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October 31, 2009 1:37 PM

What can I expect with a parotidectomy?

Google is not failing me, but rather overwhelming me. The descriptions mostly seem to be from a clinical perspective and too few from a personal perspective.

I have a 1.7 by 2.6 cm multi-cell benign tumor behind my right mandible close to the back of the lower part of my ear. It is going to come out. I think I have a fairly good grasp of the surgery from the perspective of the surgeon, but am interested in things like personal impact, pain, recovery, unknown issues to watch out for, etc.

If you link to anything particularly gruesome, can you please indicate as much? My girlfriend will probably also be reading this. She's fine with text and drawings, but photos and video are most likely out.

This question about general anesthesia helped a lot. I am one of those people more afraid of "going under" than of the surgery.

Usual disclaimers about not being my doctor apply.

posted by cjorgensen to health & fitness (10 comments total)

This page (warning: a couple of gross photos; just cover the right side of the screen if you don't want to see them) seems to have the full rundown.
posted by Sys Rq at 1:48 PM on October 31, 2009

My boss had this surgery a year ago. It really went fairly smoothly and she did not have a problem with the surgery or the anesthesia, and the recovery was fairly easy. The page that Sys Rq links to seems to pretty accurately describe her experience.

Unfortunately, she did have a bit of facial nerve damage, so that one side of her mouth had decreased movement. At this point, a year out from the surgery, the scar has pretty much faded away and she has recovered most of the muscle movement with her mouth. If you did not know her really really well, you would not notice anything.

Note re the anesthesia, having had several surgeries in my life, one quite long and serious, the anesthesia is really a piece of cake.
posted by gudrun at 2:13 PM on October 31, 2009

I had this surgery almost three years ago. As with everything, your mileage will definitely vary.

Recovery, for me, was very painful. But I was in surgery for about four hours, much longer than the doctor anticipated. The tumor had sent out its little tentacles all over my nerves and the doctor was trying to minimize the long-term damage.

Eating was very difficult, again, because recovery was difficult. I, and my doctor, didn't expect it to be so hard for me to chew, even weeks afterward. I had two surgeries in my life before the parotidectomy, a knee surgery and a c-section. I recovered well and quickly from those. For some reason, this particular surgery was very hard for me.

If you sleep on the side of your face that's going to be operated on, try to train yourself to sleep some other way. I sleep on my left side, and my surgery was on the left side of my face. Sleeping was impossible. So, not only was I having a difficult time recovering, I wasn't sleeping. That wasn't fun.

Once feeling started coming back, I'd get twitches and tics that would last anywhere from a few minutes to hours to days. That's a good thing, though, because it means the nerves are recovering well. I still have a bit of permanent nerve damage (it's kind of a numbness but not really...it's hard to explain) but I really don't notice it anymore. I used to notice it A LOT. But now, not so much. My scar is barely noticeable but my near-ear area is and always will be concave. That used to bother me, cosmetically speaking, but not so much now.

I also recently developed Frey's Syndrome, which I knew was a possibility. I hoped, of course, that it wouldn't happen, but it did. It only occurs when I eat certain foods, and my hair is long so it's really not noticeable. And if I had to choose? I'd take Frey's over the tumor.

My husband has just reminded me that it really, really hurt when I salivated after the surgery. It lasted for quite some time, maybe even a few months but I totally forgot about it! It certainly isn't occurring now. Also, my smile was crooked for a long time as the nerves and muscles tried to remember how to work. I'm back to symmetrical smiling, though, and I think it took a couple months for that.

I hope that helps rather than overwhelms. I see qudrun's response about the boss' surgery and how easy recovery was and how anesthesia was a piece of cake. Just reminds me that we're all different and will have different reactions. I hope you don't have any of the problems I had.

But, it needs to be repeated: I'd have the surgery all over again, even knowing the risks.
posted by cooker girl at 9:17 PM on October 31, 2009

Unfortunately, she did have a bit of facial nerve damage, so that one side of her mouth had decreased movement.

This happened to my mom after that surgery. The lower lip on one side of her mouth sort of curled inward and had limited movement, and it made it look like the "normal" side of her mouth was drooping. It took a few years before it started looking/working normal again. My aunt also had the same surgery and her recovery was quick and uneventful, and her scar was well-hidden behind her ear.
posted by Oriole Adams at 9:25 AM on November 1, 2009 [1 favorite]

There is conflicting information out there on Frey's Syndrome. Some sites claim it happens to most people, some say few. All the sites say it's treatable (or no big deal). I'm not sure how concerned I am with this aspect.

