Skip to main content

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?

Comments

Popular posts from this blog

Plastic Surgery

When I was 17, I thought about getting a breast reduction.  I was still pretty thin at this point and it bothered me to by bigger clothes just to fit my bust.  I had a hard time exercising and always had back pain and grooves in my shoulders where my bra straps sat. I had a few consults with different plastic surgeons and ended up scheduling surgery for the week before my high school graduation.  I ended up "chickening out" because I didn't want the surgery to have any impact on my graduation, and I hadn't had any major surgeries before.  I started gaining weight due to Cushing's shortly after, so it worked out for the best in the end.

Now, my breast size has gone way down since I've lost weight, and even though they are still bigger than average, they don't get in my way as much and are more proportional to my body. These days, my plastic surgery dream is to have a tummy tuck.  I have a lot of excess skin on my body, especially on my belly, and in a drea…

Cushing's Awareness Challenge - Day 9

The only potentially permanent treatment for Cushing's is surgery.  Whether you have a pituitary tumor, adrenal tumor, or ectopic source of ACTH, most often, you will eventually need surgery.

For me, the first step was a pituitary surgery to try to remove the tumor in my pituitary gland. They went through my nose to access the pituitary gland, which means you have no visible scars after.
I was very nervous heading into the surgery, but didn't have much time to dwell on it, as my surgery was scheduled about a week after my IPSS.  I talked to a lot of people before, about their experiences, and heard vastly different stories from each person.
The only thing I remember from before my surgery was being rolled down what looked like a basement hallway (all concrete), while passing maybe 30 operating rooms.  I saw patients in the hallways on stretchers waiting for surgery, I saw into the small windows in the doors to operating rooms, it was a very scary experience.  Obviously, not ev…

The Challenges of Getting a Diagnosis

I have been asked about this so many times, and talk about it a lot, whenever someone asks me about Cushing's.  So many people have the same experience - KNOWING you have Cushing's, and seeing 5, 10, 20, or more doctors over the course of many years before you officially have a diagnosis.  I would say this is one of the most common links I have with other "Cushies".  We all fought for a diagnosis, heard we were just fat and depressed, waited with hope after every test, until a day came when one test came back high, or a brain MRI showed a tumor in the pituitary gland.

I think the reason I haven't written about it is because it's one of the hardest things to sit down and spend time on.  It's painful, and of course, I can't help but wonder what my life might be like today if I was diagnosed sooner.  Would I have needed an adrenalectomy?  Or for that matter, a second pituitary surgery? Would I have as many health issues after Cushing's?  It's ha…