What's to expect after a pituitary adenoma removal surgery for Cushing disease

Hi.  I am sure that some of the others who have had adrenal surgery will reply. I had Pituitary tumour so the op was not the same.  I expect that the after effects will be much the same.  your body has been producing too much cortisol as you know so when your tumour is removed your body will go into withdrawal. when i started this website I promised that we would always tell the truth and the truth is that you will feel awful. Maybe not the next day but the day after when your realises that something is wrong. But this will pass eventually so don't worry.  You are well on the way to feeling so much better and to your body returning to normal. I am sure that others will reply. Chin up and let us know how you get on.

Helen

Vicky is telling the truth..

and i too had pituitary surgery..twice..believe us that you may feel lousy for a bit..but the alternative to not have surgery would place you in greater risk as that tumor is producing cortisol abnormally into your system, and that causes numerous more medical issues to endure. To get it removed and start back to regain your health..

as you will, we are all survivors and living productive lives. Trust your surgical team and keep us posted as we all care about you.

Hi Helen,

Yes I agree with Vicky, you will feel awful but the fact that you will now be getting better makes it all bearable. I had the same as you but mine was on my left hand side. I was in a lot of pain from the surgery, trying to get in and out of the bath was a no no.. I will admit I wanted to give up and never thought I would ever get better.

my body swelled up around 3 weeks after surgery but this was due to my consultant telling me to cut my hydrocortisone down, sadly my other adrenal gland ‘died’ so I’m now on this medication forever. My appearance slowly started improving, it took 6 months for my face to go back to normal and around this time to lose the extra weight. My consultant said 12 months recovery which I thought was rubbish but I can honestly say it was at least this. I still have days of weakness and tiredness but you learn to live with it, i had my operation Sep 2014. I was told I would never work full time again but I do and even fit in the gym! 😃 

All in all, it’s not a nice procedure, an even worse illness but you are now at  the last hurdle, you WILL get better and this will soon be over.

Good luck Helen and I wish you all the best xx

I had my pituitary adenoma resection 6 mo ago.  I'm kind of an outlier as I'm 73.  The surgery itself was not bad at all.  I had some headaches in the hospital but those were all gone within a week. So recovery from the surgery was pretty uneventful.  Recovery from the disease is another issue and different for everyone.  My major problems related to energy, stamina, strength and muscle weakness.  I tried to taper off the hydrocortisone as my numbers looked good initially, but am now officially in adrenal insufficiency so am back on 25 mgm.  I still continue to have issues with muscle weakness, endurance and strength.  I have a lot of stiffness and have leg and back pain with activity.  Will be seeing a rheumatologist.  Labs show that the pituitary is functioning OK so the problem is in the adrenal glands.  That may or may not reverse.  The most important thing post op is having a good relationship with your endocrinologist and being able to talk about how you're feeling.  Good luck to you.  Even with the variable issues of recovery post surgery, you will feel a lot better than you did before surgery!

I may not be correct, However if your growth is on your adrenal gland its Cushings syndrome not disease, I just had my R adrenal removed due to that fact. I will be honest you will feel worse after the removal for quite some time as your body adjusts to cortisol withdrawel. I am 3 months post op at this point and its a slow aggrevating recovery but its diff for everyone, More than likely you will be on Pred or HC for awhile till your body adjusts