Boppin' Up to Hopkins

Cross-posted to the Parotid Tumor Patients Forum

This morning I arose early, put particular vigor into screeching my 17 year old out of bed so he could get to school on time, gassed up the clunky SUV (sixty four bucks?!! Sonofa%!#*$%3$Q$#*@ gas prices!), picked up my friend Nora from the office, and headed up the road to Johns Hopkins Medical Center in Baltimore, Maryland.

We arrived a full hour ahead of the appointment time, which gave us the needed 15 minutes to find a parking space in the crowded garage. The pre-registration clerk took me immediately, looked up my name and information, took a photocopy of my insurance card, issued me an orange card with my name and medical records number, and directed me to the 6th floor.

I checked into Otolaryngology and was handed several forms to fill out. One form tried to assess how much I use my voice and asked me to rate myself on a scale of 1 to 7 for talkativeness. Nora suggested I create an 8th category called "Carla" and circle that. Ah, Nora, such a help. Another one asked a number of questions aimed at determining my mental health status. This is a sensible step which allows for early psychological intervention for depression. We decided I'm not depressed, just delusional, and handed in the completed forms.

We were then escorted to a very cold examination room to wait for the doctor. Apparently the HVAC isn't totally under control in this old building, but fortunately they were dealing with a couple of menopausal women prone to hot flashes so the situation wasn't as bad as it could have been. A nurse came by, apologized, and politely explained that the doctor had been delayed. Sometimes delay can't be helped, but little touches like this help make things easier.

After a long while another nurse entered and said she was going to spray something up my nose to make the doctor's exam easier. Alrighty then, after six of these stupid tumors over almost four decades someone has come up with something I haven't heard of before. She sprayed something up my nose, and then sprayed something else up my nose. The front of my nose became numb and my throat began to feel sore. Think drunk dentist run amok with a shot of novacaine, hitting the nose instead of the gum.

After a while longer the doctor came in. I was immediately impressed with her manner. Naturally, after asking me whether I'd ever had any problem with my nasal cavity and being told no she said she didn't need to do to my nose whatever it was the nurse had sprayed my nose for. A numb nose for nothing - the story of my life.

After interviewing me, examining me, reviewing my file, and expressing delight with the very detailed internet appointment form I'd filled out, she invited us back to a computer to look at the MRI. Just an aside on that form: If a prospective patient fills it out thoroughly, referring back to documentation and including all important details, it provides an excellent supplement to the in-person interview with a doctor.

The doctor did the usual poking and prodding, at one point asking me what the small mass on my jaw was. Hoowhee! Found another one. This lady has some excellent hands because even after being shown exactly where the lump is I have trouble palpating it.

At the computer we looked at my MRI. The doctor ran several frames up and down and explained carefully exactly what she observed. She described the tumor as more a cluster or clump of tumors, and then, upon closer review, pointed out the tell-tale white circle indicating another pleomorphic adenoma on my jawline. She explained that PAs show up quite white on contrast MRIs. Makes me wonder why doctors don't order contrast MRIs more often in such cases. She also pointed out the huge emptiness on the left side of my head (hey, no wise guy remarks here!) and described how the muscle flap for my 1983 parotidectomy had been fashioned to make my appearance more even. I do have a cavity along the left side of my face and neck, but it's so artfully covered that it's not too visible to casual observers. To me it's still a great big hole in the side of my head. Dr. Gourin answered all our questions, cycling through the slides to make her points, and then returned with us to the refrigerator, um, exam room, to discuss my options.

She recommended that I have surgery with complete dissection of the facial nerve. She fingered the scar which stretches down the side of my neck and said she believed the entire scar needs to go, that something about the way it looks and feels along my neck bothers her and it may be contributing to my problem. She proposed a facelift incision, resection of the entire scar, and repair of the cavity through use of a large chunk of fat from my abdomen. For the first time Nora looked a little envious. Instant tummy tuck - woohoo! Dr. Gourin also proposed that once she dissected the entire facial nerve she irrigate the area through a procedure the name of which I can't recall. It's late, so I'm not going to call Nora and ask her if she remembers.

The doctor told me she does not recommend a nerve graft, but warned that the dissection and irrigation will result in nerve weakness from which it is hoped I will recover. I told her I'd actually experienced the same problem after my total parotidectomy and she found it a hopeful sign that my recovery from that procedure was so complete.

After Nora and I got some proposed surgery dates from the scheduler, Dr. Gourin had us go to her office so we could observe some photos of the procedures she was describing. Getting past the ick factor, these photos were fascinating. The facial nerve branches out like a hand and is easily observed just past the skin. One reason Dr. Gourin proposes the fat insert is to provide some cushioning between skin and nerve. She was astounded that I've been through five surgeries with incisions right along the path of the nerve and never suffered any serious damage, not even when my last two surgeons resected their incisions. She showed some photos (with the eyes and upper parts of faces blocked out for privacy) of people on whom she's done the nerve dissection/fat insertion procedure. Wow! Almost no difference on either side of the face. It's very difficult to see what side the surgery was on. She said a medical journal article will be published soon on the results of this work, so within the next few months this information will be available to everyone.