I am going to have trouble sleeping on my left side. I tried it last night and woke up on my right.

I am concerned about foods after, since I like spicy foods and hard foods. I'm going to have to come up with a plan that works for a week or two.

At this point I am scheduled to have the procedure done on a Tuesday and am thinking I'll be returning to work the following Monday.
posted by cjorgensen at 6:59 AM on November 2, 2009

What I forgot to add is that my tumor was about 3 inches long and about 2 inches thick. So clearly, I was under a bit more duress than you're going to be.

Re: Frey's Syndrome. My doctor told me it was a possibility but that the risk was small. Honestly, it doesn't hurt, it only stays red for about 15-20 minutes, and it's so not a big deal. I was just telling you what my experience was. Out of all the risks, that one shouldn't be a big concern for you.

As for foods, I ate a lot of scrambled eggs and milkshakes and mashed potatoes and the like until I could chew again. Just make a list or something of the soft foods you like and make sure you're stocked up before the surgery. And if anyone asks if they can do anything for you, see if they're willing to bring you a meal afterward. It's lovely to have things to eat that you don't have to prepare.

Oh, one more thing: keep up with the pain meds at first. Don't let yourself get in pain before you take your dose.

Good luck, I hope it all goes well, and I hope you're up and about in no time. I'm sure you'll be fine.
posted by cooker girl at 12:27 PM on November 2, 2009 [1 favorite]

2 of the people I work with have had this surgery, one just a couple of months ago. The first one had a complication in that fluid kept accumulating at the site of the surgery and needed to be drained every week or so for a while; that problem went away after a while, though. To this day, a couple of years after the surgery, her ear remains numb. she doesn't seem to think that is a horrible problem, though. The other person had surgery a couple of months ago. She stayed out of work for a week but after coming back felt she could have used a couple of extra days. But her job involves some physical labor such as moving patients and pushing stretchers, so if you have a more sedentary job a week off may be fine. Her ear is numb, too, but it is already getting better. In both cases the scar is almost invisible, if that is a concern for you. All in all things went smoothly for both of them and any problems were fairly minor and self-limited. I see you have already seen my remarks about anesthesia, but if there are any questions let me know. Good luck; I hope everything goes well.
posted by TedW at 11:43 AM on November 3, 2009

Regarding your "going under" fear: My wife had a similar surgery not too long ago, and she mentioned this to the anesthesiologist, who wound up slightly -- slightly -- adjusting her pre-surgery meds to deal with her anxiety. Just communicate with your nurse and your doctors and they'll help you out.

By the time she was getting wheeled into the OR, you could have poured her into a bucket. Good luck!
posted by boo_radley at 7:10 AM on November 10, 2009

Good luck!

I don't have experience with this procedure itself, but I did have a partial thyroidectomy due to a tumour and therefore became passably familar with head and neck surgeries and risks thereof.

The biggest risk: infection. If you spot signs of it, head (pun intended) to the doctor immediately. I did not and ended up with a neck that looked like an inner tube and spent days and days in hospital under massive doses of antibiotics (and then antibiotics to cope with the bugs that the first set of antibiotics allowed to proliferate) to deal with my MRSA infection.

The point I'm making however is all about the location of the surgery. Any surgery can get infected but infections of the head and neck are one step to your brain. You don't want to be slack on this.
posted by Kickstart70 at 4:03 PM on November 12, 2009

Thanks everyone. I went in well prepared for this mentally because of this question. I don't think anything took me by surprise other than the throat pain from the intubation.

All went well. I'm on day 5 of my recovery and got the JP drain tube out already. Stitches come out tomorrow, then it's just waiting for the feeling to come back as far as it will. I have mostly full range of facial expression, but I am told there is some right side weakness (I can't see it, but I'm not trained to tell the difference). My ear is way numb, and probably will never get feeling back in the lobe, but that was understood beforehand.

I could have eaten anything that same night (except the bandage kept me from opening my mouth very far), so soft foods weren't required, but I still stayed with them for a couple of days.

I did have some pain management issues, but 2 days out these were tolerable. I did complain, but think I didn't make it clear (or downplayed how it was feeling).

My face looks pretty good. Some swelling, but no where near what I expected.
posted by cjorgensen at 9:56 AM on November 15, 2009