2 weeks post life saving surgery! 4

So now we are 2 weeks post op & I’m discharged from hospital and settled in our apartment, I wanted to do an update on my fantastic progress!

I’m doing soooooo good! Dr Gilete and Dr Oliver literally saved my life ….& they’re not stopping there, they’re going on to give me the best quality of life I could hope for by operating on the 21st to fuse loads of my spine and untether my spinal cord.

I now have NO seizures, my headaches are minimal, no tremor, numb hands or tingling in my face! I’m off all the extra pain medication from surgery and just on my pre op pain meds now!

I can now sit up (!), laugh, cry, cough, sneeze, hiccup & hug people, without a neck brace and without having seizures and agonising pain! … & of course finally wash my neck!! ?

That is pretty spectacular if you ask me (& far more than I’d even thought possible)!

Now it’s just a case of trying to get my POTS under control and this crazy body used to being more upright again- (which they’re working hard to help me with here too) & have the next surgery on the 21st, to sort my spine and spinal cord out & I’ll be raring and ready to come home & to live my life again!

Dr Gilete is my hero & I will NEVER forget the incredible things he and his team have done for me!

He took on what everyone said to be a hopeless case, believed in me and all of my symptoms and tried his best, and his best was more than I could ever have hoped for!

We still need to raise more funds to pay for the next surgery on the 21st so if anyone has any fundraising ideas or is able to donate I’d be very grateful!

#MelaniesMissionToLive ?

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About Melanie

PLEASE DONATE NOW to #MelaniesMissionToLive - a charitable trust fund created to fund specialised medical transport and world specialist, life-saving spinal and brain surgery for Mel (a 32yr old Newcastle University biology graduate from Cramlington, Northumberland) before its too late!! Due to Mel's complex underlying conditions (EDS and CCI) her only option for revision surgery to fix her broken fusion is to seek help abroad! WE NEED YOUR HELP

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4 thoughts on “2 weeks post life saving surgery!

  • Jennie

    Hi Melanie. I have EDS and POTS with severe neck and head pain. I have had two bouts of random face swelling and regular migraine with numbness and weakness. My head ‘rattles’ on my neck and feels heavy. My legs go from under me and I judder and slur. These symptoms, plus more, keep worsening. I asked my GP and he basically said I was crazy for believing they’re all linked. Then another sufferer told me about CCI. My neurologist is willing to look into it. But as we are in the UK he has no clue where I can be tested etc. Do you have any suggestions please? The time I’m managing upright is reminiscing by the month and it’s getting really worrying. Thanks.

    • Melanie Post author

      Sorry to hear you’re suffering too, it’s horrible!

      You need to push for an upright flexion extension and rotation MRI at Mederserna in London- they even call it the EDS package!

      That will give you a definitive answer into if it is CCI and/or AAI causing your symptoms…. and from there you can send the actual scan images remotely to Dr Gilete in Barcelona or to one of the USA specialists for them to review and give their opinion on if surgery is likely an option.

      Dr Gilete does Skype consultations as well as face to face consultations.

      I hope this helps!
      Feel free to follow me on Facebook and send me a message, there are also a few groups on Facebook with fellow sufferers – including one for those in the Uk and Europe, (Cranio Cervical Instability Uk and Europe) & “beyond the measurement” (worldwide group) which are very helpful to join.

      Best of luck!
      Mel x

  • dawn

    Hi Melanie,

    I am so pleased to see you doing well after surgery and am also trying to raise money to go to Barcelona for fusion surgery.

    Please can I ask were your abnormalities picked up on the Medserena report or just by Dr Gilete?

    Thanks x

    • Melanie Post author


      Sorry to hear you’re facing this battle too!
      Unfortunately as my case was so severe I couldn’t have scans as Mederserna as I couldn’t sit up without immediately having uncontrollable seizures…. so that was never an option for me.

      I had to fundraise and go to Barcelona via air ambulance with ITU dr and nurse on board, and have scans with Dr Gilete, anaesthetics and the full team present before I was rushed into theatre for a halo to be fitted.

      Good luck with your surgery!
      All the best,