Bad news


Just over 2yrs I’m from my fusion surgery, I was planning on posting a positive update telling you all how fantastically well I’ve been doing… how much I’m able to live my life, nights out weekly, concerts, volunteering & gaining experience in a Primary school in preparation for doing my teaching qualification, doing 2hrs physio/day with 2kg weights and resistance bands, being able to sit up unbraced and unsupported…..BUT, unfortunately something terrible has happened.

My skull has become unstable again!

I started feeling a clunking in my skull, and having cluster headaches (Hence the return of Oxygen)… This coincided with the return of many neurological symptoms I had Pre-fusion- eg, more PoTS episodes, tachycardia, dizziness, going faint, vomiting, irregular heartbeats, tingling in my fingers & face, forgetting conversations I’ve had, tremors… the list goes on.

I now can not sit up AT ALL without my rigid neck brace on or I get excruciating head and neck pain, dizziness and vomiting, and I’m also having to wear it in bed to limit the instability… so I’m back in a brace 24/7 and my symptoms are increasing daily!

I now desperately need YOUR HELP AGAIN, to get to Spain ASAP for testing and surgery to fix this problem…. so I can get back to recovery before I loose all the fantastic progress I’ve made!

I will update with a fundraising target as soon as I’ve worked out costs, but for now, the GoFundMe is active again and able to take donations, as is my website (no fees taken from my website).

And we are in the process of organising a date but need to get there ASAP.

Please help by supporting my cause, donations can be made via:

GoFundMe: gofundme.com/Melanie-s-Mission

Or My website (no fees deducted): http://www.melanies-mission-eds.org.uk/donate-now/

Any support with fundraisers and spreading the word would also be amazing and much appreciated!

I can’t believe we are doing this again, from a devastated but determined Mel… let’s do this! #MelaniesMissionToLive💜 x17BF78B0-E4A8-4F70-BE40-E1CF7D3115F3


About Melanie

PLEASE DONATE NOW to #MelaniesMissionToLive - a cause created to fund specialised medical transport and world specialist, potentially life-saving spinal and brain surgery for Mel (a 29yr old Newcastle University biology graduate from Cramlington, Northumberland) before its too late!! Due to Mel's complex underlying conditions (EDS and CCI) the surgery is only available in the USA and costs over £150,000!! WE NEED YOUR HELP

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