• Chance4Charlie

3 weeks post surgery update

Saw Dr Gilete my main neurosurgeon yesterday. It was quite emotional, we went through my symptoms and issues before and my issues and symptoms now. Although I still have EDS and am still in recovery most of my big issues have either massively reduced or seem to be in remission. I wrote a letter expressly how grateful I was to Dr G which he read in front of me and as he read it he became quite emotional and said, "this is why we do this, this is what this is all about". I have honestly never met a group of consultants who care so much about their patients. He even said he thought I should do a Ted talk on my experiences when I am up to it. 😊

Recovery is going exactly to plan, I have been given exercises to do and I am seeing a geneticist in the next few weeks. The wound is healing really well and they are happy with my posture and the position of my neck, something they worked on for an hour during surgery.

All my scans are showing that everything is in the right place and that my jugular veins are now working as they should be so my blood is pumping into and out of my head correctly.

I was the first person to have a jugular vein decompression at the same time as the fusion, it was a big risk and a big leap of faith on our part but I fully trusted the surgeons and it had paid off immensely for myself, the surgeons and future patients, as my symptom relief has been remarkable and Dr Gilete believes doing these surgeries together could benefit a lot of people in the way it is benefitting me.

My family and I are so grateful to everyone who has fundraised to get us here, get the surgery and is still helping to keep me out here for recovery and possibly other treatments. I feel incredibly privileged to have accessed this team of doctors and this surgery. I feel incredibly privileged to now be recovering close by without the fear I will have to go into a hospital that does not understand my condition or even really believe in its existence.

There is a kind of trauma that many EDS patients experience in continually being told 'it's all in our heads' and being denied access to treatment that can stop many of us from going into hospital even when a medical crisis hits. I feel very lucky to not have to deal with that added level of stress whilst I recover from such a huge surgery and I am so grateful to everyone who has been so generous with their time, donations and their kind thoughts and words.

Thank you so much, I will keep you updated on our progress, all my love Charlie. X


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