Wednesday, April 11, 2012

Day Eleven of Cushing's Awareness: I'm a survivor!

One of the first pics taken after my surgery.
Beautiful, eh?  
My next memories are of waking up with my family looking down on me.  They had a washcloth on my head and were telling me that they got it all and removed 25% of the left side of my pituitary and 5% off the right. They told me I didn't have a cerebral spinal fluid leak, which was a big worry due to my increased brain pressure issue.  I remember of all the things that happened to me,my right shoulder was absolutely killing me.  They gave me a shot of dilaudid and I immediately thought I was going to throw up.  They gave me some Zofran and kept me in recovery for a bit.  I had been told I would be going to the ICU, but apparently I was stable enough to go to my own private room on the Neuro floor.  I remember being wheeled to my room, nurses everywhere checking all my stats, getting me situated and checking my pain levels.  I was SO thirsty.  They would only let me have ice chips that night.  My poor husband and mom were up half the night feeding me ice chips.  It was horrible how thirsty I was.  I was also burning up.  I felt bad because they were both practically wearing winter coats and I was on fire!

The next day they wanted me to try and get up at some point.  I was in entirely too much pain and didn't think I could manage it at all.  I had tears constantly running down my face, yet I wasn't crying.  I had no idea why this was happening.  The pain was much more intense than I had anticipated.  I had read about other people who had already been on this journey through this surgery and most seemed okay with pain fairly quickly.  Why was I hurting so badly?  I have a very high tolerance to pain.  Finally, my mom decided to tell me the whole story.  Apparently I had a nose job in order to have the surgery.  They had to resect my middle turbinate in order to get access to my pituitary.  Apparently mine was quite prominent and they couldn't fit the instruments inside without a resection being done.  I wasn't just dealing with the pain of brain surgery, I had intense bone pain on top of it all.  The Neurosurgeon resident told me that the tears were from my pain level.  At least I didn't have to worry that I was going to be a freak with tears running down my face forever.  lol  That day was very rough for me, but I made it through.  I still did not manage to get out of bed though.  I think I would have dropped to the floor if I even attempted to stand on my shaky legs.  I was able to get pain meds roughly every two hours.  One being an injection of morphine and then 2 hours later they would give me percocets.  It helped somewhat, but after an hour and a half I was practically begging for more.  I would literally count down the minutes until I could beg for drugs.  Once again,  I have a very high tolerance to pain, but this pain was just so intense.  I was able to have a normal diet, but I mostly only wanted soup or jello.  The roof of my mouth, especially above my top two teeth was extremely numb and there was a flap at the back of my throat that had been sliced and hurt from being intubated.  One of the awesome things about MD Anderson is they have a 24 hour Starbucks!  Mind you, I couldn't taste or smell anything but just knowing that it was a Starbucks helped me feel at home. lol  I couldn't taste or smell for at least three days.  I was starting to get concerned that it wouldn't return.

I believe it was Saturday evening or early Sunday morning I finally felt strong enough to try and get out of bed.  The first thing I wanted was that darn catheter out and I wanted a shower.  My head felt and looked like it had been coated in vaseline.  It was disgusting and I cannot stand feeling greasy.  Hubby had to help me get showered and I had to sit for the majority of it because my legs were practically buckling under me.  My vision was also very blurry and I felt extremely dizzy.  However, that shower made me feel a hundred times better.  After my shower I rested a bit more and they wanted me to do a couple laps around the nurses station.  I clung to my husband and did my laps.  I couldn't believe how weak I was after this surgery.  It's like my body forgot how to work properly.  It was utterly annoying.  The pain was still very intense, but I felt like I was starting to come out of the woods a bit.  I'll go into more detail about the following days tomorrow.

Now for some diagrams about the surgery I had.  It was called a Transsphenoidal resection of pituitary microadenoma.  This website for the Mayfield Clinic has an amazing explanation and diagrams of what happens during this surgery.  Click on any of the pictures to be taken to their website.  The first two images have different links.


  1. I had the very same issues with pain, and got the nosejob, too! The nurses weren't understanding why I hurt so much and were pretty stingy with the meds until another visiting Cushie convinced them otherwise.

    I didn't know about the Starbucks! Another benefit to MDACC!

    1. I LOVE you Honey!
      I'm hoping your story helps a lot of other Cushie friends. To believe in themselves
      To go with there gut feeling
      To know that they are not alone and most-important
      To never give up!!!!!

      Love MOM