Hi Laura,

Some CAHers are difficult to control, even with high doses of meds.  The androgen breakthrough is causing problems, and the high doses of meds are causing problems.  The idea of adrenalectomy is to do away with the excess androgens.  Once the adrenal glands are removed, the androgen problem is eliminated and patients can use normal replacement doses of meds, much like Addisons patients.  That’s the up side.

The down side is that once they’re gone, they’re gone.  Another problem is that it leaves the patient 100% dependent on meds.  In an emergency situation where meds are not available, most CAHers can make at least some cortisol on their own (along with tons of androgens).  Once the adrenal glands are gone, they can't make any.

Our first endo mentioned it as a possibility when it looked like my older daughter was going to be difficult to control, so I read up on it.  Sounds like a last resort to me, but possibly beneficial for really severe cases. 

Laura K