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 everyone will have this experience.  I had really wished they allowed my mom to this point with me.

If you are about to have pituitary surgery, I would recommend the following things:

1.  Bring your own tissues, and splurge for the nicest, softest tissues you can find.

2.  You will want lip balm too, since breathing through your mouth for 2 weeks will be drying.

3.  I always love having my own pillow and a fuzzy blanket in the hospital.  It helps it feel a little more like home.

4.  Bring slippers (or flip flops, my favorite) to the hospital.  You will be walking back and forth to the bathroom, and maybe around the floor.  You are usually not allowed to bend down, so footwear you can quickly and easily slip on and off are best.

5.  Bring clothing that is easy to take on and off, and dress in layers (if you are allowed to wear your own clothes).  Due to hormonal changes, I went from being freezing to sweating in a matter of a few minutes.  

I had 2 pituitary surgeries, and both were quite easy for me.  I also wasn't cured by either, so that might be why.

Adrenal surgery is a different story.  I had a much harder time with this.  Again, people's personal encounters with adrenal surgery widely varies.

I truly did not think I would live until my surgery date, or live through it.  I was 300lbs, couldn't walk around easily, and felt horrible.

I have written extensively before about my bilateral adrenalectomy (BLA), so you can read more details here, here, here, here (this is one of my favorite posts I've ever written), and here.

Here are some things I would recommend:

1.  Don't hesitate to put a date on the calendar.  I was very scared for a major surgery that would leave me depending on medications to live.  I was trading one disease, that would for sure kill me, for another that might not.  But, I would not be alive today if I hadn't done it.

2.  You might feel worse after surgery than you did before.  Don't get too scared about this, usually after a month or two this will get better.

3.  Stay with your parents, or someone you love if you live alone after surgery.  I stayed with my mom and grandmother for about a month after surgery.  I eventually moved in with my mom. Not ideal for someone my age, but a necessary adjustment for me to live my best, healthiest life.

If you have any questions about my experiences with these particular surgeries, or want to share your own story, leave a comment below. (Edit- this is the 200th post on this blog!)

The week before my BLA

A few days after my BLA (I was bigger, due to increased dosage of steroids after surgery.)