My Johns Hopkins Adventure

Cross-posted to the Parotid Tumor Patients Forum

Well, it's been a wild ride through this latest surgery with some unexpected results, but not too bad from my point of view.

I was scheduled for a total parotidectomy on July 25th at Johns Hopkins University Hospital with Dr. Christine Gourin. This was to be my sixth surgery and my second total parotidectomy.

After a long evening of last minute work and preparation I showered at 3:00 a.m. and got ready for my trip to the hospital. At first the omens didn't look good. I couldn't sleep. I puttered around doing laundry. Realizing I'd left my slippers in the car I went outside to my Ford Explorer and popped open the glass hatchback so I could rummage around for the slippers somewhere within, only to have my cat walk along the top of the car and step on the hatchback, slamming the metal U-clasp down between my shoulder blades and sending me dancing around the street cursing loudly for a full minute, which I can only hope was not heard by the cute young family that just moved in last week. They sleep with their windows open and I had to wonder what they thought of the insomniac madwoman next door. Call me crazy, but I think the cat did it on purpose.

Nora arrived at 3:45 and we made wonderful time to Baltimore, which was good because we managed to get lost for about 30 minutes. Nevertheless, we arrived before the 5:30 a.m. deadline. The waiting room filled with patients and their families, and a woman came through with a clipboard, rounding up patients. We progressed in a group through a door to another room, a ward with about 20 beds, a number posted above each. As we shuffled through the ward the director(?), nurse(?), MC(?) called names and assigned beds. I got number 14.

Pre-op was a dizzying process of people popping in and out of my little curtained cubicle, confirming information, drawing on my face (doctors and their markers!), setting up the IV, asking me about my history with anesthesia, asking about my Health Care POA. A stream of friendly, helpful people with names like Laura, Lauren, Brandon, Brendan, Bridget, and others whisked in and out, and shortly I was on my way down the hall to the operating room.

As I got on the operating table I was impressed that they had remembered my request to place a pillow beneath my knees to help my lower back. They were a little unsure of what to make of my comment that the table with its cruciform arms looked like a Texas death chamber.

In what seemed like minutes I awoke in the recovery room and knew immediately that the surgery had not been as extensive as planned. I could feel my entire face and my speech was clear. I was uncomfortable, but not intolerably so, and was too thrilled at the lack of facial paralysis to care.

Dr. Gourin came to visit later that evening. I introduced her to my kids and she told me that once she got in there she realized that the scar tissue was obscuring everything. She described my facial nerves as being all over the place, and the tumors as having been on the nerves. She never did find my facial nerve trunk, having given up looking through all the scar tissue due to fear that she would do irreparable damage. She said that she was satisfied that she'd gotten all the tumors this time around, but noted that I cannot consider myself cured. We're actually just hopeful that if I have a recurrence it will be several years before it recurs. If it does recur she's now proposing to go in there and do what she did this time instead of going through a nerve sacrifice as she'd originally proposed. I don't know if this is because there is so much scarring there that success of a nerve graft would be unlikely, but I'm willing to take a chance as long as I can talk and move my face. She told me the drains could be removed and I could be discharged the next day.

Living with the drains was an adventure. I have a hole at my belly button and one below, where the drain was located. It was very pinchy and annoying trying to move around with it. There was another drain under my ear. My face is very round on the left, stuffed full of my belly fat as it is, but it looks to me like I'll finally lose that sunken look I had on my neck. After a day of recovery a doctor came in and pulled out the drains. We went for the abdominal drain first on the assumption it would hurt more - the doctor snipped the stitch holding it in and had me breathe out as he pulled. The facial drain was just nasty. He wasn't part of my surgical team and was surprised at the length of the thing. I yelped in pain when it came out, but after an hour I felt pretty good.

My daughter drove me home, threatening to wreck the car if I continued with my helpful driving advice. I gingerly climbed the steps, the young family next door trying not to stare too inquisitively at my new look. At home I've been bored to tears and horrified at the state of American television in general. The dog was happy to see me but the cat was completely freaked out over my disappearance and dramatic reappearance with a different facial appearance - if you follow my drift - and not until the early morning hours of the next day did she consent to come back inside and stay with me. She might have been worried about what I remembered of her previous attempt on my life. Once the decision was made to return she promptly made herself comfortable on my punctured lap. This morning I had a long shower and nothing popped out or rusted, so I think I'm on the road to recovery.

All in all, this was not a bad experience. Not only was I impressed with Dr. Gourin, but also with the responsiveness and competence of the Hopkins nursing staff. Even a call in the middle of the night is not ignored as it is in so many other hospitals. Eating's a little sloppy, what with the stiffness in my jaw, but it doesn't really hurt and I've been able to nibble on pieces of bread without difficulty. No problem in a few days.