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.

Four Weeks to Freaky Friday

It's exactly four weeks until my scheduled surgery. In twenty eight days, Lord willin' and the creek don't rise, as an old friend of mine likes to say, I should be on the road to Johns Hopkins for a little facial rearranging. I commented to a friend today that I'm looking forward to it like a hole in my head, then had a good chuckle thinking of how that's exactly what we're talking about here.

I haven't done a thing in preparation and now I'm frantic to play catchup. I don't have an appropriate chair to sleep on after the surgery. I expect to be swollen and incapable of lying on a bed for a few days afterwards. What about the physical, the lab tests, the chest x-ray, the dermatological checkup, the visit to the dentist for one last cleaning? What if somewhere along the line something unexpected crops up and the surgery is delayed? Sure, the fifth grader in me would love to see the big test canceled due to snow, but the grownup knows it's just a delay and not reprieve. What about the house? I should be at home rearranging it all, painting, throwing out all the accumulated junk, improving the bathroom and making it more accessible to someone who expects to be a bit of a mess for a few days. What about my work? How much time should I take off? Should I schedule things and just hope I'm available? Lots to think about.

What about recovery? I was thrilled to find a post on my favorite site, the parotid tumor patients forum, from someone who has the exact same surgeon. His surgery went very well - only a little facial weakness afterwards - but today I felt a little whimper of anxiety when I discovered his post about follow-up, where he referred to seeing the doctor and getting a referral to a speech therapist. Speech therapist? Why does he need a speech therapist? Did the operation hurt his speech? Does that mean it will hurt mine? We all know I talk for a living, right? I mean, I don't just talk every once in a while to communicate with co-workers or present projects. No, I talk morning, noon, and night. My living is built around my ability to talk. Heck, all three of the ways I make my living - practicing law, performing marriages, teaching college students - are built on this glib tongue. Talking is probably my second favorite activity in the world, right after reading.

Looks like the next few weeks are going to be rather stressful. I'll just have to resolve to find out from my doctor the answers to some of these questions instead of being such a wimp. Okay, maybe I'll have a few issues afterwards, but there's no reason why I can't find ways around such difficulties. Maybe the comment about a speech therapist wasn't even related to the surgery. Maybe I'll just have to say "what the hell" and move on. Stressing over it won't help. Oh well, the ball game's on - Washington Nationals v. Baltimore Orioles! Well, I can't miss that. Go Nats!

Start the Popcorn - A Couple of Interesting Videos

While perusing the parotid tumor patients' forum I found a post from a contributor of two videos floating around the internet which demonstrate parotid tumor surgery with the help of a nerve monitor. The monitor helps prevent facial paralysis by sounding an alarm if the surgeon starts damaging the nerve.

The first video is a straight-up surgical instruction video from the University of Michigan. There's almost no audio and little explanation, but it's a good peek into the technique used for such surgeries. Here's the link: http://anatomy.med.umich.edu/surgical_videos/parotidectomy.html

The second is the following from Dr. Kevin Soh, of St. Elizabeth Medical Center in Singapore. This is a very helpful which not only gives a clear explanation of the anatomy of the facial nerve, but explains how the nerve monitor works and demonstrates the surgical techniques used. Neither one of these videos is for the squeamish.

Guess what, Ma? It's another PA ...

It was off to visit with my ENT's partner today. My ENT was out of town and I couldn't stand to wait for the biopsy results next week, so talked them into letting me come in and see the partner instead.

After I waited a half hour a young doctor strolled into the room. When did doctors start looking young enough to be my kids? I immediately decided he was the Chinese Doogie Howser (TV show back in the 90s featuring Neil Patrick Harris as a 17 year old doctor -- guess you had to be there). Anyway, Dr. Doogie was very polite and nice and told me I could probably guess the diagnosis. Yep, it's another pleomorphic adenoma. The good news was that the FNA was benign. Whoop-tee-do. Most of the old hands here know that it's great to have a benign FNA, but you can never say never till the cuttin's done.

Dr. Doogie had enough sense not to talk down to the plump gray-haired lady with the irritated countenance. "Guess you know what that means", he ventured. "Another surgery," I replied. "Yep, I guess it would be what, your third or fourth?" "Try sixth," I said. His face fell a little. "Well," he said brightly, "the usual recommendation would be the surgery and then you should probably consider ..." "RT," I hastened to reply. "Yes, I just finished it in November."

The kid looked crestfallen, so I decided to go easy on him and let him talk. He told me that patients like me are never easy (heck, I knew that, just ask my college boyfriends), and the options for someone who's had RT are limited and doctors hate situations like mine. Sorry to hear I'm upsetting you guys. Anyway, to boil it down to its essentials, we have an escalating menu of varying surgical interventions.

The first option is to just go in there and scoop out the offending nodule, trying as much as possible not to damage the nerves. When last I went through this cafeteria line the doctor's options were pretty straightforward. He went in there, popped out the nasty nodule, then sent me off to RT in the hope that baking the tumor bed would finally cure me. Now we've got an already fried (oops, baked) tumor bed, which means that the surgeon may have to spend a lot more time fishing around for tumor cells and little teeny tumors in their tumor pre-schools, and try to get rid as many as possible. It's possible that we're looking at some nerve impairment because he may feel compelled to dissect the nerve. Think along the lines of someone who uses a knife and fork to peel meat away from a chicken bone. Hard to do it without nicking the bone.

The second option is not so much an option as a main course at the banquet for the mandatory seminar your boss made you attend. Everybody has to pick one of two or three choices. The first problem concerns the skin lost through multiple surgeries. I've already had two re-workings of my scar, so we're beginning to run out of space on my face. Eventually, if we continue with frequent surgeries, we'll have to find a source of skin to slap over the spot. I immediately thought that a loss of skin from my hips, rear, or thighs wouldn't do me any harm, but apparently they usually take the skin, along with some veins to provide a blood source, from the forearm. Not fun. I'd rather send the dish back to the chef.

The third option is a radical parotidectomy. I pointed out that I've already had a total parotidectomy, which he acknowledged, but he pointed out that the only way to destroy whatever it is which brings out my tumor tendencies is to clear the deck and set a new smorgasbord of blood vessels, nerves, skin, and some muscle on that side of my face. He added that a portion of the nerve running to my tongue could be redirected toward my mouth to alleviate the droop, and said I could always get the gold weight in my eyelid to force closure of the paralyzed eyelid. You folks who've been through the radical stuff know what he's talking about. This option would require major reconstructive surgery, something my ENT is not able to do, and would probably require a referral to another hospital - most likely Johns Hopkins.

He told me several times that he felt I should talk to my ENT, and reminded me that I could always ask for a second or third opinion. I was thinking it wouldn't hurt to show up at an ENT convention with my films and highlighted copies of my medical records.

At least we agreed on an imaging study, so I'm off to the MRI on Wednesday evening, and will meet with my regular ENT on Friday. Dr. Doogie told me he wanted me talk to my regular doctor before jumping to any conclusions about my prospects. Still and though, this isn't looking too great.