Post Cushing’s surgery – weeks 2 – 4

I was going to stay splitting the recovery up into weeks but to be honest things take so long to change there's not much point! Week 2 was the first week out of hospital really and it was quite a scary thought for me. I was convinced I would go into adrenal crisis at any … Continue reading Post Cushing’s surgery – weeks 2 – 4

Post Cushing’s surgery – Week 1

Recovery from surgery is meant to be ok, recovery from Cushing's... not so much. So I'll continue to document my journey as I can and hopefully it will help give hope to others suffering and help me on low days to look back and realise how much better things have become. The first week for … Continue reading Post Cushing’s surgery – Week 1

Cushing’s Surgery

I didn't expect to take this long to update on my surgery but recovery is no joke. So here we are, 9.5 weeks on. I'll update in a series of posts including the day of the surgery and installments on the aftermath. I ended up being a bit rushed into the surgery so my pre-op … Continue reading Cushing’s Surgery

Surgery date

Well so much for August surgery! Unfortunately my surgeon got an influx of much higher priority patients and all surgeries got pushed back. Luckily however he's putting on extra slots so I am going in this Sunday, 22nd September, to finally have the little beast evicted! I go in on Thursday for my pre-op assessments … Continue reading Surgery date

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