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Cushing's Reoccurrence

A lot of people that have Cushing's Disease are cured after one pituitary surgery to remove the adenoma.  Some have to have another pituitary surgery, fewer have radiation after the second pituitary surgery, and even fewer end up having a bilateral adrenalectomy (BLA).  A BLA is considered a final cure, theoretically you can never have Cushing's again because the source of cortisol production is removed.

Unfortunately, I don't think this is the case for me, and a few others.  Over the last few months, I have been either gaining weight slowly or fluctuating rapidly between weight loss and weight gain.  This hasn't happened to me since my BLA, and along with the reappearance of some other symptoms including insomnia, buffalo hump, and all of my scars and stretch marks turning red or dark again,  I think it's back.

In a small number of cases, there can be cells of adrenal tissue that are left over after a BLA, which can grow and reproduce and cause cortisol production again, or you can have adrenal tissue somewhere else in your body.

I posted about this about a month ago, but more and more recently I think that it's true.  It's frustrating and scary to think about doing this all over again, but hopefully I'm wrong and it's something else (doubtful, but maybe..).   Unfortunately, there is always a risk of Cushing's returning, no matter what you do to stop it in it's tracks.  When I was first diagnosed and researching what they can do to cure it and how effective it is, I thought I would never ever ever be in the position I am now.

Have you had a reoccurrence after surgery?  How did you deal with it?  Was it surprising to you or were you expecting it to happen?

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