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

Cushing’s resources

I wanted to get a little list together of some of the good resources I've found on my Cushing's journey so others can easily find the info (and so can I instead of trawling through dozens of bookmarks) Videos: Update on the Management of Cushing's Disease - from August 2019, a presentation from a medical … Continue reading Cushing’s resources

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

Treatment is getting closer

Once again time has slipped by and it's been 2 months since I posted an update! There hasn't been a huge amount to update though really until now. I've been on the metyrapone for nearly 9 weeks now and it has definitely made a difference, both good and bad. The thing with high cortisol is … Continue reading Treatment is getting closer

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