New Message on Pituitary Chat

Cushing's Disease (moved topic) The Pits

Reply
  Reply to Sender   Recommend Message 2 in Discussion
From: MinnieChat

Elaine,
We haven't talked so much about full pituitary removal, but this is actually one of the treatment pathways for Cushings disease should pituitary selective adenoma resection fail. Cushings disease is a tough disease to diagnose and a tough disease to surgically cure. In patients who do not achieve chemical remission, the next steps are and can be a combination of:
 
repeat surgery
radiation
pituitary removal
bilateral adrenalectomy
 
In the past, the bilateral adrenalectomy was typically reserved for the final step to put the disease in remission should the other options fail. Simply put, in the past, the chance for death was higher in adrenalectomized patients. However, that  gap has shortened now, (due to improvements in surgery and postoperative treatment). Some centers now put a bilateral adrenalectomy as being preferred to full pituitary removal.
 
Some centers feel that full pituitary removal is the better option.
 
I know patients who have done aradiation and have done well.
 
Where I am getting to is that treatment can be very individualized and it is important for you to work with your doctor to ensure that the treatment option selected is the best for you and your particular situation.
 
I am assuming that is why full pituitary removal is being recommended.
Typically, the surgeon tries to salvage part of the gland (the posterior portion) so that you will not have to take DDAVP to replace your vassopression. The posterior pituitary makes vassopression which controls your water balance. When this hormone is disrupted, it causes an insatiable thirst, and constant trips to the bathroom. This can be a very dangerous condition, and must be carefully monitored and controlled.
 
After your pituitary is removed, you will need replacements for thyroid, cortisol, and possibly reproductive hormones and maybe even growth hormone. The thyroid and cortisol replacements are the must haves (you could die without them). You need to talk with your endo on thoughts regarding reproductive hormone replacement and GH replacement.
 
We have some members here who are hypopituitary. Some are hypopituitary because of surgery, some are because that is how God made them, and some are because pituitary tumors have damaged their glands. I am hopeful some of them will give their insight on how they have dealt with hormone replacment and their quality of life post operative.
 
As a cushings patient, I will tell you that it will take you about a year post op, before you begin to feel more like yourself. Your body will go through cortisol withdrawal. It is tough, tough, tough. Take each day one at a time. After your body gets adjusted to not having too much cortisol in your system, expect underlying disorders to manifest and deal with them as they come. Common issues are liver problems, gall bladder problems, work on increasing your bone density if you have osteoporosis, and you may have problems that show up. Try to remember that you had these issues all along, its just that the cortisol masked. My biggest realization was how much pain I was in post op. Muscle pain and arthritic pain had been masked by the cortisol. What made it worth it for me was I was building muscle strength for a change. I could lift things. I didn't tire as easy. I had endurance.
 
I hope this helps.
I am sorry that you are still battling the disease. Often we think that once we are diagnosed (a battle in itself) that surgery makes it all go away. 30% or more post op cushings disease patients end up facing that the battle really just got started.
 
Take care, and be strong.
 
Minnie 
 
Minnie

View other groups in this category.


Also on MSN:
Start Chatting | Listen to Music | House & Home | Try Online Dating | Daily Horoscopes

To stop getting this e-mail, or change how often it arrives, go to your E-mail Settings.

Need help? If you've forgotten your password, please go to Passport Member Services.
For other questions or feedback, go to our Contact Us page.

If you do not want to receive future e-mail from this MSN group, or if you received this message by mistake, please click the "Remove" link below. On the pre-addressed e-mail message that opens, simply click "Send". Your e-mail address will be deleted from this group's mailing list.
Remove my e-mail address from Pituitary Chat.

Reply via email to