Summer/Fall 2005
My hospital stay went well. I was up and walking the very next day. I wanted those Ted's socks OFF and they told me that they were staying on until I was up and walking, reducing my risk of clots...so I was very motivated.
All considered, I felt pretty good. I don't know if it was simply relief from waking up from brain surgery, excitement that I had partial vision back in my right eye, having my family rally around me, or if my body actually felt some immediate relief from what had become a daily challenge. Whatever it was, I remember feeling better than I had in a long time.
I had staples in my stomach from the incision where they took fat to pack my spinal cord to avoid seepage. I had to have instructions on how to maneuver so as to sit up without causing myself the spins or main in my stomach. To this day, I don’t understand why they couldn’t have done some cosmetic surgery on my abdomen since they were already in there. Cushings – a medical condition – caused the issue, so why not fix it while I was under? Someone needs to think about that! But that is a whole additional tangent that I could get off on…
What no one told us, what would have been helpful to know, was that we were awaiting a ‘CRASH.” I don’t think I even really understood what a crash was until weeks later. What the doctors failed to tell me was that my body was going to freak out as soon as it realized that I was not producing high levels of cortisol anymore. I didn’t understand the concern regarding Adrenal Insufficiency - Hell, I didn’t even know what AI was! They faithfully tested my blood and vitals and came in and out for 5 days. What I didn’t understand at the time was that I didn’t have the crash they thought I would. …at least not while I was in the hospital.
The worst thing I endured while at the hospital was the packing and stints in my nose. I became aware of them a started to feel them on Sunday, (2 days after my surgery). As my passages started to dry out, they started to annoy me and I started to ask about getting them out. The nurses were vague and only upon persistence did the ENT agree to come and see about taking them out. He arrived EARLY one morning to remove them. I was a bit dazed and sleepy – and for that I am grateful. Removing the first side of packing brought me to a level of pain I was unfamiliar with. While still spinning from the first side, he quickly removed the other side. I clearly recall the room spinning. OH.MY.GOD. Once the pain subsided to a point that I could focus my eyes, I was astonished at the amount of packing that had been inside my head. The two worst experiences I recall with clarity during my surgery itself involve the ENT.
So, I was released from the hospital on Wednesday, June 15, 2005 5 days after my surgery. I was excited to leave, but woke up feeling worse than I had during the entire hospital stay. The ride home was excruciating. I felt every bump and jiggle in the road all the through my spine and into my brain. I was in tears before we left the hospital parking lot, but I was so glad to be home in my own bed. I was ready to heal and get on with my life as soon as possible.
By Wednesday evening, I wasn’t feeling so hot. I was in pain – worse than any I felt in the hospital. I slept very little that night. Thursday didn’t bring anything different. If anything, I felt worse. I was taking the oral RX pain meds but they weren’t settling well. I was in severe pain. EVERYTHING hurt and the medication they had giving me wasn’t helping, as a matter of fact, it seemed to be causing me problems. It was so bad that I remember telling my mom that I thought I was dying. They called the ER and the Doctor and found out all about the “CRASH” that I was obviously having. Again, this might have been useful information to have had PRIOR to going home so I knew what to expect. I was given some hydrocortisone to help prevent AI and after about 3 days, my body started to adapt and I officially started down the path of weening.
My mom was with us for 2 weeks after my surgery. She cooked and pretty much did everything. I couldn’t bend, or pick anything up and quite honestly, I felt terrible. My muscles were so atrophied from the months prior that I was pretty helpless. I took little walks, ate a little and slept a lot.
I remember the night the first little bit of my taste came back. My mom had made dinner and I was eating a little bit, and suddenly I realized that I could taste a little bit of it! It took a few weeks for the numbness in my nose, teeth and upper lip to return as well as all my taste to all go back to normal. I had and still do sometimes have an odd sensation in my nose if I rub it wrong.
I still have trouble remembering the weeks immediately following my surgery with any clarity. I am grateful that I had long term disability insurance at my work so I was not in any hurry to get back to work. As a matter of fact, that additional $4/pay check for long term disability insurance turned out to be one of the smartest things I ever did. I had once been told that you are more likely to use short and long term disability than you are life insurance, so if you have the option, you should ALWAYS elect to get it and buy as much as you can. Again, I digress…
A couple final notes about my hospital stay: I recall my endocrinologist coming to see me one time. I was walking in the hall way and he stopped to tell me that I had a cure and that I needed to come in to his office in two weeks to get set up on medication. Later I found out that he billed us thousands of dollars for a brief 30 seconds of his time in a hall way by an elevator. Also, I remember the surgeon coming in as I was getting discharged. He came to tell me two things that he thought I should know. First, moving forward I would probably be very susceptible to heat and not react well to getting overheated. And the second…I have no idea what he said. Today, I look back at all that we have learned and all that we have figured out by ourselves and I am in awe of that fact that he only had 2 things to tell me! Yet another instance to prove that there is still so much that even our medical professionals need to learn about Cushings!
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