I asked Dr. Gourin about the harmonic scalpel. She loves this instrument. It seems that when she was enticed away from Georgia by Hopkins (they recruited her), the first thing she asked for was a harmonic scalpel. For those who haven't read my previous posts this is a scalpel which stops bleeding through ultrasound rather than through cauterization or clamping. This allows for a cleaner surgical field, closer work on the nerve, and minimizes inflammation. Moreover, she reports that it cuts (heh) about an hour off the surgery time.

She expects the surgery to last about 5 hours and estimated two days in the hospital unless I was dead set on going home, but that if I insisted on going home I'd need someone capable of assisting me. Naw, I think I can tolerate a couple of days in the hospital where the cat and dog can't find me and crawl all over my abdominal incision while trying to claim me from each other. It looks like we'll be doing this some time in June or July to give me time to arrange for about a two to three week gap in my schedule. Of course, the problem for me is my ability to speak and be understood and appear in public. I'll have to work around it somehow and hope I have a recovery as good as the one I had in 1983.

MRI - Life in the Loud Lane

(Cross-posted to the Parotid Tumor Patients' Forum)

Those who've been following my adventures know that I'm looking at surgery number 6 for recurrent pleomorphic adenomas. Like cockroaches, mold, and acquaintances who "need a place to stay for a few days" after their families kick them out, some parotid tumors never quite go away. Think "Halloween," "Nightmare on Elm Street," and every other cheesy horror movie franchise ever invented.

This evening I went off to the hospital to have my first ever MRI. This comes right on the heels of my first ever FNA, so we're breaking a lot of diagnostic testing territory here. I went in without a worry in the world, convinced that my experiences with CT Scans and weeks of Radiotherapy had prepared me for a claustrophobic experience. Well, I was wrong. The MRI was one of the weirdest and most claustrophobic things I've ever experienced.

First, a note to the claustrophobes out there. There are many areas and hospitals which provide access to open MRIs. Nothing I'm writing here necessarily has to hold true for your own situation. I'm just saying that if you don't like closed-in spaces you should consider inquiring about alternatives to the traditional MRI.

Anyway, I showed up and was ushered to a back room where a very polite technician of some sort (I really don't understand who does what in MRIs, so they're all techs to me right now). He took some personal information and asked me whether I had any kidney problems. Then he told me that the initial series of scans would take about 20 minutes, that I would then be withdrawn from the tube and given a shot, and then would go back in for a few minutes of more scanning, presumably to obtain contrast studies.

I was asked if I had any metals in my body or earrings or pacemakers, etc. Satisfied that the answer was negative the tech told me I could wear the casual business clothes I had on and brought me down a long hallway to another room where two other technicians sat looking at computer screens. One of them got up and showed me into a room where sat the MRI machine. The room was cold and he asked someone to get me a blanket. Then I was asked to get on the "couch" (what is it with these medical types calling hard, sliding benches couches?), and place my head into a frame there. They slid a home-made pillow bolster under my knees.

Once I was on the couch, my head nestled in the cradle provided, the tech placed plugs in my ears and warned me that the machine was very loud. Then a clear, plastic frame was placed over my head and neck. It was open, so I was feeling pretty comfortable until a second clear, plastic mask was placed over my face. It was like being inside a diving helmet; even had lights on either side for illumination. I was lying there, trying to figure out how to keep my arms folded across my rather ample stomach, when I heard the last warning not to move and the couch slid silently into the tube.

Okay, now I know what a torpedo feels like. I needn't have worried about the arm problem. The narrow tube braced my elbows nicely. The ceiling was inches from the clear plastic of the solid mask. For a non-claustrophobic person I found the experience almost breath-takingly tight.

Then began the noise. The noise is truly loud. Imagine a firestation buzzer going off several times, followed by jackhammering, throbbing, pile-driving, and unmuffled engine noise. Loud, loud, loud. There's no particular rhyme or reason to it from the patient's perspective. You hear one noise, then the other, then another, then back to the original noise, then an escalating chorus. The noise was accompanied by a feeling of movement, the couch shaking slightly with the racket. Eventually the noise reached a crescendo which sounded of all things like a headboat I used to get on to go fishing in the early morning hours in the Chesapeake Bay. The only things missing were the chain smoking Vietnamese fishermen, beer swilling folks of all persuasions, and fishing rods. It was like standing at the stern of an old headboat, feeling the throbbing beat of the rough-running engines as they churn toward the Choptank River looking for better fishing grounds.

Periodically the noise would die for a few moments, but a disembodied voice warned me not to move each time. My shoes felt impossibly heavy and uncomfortable. I couldn't figure out whether I should keep my eyes open or shut. By the way, shutting them actually helps quite a bit. When they were open I would focus on two small, discolored patches above me and ponder whether they were stains, or burn marks, or something left by a panicked patient. I never did resolve the question.

After what seemed like a very long time the couch slid out and I was warned not to move as they selected an arm and gave me a shot. Then it was back into the torpedo tube for more ear-splitting merriment. I was told that part lasted about seven minutes.

Once the MRI was over I was asked to wait so they could produce a CD for me to bring to my doctor. This is a great idea, as it allows the patient to bring the CD to however many doctors one wants.

Overall, this was a pretty peculiar experience, but now I have a diagnostic result which can give my doctor a real perspective on the extent of my problem. It was probably worth it, but I wouldn't volunteer to do it often.

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.