Saturday, November 08, 2003

Introduction

Well, here goes. This blog is all about my upcoming parotid gland surgery. The very beginning of the story goes back pretty far, so the first posts here will detail how I got to this point. The surgery to remove my tumor is currently scheduled for November 20th. Once I get caught up, I'll try to post often, so the dates line up with the events.
posted by Andy @ 10:13 AM

The Very Beginning - 1988 into 2003

I first noticed a lump behind my jaw just under my left earlobe about 15 years ago. I remember where I was working, so it was somewhere between 1987 and 1990. It was maybe 1 cm long. I asked my doctor about it and he identified it as a cyst. He said it was no big deal and it could be removed, but probably not worth the trouble.

Over the years, I've seen a few different dermatologists for unrelated things and they all confirmed that it was a sebaceous cyst. It has kind of annoyed me over time, but never grew (maybe just a little) and none of the doctors seemed too interested in doing anything about it.

This fall (late August or early September 2003), I went to a new dermatologist, Dr. M, to have her check out some moles. No problems there, and I mentioned to her that I had this cyst. She looked at it and confirmed again that it was a sebaceous cyst. She also said, "Oh, we could just take that right off. It wouldn't be a big deal at all."

Well, it had been bothering me cosmetically for a long time, although I don't think it was too noticeable to other people. So, I thought "why not?" - I'll be rid of that thing once and for all.

So, I scheduled surgery in her office on September 19, 2003.
posted by Andy @ 4:15 PM

Cyst Removal - Sept 19, 2003

The removal of the sebaceous cyst from my neck was fairly uneventful. The incision was about an inch long and five stitches I think. The doctor showed it to my wife - I didn't care to see it or really hear much about it, but she described it as the size of a small clove of garlic.

The only odd thing was when the nurse was working on the bandage, she told the doctor that it felt like there was another lump. Dr. M took a quick look, but dismissed it, saying that she didn't see anything inside and it probably is just puffy from the local anesthetic.

No problems over the next week, other than the annoyance of caring for the incision. Also received word from pathology that it was a sebaceous cyst, and it was entirely removed - the margins were clear.
posted by Andy @ 4:40 PM

The New Lump - Sept 26

I went to get my stitches removed on September 26 without incident. I thought it was odd that there was still a protrusion at the site, but didn't really notice until the next day (Saturday). As I'm trying to shave carefully around the area, I find that there is another lump in almost exactly the same spot and the same size. It's not swollen - it's a hard lump just like before. I am not happy. I go through all of this (basically just for vanity) and I end up with basically the same lump with a scar on top of it! I am really not happy. By Sunday I am furious and need to see the doctor. I can get in to see her late in the day on Monday.
posted by Andy @ 4:47 PM

What Happened? - Sept 29

I am still pretty upset when I get to see the doctor, but try to be calm when she looks at it. She says it looks like there was another cyst that she couldn't see during surgery and it has come back. I remind her that the nurse noticed the lump at the time and she dismissed it. I tell her that this is unacceptable. She says that she'll have to go back in and can use the same incision. I am really furious. I started down this whole path for purely cosmetic reasons and now I need to go through this again! I can't decide if I should do anything - after all, the result of my first "no big deal" surgery resulted in something worse than I started with. I tell her that this result is not acceptable, I don't know what I'm going to do, and I storm out of the office.
posted by Andy @ 4:54 PM

Poked, but not Parotid yet - 10/2

Well, now I upset the doctor too, and she calls my house before I get home. My wife talks to her, but I'm way too upset to deal with it. I'm really busy at work and just don't have the time or patience to do anything right now.

By the end of the week, I'm calmed down a little bit and the doctor says she is around late on Thursday (10/2) if I can make it in so she can check it out some more. Apparently, my reputation precedes me, because when I get to the office, they whisk me right into the exam room without waiting (or an appointment). She looks at it some more and brings in one of the other doctors. They poke around quite a bit and then walk out to huddle.

They both agree that it is not a cyst - it's not part of the skin. It is something else. There is speculation that it may be a lymph node that got inflamed due to the surgery and maybe an antibiotic will take care of it. If not, then I'll have to go see an ENT to figure it out.

So I start a course of Keflex.
posted by Andy @ 5:05 PM

Meet Dr. D! - 10/29

Well, no change after three weeks of antibiotics, so I'm starting to get aggravated again. So we make an appointment to see the ENT on October 29. The doctor is young, but seems very nice. He listens to the story, pokes around a bit, and does a general ENT look-see.

