Newly diagnosed Cushings

Newly diagnosed Cushings

Postby member_37070 » Thu Jul 21, 2011 9:09 am

Like so many others, after a lot of tests, scans, petrosal sampling etc etc etc I have finally been diagnosed with Cushings Disease caused by pituitary tumour. What a relief to finally have a diagnosis. I have now been put on a witing list for surgery - probably in 6-8 weeks time. What I want to really know is how will I feel after surgery? From what Ive read you feel worse initially before feeling better? I have a 5 year old and 3 year old - so I really need to be back up and running pretty quickly! Plus I need to get myself motivated to shift some of this weight!
Any advice??
Hope to hear from somebody out there soon!
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Joined: Wed Jul 20, 2011 12:46 pm

Re: Newly diagnosed Cushings

Postby Anna » Wed Aug 24, 2011 9:22 pm


In general what you've heard is probably correct, although everyone reacts differently and some have to permenantly adjust their pace of life. The reason for feeling worse at first is of course you've had a major operation and it can take a while to get your hormone levels adjusted.

I wouldn't like to put a timescale on it. I had my operation a long time ago with the complication that I had cushings with craniopharyngioma. I was 16 at the time and I did manage to take my o-levels (with extra time given to complete the exam papers) 3 months later and passed some of them!

I hope you read this before your op, as I'm guessing it must be soon now.
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Location: Devon

Re: Newly diagnosed Cushings

Postby Danny » Thu Aug 25, 2011 9:16 am

Hi member_37070 (have you got a name :)

All I can say is everyone is different with recovery time scales but don’t expect miracles like I did, I came out of surgery thinking that was it and everything was ok and I could get on with my life with no meds and just a few check ups (very naive I know), the best thing you can do is listen to your body and do what it tells you and take it easy when you need to and for god sake don’t push yourself because you will only knock back the recovery time. My boys where aged 8, 5 and 2 at the time of my surgery and I pushed my self far too much because of my partner working nights on weekends and I was looking after the kids, I also returned to work 2 weeks after surgery (light duties) which was a very stupid thing to do.

Once you have had surgery start pestering your endo for appointments and keep on at them, you have to push, push, push to get results to get back on your feet, with young kids you have no choice.

Plan ahead, get yourself some support to help with the kids, take one day at a time and don’t do what I did!

Most of all, stay positive don’t slip down that slippery path of self pity because once it’s got you you’re doomed.

Haven’t got Cushings myself and know very little about it but I had transphenoidal surgery in Sept 08.

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