible and I really don’t want to believe it.

I admit that I am scared of what lies ahead of me…the thought of what if I never feel better…and what if I have to live feeling this way forever?

This isn’t living, it’s surviving – but reflection is what has saved me.

To be reminded of how much I’ve already gone through, that my positive mindset and persistence has given me the opportunity to relearn how to walk/talk/read/write in just under a year, gives me the hope that I have the strength somewhere within me to get through this next obstacle that faces me.

That the impossible is actually possible if you just believe ✨

• Laura Lee •

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