Post Cushing’s Surgery – 1 year on

It's been one whole year since my pituitary tumour that was causing Cushing's was removed by the amazing (and famous!) Mr Ahmed and as such I'm now in remission. We're never considered cured as there is around a 30% recurrence rate and it's not an easy recovery, nor are we guaranteed to recover 100%. However … Continue reading Post Cushing’s Surgery – 1 year on

Post Cushing’s surgery – weeks 4 – 8

I'm approaching my 7 month anniversary so figured I'd better get on with writing this blog up! Sorry guys! Week 4 was the week Mum went home. I still hurt everywhere, was sleeping lots and didn't really have an appetite but it was all the same each day and as my parents live in a … Continue reading Post Cushing’s surgery – weeks 4 – 8

IPSS results and next steps

The results are in! 5 weeks after I had my IPSS (to check out what that is look up the leaflet here or have a read of my personal experience of it). Finally it feels like I'm making some progress with Cushing's. I went for my follow up appointment yesterday, 5 weeks after my IPSS … Continue reading IPSS results and next steps

IPSS – a patient’s experience

Inferior Petrosal Sinus Sampling or IPSS is sometimes used to pinpoint where the source of Cushing's is coming from, generally when it's highly suspected to be a tumour on the pituitary gland. I was 'lucky' enough to have one of these a couple of days ago as my MRI for my pituitary came back clean … Continue reading IPSS – a patient’s experience

Rare disease day

28 February is Rare Disease Day so it's probably a good day for another update on my Cushing's. It's important to highlight rare diseases; yes they affect less people than the big, famous diseases such as cancer but they can be just as debilitating and life threatening, possibly more so because they don't get the … Continue reading Rare disease day

New year, new hospital

Once again it's been a while but there hasn't been very much to report so that's my excuse. I've had a couple of appointments this week so here's what the latest situation is. I had my MRI on Christmas Eve. Not the most interesting way to spend the day perhaps but it's another step forward … Continue reading New year, new hospital