Posted , 5 users are following.

Evening all, 

Me again... 

So I had a call from the hospital this morning and the IPSS test came back inconclusive again as well as the CRH test that come back! Albeit they did say that they saw from the test that the tumour in my pituitary gland is now "very large" so surgery is def happening and I shall be receiving a letter with my surgery date for the early new year! which I guess is a positive! 

However they said they shall be reviewing my case in a meeting today and next Wednesday to discuss whether they want to investigate any further into the fact they are unsure whether the Cushing disease is def coming from my pituitary gland and not my adrenals too. nonetheless surgery is on the cards...

can anyone give me some advise on what to expect on having the pituitary gland removed and how I shall be feeling / recovering time? I have been postponed in moving onto response in the police as I am unsure how fit I will be and when I can return so any advise is welcome! I'm worried as its "very large" that they won't be able to remove it all at once, does anyone know how its performed? 

Thanks for all the support too guys! 

0 likes, 4 replies

4 Replies

  • Posted

    Hello Ace, Im going to share my recent experience since I am only 5 mo post op. Im a lot older than you (53). Had a large pituitary tumor. Mine was dual, prolactine and ACTH producing. They removed it from my nose. After surgery I experienced severe nausea for 2 months. When that let up I developed severe body aches which I am dealing with as I type. Its one day at a time and everyone is different on how they recover as I am learning. If your put on a steroid after surgery then you will deal with coming off that. This creates its own problems. I get dizzy, nausea and have the body aches. Ive been out of work for almost 6 months and I think Im going to ask for an extension because there is no way I could work right now. I thought I would be back to work within two months.
  • Posted


    That is good, I'm glad about your surgery

    But if they want to check your adrenals for extra tumours, what not, that probably means , they are

    Not sure about your pituitary tumor

    I would say , it is best to have an mri of your pituitary gland first and then maybe your adrenals

    Also pituitary tumors must be taken out by

    Very experienced doctors in pituitary surgery

    Good luck

  • Posted


    I've had 2 pituitary surgeries and find the surgery to be easy enough. It is true that you need to be very positive that the surgeon who is operating on your pituitary tumor, that the surgeon has had many years of experience of pituitary tumor surgeries

    It sounds like they want to be sure to find out if you also have a tumor on your adrenals. I have had a large tumor removed on the.2nd pituitary surgery, the surgery went good, however i have a residual tumor growing again in the pituitary, have a high ACTH and each month its higher. I've done cortisol saliva tests, waiting on 2nd round of tests. Had found an awesome endo, who now after only 2 visits, is leaving the clinic and hospital so I have to start all over again. Now, I was just told I have a tumor inside my kidney, unfortunately I only have the one kidney..so now I need more tests on that, the hernia surgery I had in 2015, looks like ive pulled another hernia, right underneath the main incision. And when it rains it pours, I have an appt with my hand surgeon, again, as I need the carpal tunnel surgery done now on my right hand I can't wait any longer, having major problems with it, number 18 hand surgery. So you ask what your recovery should be, each of us is different, have different symptoms, different response to medications, different surgical needs, depends on how long it took them to diagnose you, what supplements you need after surgery. You could do really well and be back up to par in 3 to 6 months or it could be longer. I'd be discussing prognosis, surgical and hospital stay, and recovery time. There is no scar for this surgery, on your head, they operate up through your mouth and nose. This last surgery i was up the next day walking around the hospital floor with no walker, walked it 3 times with no issues. Was out of hospital in 2 days. If you have any questions feel free to ask.

  • Posted

    Hi.  They do not usually remove the Pit Gland just the tumour except in rare cases where the tumour is growing round or into the Gland.  It is good that your consultant is having a meeting to decide how to go forward.

    I have always stresses that what we say on this forum must be an honest answer.  When you have the op they will tell you that 24 hours after the op you will feel worse than you have ever done before and in all honesty they are right.  It is because of the withdrawal from having so much Cortisol pumped through your body.  The body suffers this withdrawal and will make you feel lousy.  But things will improve and soon you will be able to get on with your new life!  It is worth all the bad symptoms just to be rid of the disease.  Keep us up to date.  Well done for being brave!

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