The Ordeal -Part 2

As I prepared for surgery, I looked at a a number of different surgeons with my primary goal being cure rates. Cyclical Cushings has a lower cure rate than florid Cushings and depending on the literature the cure rate of a first surgery ranges from 40%-70%. There are a number of studies published that prove that cure rates go up dramatically with an experienced (over 1000) pituitary surgeon. Those statistics really only leave 3-4 surgeons in the US. I decided on Dr. Ian McCutcheon who does surgery at MD Anderson Cancer Center in Houston. He does a Cushing's adenoma every week or so (actually a very large amount considering the rarity of the disease) and is the unequivocal expert on the pituitary gland. One of the things that really endeared him to me is that he reads MRI films for free in his spare time for people trying to be diagnosed.
Jason and I flew to Houston Monday Feb. 23rd and left the kids in the superb care of my mom and my Aunt Kristie.

I had my appointment with Dr. McCutcheon at 9:30 the next morning and was more impressed than I can say with him. He spent about 45 minutes with me and Jason going over hundreds of views of my latest MRI and explaining why he saw a tumor or suspicious areas of the pituitary even though some read the film as normal. His knowledge was truly staggering, but he never spoke down to us or made us feel as though we weren't part of the process.

He estimated the tumor to be around 5 mm but stressed that until he actually got inside the pit, he wouldn't know. He explained that the risks and how he planned to minimize them. For example, he said there was a risk of damage to the optic nerve, but in all his many surgeries he had yet to blind anyone! He said that there was a risk of a cerebral spinal fluid leak because of the proximity of the dura (this is similar to the plastic bag that surrounds your brain with spinal fluid and keeps it hydrated and less weighty.) If that happened he would plug the leak with a piece of abdominal fat and I would have a lumbar drain in my spine coming out of surgery.
He would approach the pituitary through my nostrils and carve out little bits of my sinuses to make room from his instruments. The surgery itself would take anywhere from 3-4 hours and I could expect to feel tired and have a bit of a headache for a couple of days. I asked him about seeing an in-house endocrinologist and he gave me a little smile and said, "We don't do that anymore." When I asked him why, he said that too often the local endos would try to convince the patient scheduled for surgery the next day that they needed more testing. He said by not seeing them "we minimize unpleasant feelings." (Very diplomatic!)

After seeing Dr. McCutcheon we were sent to billing, the lab, and anesthesiology. I will say that MD Anderson is a truly staggering hospital. They have more than 20,000 employees and it is run with an efficiency that is remarkable. I was in and out of the lab in less than 10 minutes despite the waiting room being full. Twenty minutes later in anesthesiology my labs were already available on the anesthesiologist's computer! We were out of the hospital with a surgery call time of 6:00 AM by 1:30 in the afternoon.

We went back to our hotel and took a nap, ate at Fuddruckers and headed for the mall. I made Jason make friends with a salesperson at Sephora and made him buy some new cologne. (He never likes what I pick out for him.) We then went back to the hotel and slept.
I was up and not overly anxious by 5:00 and we arrived in plenty of time. I was ushered to a surgical waiting room of sorts where I had to gown up and wait. Jason took an ugly picture, and we joked around. A little before 6:00 my team came, I kissed Jason, and they drove my gurney to the operating room... from there everything is a little bit fuzzy except for the pain....that I remember in great detail!

I remember hearing that my tumor was actually larger than expected (10 mm which is a larger microadenoma) and I had experienced a CSF leak during surgery. They had patched it up and inserted a drain in my spine to drain off approximately 10 ml every hour so that the pressure wouldn't be too great on the patch. Dr. McCutcheon was confident he removed all of the tumor. He said that as soon as he made an incision the tumor actually started squirting like toothpaste. Gross! The tumor wrapped around the pit and actually was close to causing some visual disturbances due to its location near the optic nerve.

Jason stayed in Houston until Thursday night, but to be honest I don't remember much about it. My fabulous sister Kari came on Thursday and spent what she has called "the worst week of her life" taking care of me. For some reason, we had a really hard time getting rid of pain. The tried morphine, dilaudid, codeine, and I can't remember much beyond shaking in pain.

One of the most comforting things was a cool wet washcloth that Kari kept putting on my head. I was really out of it most of the time...couldn't watch TV, read, knit, do any of the things I had prepared for. Due to the drain in my back I had to remain at 30 degrees in my bed for 5 days straight. I couldn't eat a thing and I had these yucky balloons in my nose to keep pressure on the surgical site.

Poor Kari couldn't do anything either. She finally got them to hook up a morphine drip that I could push every 15 minutes and that helped a bit. However, I guess I overdid it a bit and I stopped breathing. I remember a doctor coming in and screaming at the nurses that he didn't like to be called in because his patients weren't breathing and unresponsive. He asked where my little breathing toy was (can't remember the name) and when I didn't know how to use it, he threw it at the nurse. Don't know who he was, but kind of a jerk. Of course, I was then terrified I would die in my sleep and I begged Kari to sit and watch me breathe all night. Bless her heart, she did!!!!

The next day we found out that "someone" had been weaning me off cortef (a synthetic cortisol that your body needs to stay alive after this surgery) from 100 mg the day of the surgery to 10 mg by the 4th and 5th day. This was a potentially fatal slip. I wonder if a lot of the pain I felt was due to my body screaming for cortisol or not. I kept telling Kari in my delerium that I felt weird and I needed to be having 30 mg of cortef a day. I kept chanting it like a mantra. Kari asked every nurse, doctor, aide, and cleaning person who came in how much cortef I had had that day and where it showed in the computer. No one would give her a straight answer so she called Jason who called Dr. McCutcheon and contacted some dear people on my support boards to get a hold of Dr. Freidman. Dr. Freidman spoke to the on staff endo who finally admitted to him and my sister that "someone" had changed my chart and I was going down to a complete wean. I got some more cortef at that point.

My drain came out on day 5 and my headaches eased a bit. I stayed 3 more days in the hospital and then Kari got me on a direct flight to New York. I don't remember a bit of it, but she said I talked to her and carried on a conversation! Jason picked us up at the airport and Kari headed home to Virginia.

The kids were so sweet when I came home. Carter had decorated the entire bedroom with streamers and balloons and flowers. I got lots of love and got into bed ready to recover and put the ordeal behind me. Would have been nice.
Check back soon for the continuing saga.