Skip to main content

Cushing's Surgery FAQs

I get a lot of questions about my surgeries, some general questions, some come from Cushing's patients themselves.  I don't think I've ever gone into a ton of details before, so here it comes.  

Cushing's Specific Questions:

Pituitary Surgery

Q:  Did they find the tumor easily?  Why did you have 2 surgeries?

A:  I had a clearly marked tumor on my pituitary MRI (see below), but no, they did not find a tumor at all.  I had a second surgery to remove the half of my pituitary gland where the tumor was.



Q:  Did you feel any different after pituitary surgery? 

A:  After my first surgery, I felt immediately like I didn't have Cushing's Disease anymore.  I felt less swollen, and generally deflated.  After the second surgery, I felt the same going in as I did coming out. 

Q:  What medications did you have to take post-surgery?

A:  The only medication I had to take was dexamethasone.  It's a high dose steroid, that I took for a few weeks after surgery to make sure I wouldn't have problems with adrenal insufficiency. 


Adrenal Surgery

Q:  Do you still get adrenaline rushes?  

A:  Yes, my brain can still make adrenaline but not as much of it.  When faced with a dangerous or anxiety provoking experience, I have the same emotional reaction as anyone, but not the same physical rush.  (By the way - most people confuse adrenaline with dopamine, at least the feelings.  When you are confronted with something exciting, but something that you enjoy, that's dopamine.  When you are confronted with danger, that's adrenaline.  Sometimes they overlap). 

Q: What medications do you take?  How do you remember to take them?

A:  At this moment, I take Cortef 10mg, Florinef 0.05mg twice/weekly, Levoxyl, Liothyrinine, Omeprazole, Ranitidine, and Vitamin D.  This changes frequently, the doses anyway.    I remember to take them most days, especially the Cortef and Levoxyl, because those medications, if not taken, can make me feel gross.  The Vitamin D is a tough one to remember, because it's once a week, but I usually set an alarm on my phone. 


Q:  Have you ever had an Adrenal Crisis?

A:  Yes.  I was on vacation, forgot my medications, and had strep throat, but 2 different strains.  I had my pills, but no syringes, and made a series of not so great decisions, like driving home before going to the hospital, and not insisting on getting a syringe from the pharmacy.  I was in the hospital for almost a week, my blood pressure was dangerously low, and I was delirious most of my stay.  I would rather not do that again.   Lesson learned.


Q:  How much weight did you lose?

A:  I was 285lbs before my BLA, now I am (drum roll please) 150 lbs! (I fluctuate from day to day)  So that is a grand total of 135 lbs lost - a whole person.  Yay!  And no, I did not have to do a whole lot to lose it once I got on the right medication doses. 



Do you have any questions for me?  If so, I'd be glad to answer them!



Comments

Popular posts from this blog

2 Years Since my Adrenalectomy...would I do it again?

On September 2nd, 2010, I spent the day in one of the many operating rooms at MGH.  I had spent the night before talking and texting to friends and family, after seeing Wicked and going back to the hotel across the street from the hospital.  I cried a lot, because of the scary and fairly dangerous surgery ahead, because of the hope that this disease would FINALLY be behind me, and because of the long recovery ahead.  I woke up early and walked across the street with my mom, and my dad met us there.

The wait that morning was incredibly long, my 2 other surgeries in the 9 months prior had been very early and a pretty short wait.  I cried some more (no one should be surprised by this), and finally headed into the prep room.  I met with my surgeon one last time, and kissed my parents one last time.  As I waited in the cold, dark, cement hallway outside the numerous operating suites, a surgical resident marked the incision sites.  I knew there would be many small incisions, but having the…

Cushing's Awareness Day

Over the past 8 years, I have spent a few Aprils blogging every day for Cushing's awareness.  I will not be blogging daily this year, but don't want to let the month go by without spreading some awareness!


April 8th is Cushing's Awareness Day because it is Harvey Cushing's Birthday.  Harvey Cushing is the father of modern neurosurgery, and he also was the first to discover Cushing's Disease in one of his patients.  You can see a drawing of his patient (Minnie G) in many text book articles about Cushing's.

Cushing's Awareness Challenge - Day 29