He reviews the pathology report and seems a little skeptical about the previous surgery. Like me, I think he wonders how there could have been two lumps of this size (lima bean?) in basically the same spot without it being really apparent. But the pathology report is clear, and my wife saw the cyst. In any case, he is pretty sure that it is a growth in my Parotid Gland. He says that to be sure, I need a CAT scan. He also says that they can stick a needle in there to be more sure of the type of growth, but it really doesn't help anything since it needs to come out regardless.

He explains the surgery a little bit, but will give me all the details after we know for sure. Since I have time that day, I'll get the CAT scan done right away and come back on Friday to get the diagnosis.
posted by Andy @ 5:19 PM

It's Official - Halloween

As an aside, since I had the CAT scan films, I checked for brain tumors - looks clear to me!

On Halloween, I go back to Dr. D so he can check out the films. Yep, he was right, it's a tumor on my Parotid Gland. He does a good job explaining the surgery. You can check out this site for all kinds of great info, but here are the basics: under general anesthesia, he makes an incision in front of the ear, down around the back a bit, and down the neck. They need a lot of access to be able to work around the facial nerve. Since it is somewhat delicate, the surgery can last 4 hours or so. He thinks the location of mine is pretty straightforward.

I'll be in the hospital overnight and off work for a week. They put in a drain that will be removed the next day, and send me home with a compression bandage - "like an old lady with a toothache". I can take that off the next day.

He does a good job explaining everything. Most of these things are benign (90%) and even malignant tumors are generally removed successfully with no further issues. There are never really any serious (read: fatal) complications during surgery on reasonably healthy people. The only dangerous part involves the facial nerve which runs though the Parotid. If it is damaged, some facial paralysis may occur, and this is not common. There may be some temporary weakness in the face, but it should come back quickly. Another issue is a problem with a "pool" of saliva collecting under the skin. It can be drained, but will usually go away on its own.

Finally, there is the very common side affect where the "dangling" nerves that control saliva production attach themselves to sweat glands in the skin. This can cause a bit of an embarrassing issue (at this point I imagine drooling when the sun hits my face). He says that when you see food and start salivating, your neck or cheek may start sweating - "a good party trick", he says. I tell him it sounds better than the opposite - he laughs.

So I schedule the surgery for November 20 - since the next week is Thanksgiving, work will be slow and I'll have a few more days off. I'll need to get a pre-op physical done - that means I need to find a "regular doctor" - I haven't had much luck with that.

Finally, we really don't have a good understanding of how these two things coexisted or whether there was any cause and effect between them. At this point, I'm going to wait until it's removed and maybe there will be some answers. Maybe not.
posted by Andy @ 5:42 PM

Time for Research - November

Well, now I better figure out what this is all about. Dr. D seemed to explain it all pretty well, and I trust him, but since I was pretty frustrated with myself for not researching the whole sebaceous cyst thing beforehand, I better look into it.

What I found was that anyone who is having or has had this surgery has a great resource in The Patients Forum on Parotid Gland Tumors. What a great site. Not only is there a lot of good information and links to more, the actual Forum is a wonderful place to hear from real people. The support there is great and I'm glad to know I have another support mechanism.

Thanks to Dwight for this site.

I feel very good after reviewing everything, because I feel my doctor did a great job of explaining everything. The information just confirms and adds some additional detail to what he told me. After my successful recovery, I just hope I remember to take the time to keep up with it. Since it helped me, I need to be sure to contribute and help the new people facing this.
posted by Andy @ 5:58 PM

Up to Date

Well, now I'm all up to date. I have an EKG and chest X-ray scheduled next Tuesday morning at the hospital and a physical in the afternoon. I couldn't get into the doctor that I wanted to check out as a primary care physician, so I took an appointment with another doctor in his office. Maybe I'll like him. I haven't had much luck finding a "regular" doctor.

And I decided to build a blog. It's taken me much of the day today to write everything up and put together a layout I like. I'll probably build another page with some photos. I wish I would have taken one before the first surgery though.

I'll try to keep this up, but I don't think anything much will happen until I get closer to the surgery on November 20. I'm not planning on getting too worried about it, but you never know.
posted by Andy @ 6:16 PM

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