Parotidectomy - Moving On

I’ve seen a martial arts move where the martial artist drops to the floor, swings his legs against the back of the opponent’s heels, and the unsuspecting opponent topples to the floor, surprised, baffled, aching.

That’s the metaphor that works best for me with regard to having a parotidectomy, or what ended up technically being “excision of a parotid mass.”  The morning after surgery’s jubilation at being alive and being able to smile, say, “Eeeee,” and raise my eyebrows was followed by getting hit hard, then harder.  I was floored.

Before the surgery, I Googled far and wide, found Poked and Parotid - Journal of My Parotid Tumor by Andy Little the most valuable chronicle of the general nature of what would happen before, during, and after a parotidectomy, and felt well-prepared.

For those who might find this post when searching for answers of their own about parotid surgery, here are some insights, observations and advice I would share with myself knowing now what I didn’t know then.  (And as of February 2010, when Andy Little writes, "Please feel free to write any time," he means it.  I know, because I wrote him.  And, with great kindness and comfort, he wrote back. Advice to self: Write Andy.)

Observation:  Pre-surgery fasting became tolerable after 5 hours, but I had to quit working because I couldn’t concentrate any more.  After that point, seeing food or thinking of food didn’t make me want to eat it because I had little energy for appetite.  Swishing water in my mouth every hour or so, then spitting it out, helped with the thirst, as did keeping my lips moist with cherry-flavored Chapstick, although alternating with petroleum jelly as lip gloss worked well, too.  By the time I went into surgery, I had been without food or water for 10 hours.  8 hours was required.

Insight:  Andy’s parotidectomy was in 2003.  Whether by local norm or by insurance requirements, what was once a surgery which resulted in hospitalization was for me in 2010 out-patient.  I got into my sister’s car, having had no food or water for 12+ hours except for a few juice cartons in the last half hour, about an hour after surgery, with a multi-inch, multi-stitched incision in my face and a drain in my neck leading to an open hole leaking saliva and blood.  I profoundly underestimated the shock and impact of this event on my system.

Advice to self:  Stock up on nutritious soft food for many meals for many days.  As warned, the discomfort in my face precluded opening my jaw wide or chewing, so soft food in small amounts was all I could tolerate.  Although I love Campbell’s chicken and rice soup, one can slowly eaten in small portions over many hours left me as hungry when I finished as I started.  I ended up subsisting on French fries and vanilla ice cream which provided comforting bulk, but not tissue-rebuilding nutrition.  I wish I had had two six-packs - one of Ensure and one of V-8.

Advice to self:  Don’t stay alone on the second and third days.  I train for sprint triathlons and write an advice column.  I appear physically and mentally fit.  We all thought I would be fine alone.  Alone, I lost all my strength and resilience of body, heart and mind.  I spilled like milk and am still mopping up.  Having a person present in the house, even a hired nurse, would have served as a container. 

Insight:  A hard cry eases the spirit, strains facial stitches, and requires an extra pain pill afterwards.  A thoughtful cost-to-benefit analysis would probably have been in order but I wasn’t thinking at the time.

Advice to self:  Follow directions.  A nurse friend told me that most people make the mistake of taking pain meds once they feel pain, rather than starting the meds before the pain starts.  Heeding her advice, I took the pain meds prescribed by my physician ASAP and experienced that state that some find of addictive relief - separation of self from pain.  I may have had pain but I didn’t know it enough to suffer from it.  I thought I was starting to feel fine, so I skipped a dose.  Two words:  Stupid hubris.  I returned to taking the meds as prescribed but never regained the full relief I had had while doing what I was told.

Insight:  Psychological stuff comes up.  Plenty came up before the surgery, and every moment of working through it strengthened me.  About this new stuff, some I’m working through, some calls for a struggle for which I don’t have much energy. 

Given Andy’s thorough record of parotid surgery, I only wrote one journal entry, 48 hours after surgery.  While it explains more of the details of my own case and story, it’s definitely written from the spilled state of despair.

When I was searching far and wide for information on paroditectomy, I wanted to see.  If you want to see, here's what I've got.

Pre-Parotidectomy Images

Post-Parotid Surgery with Bandages (The last photo is a self-portrait from the third day. Evidence for "Don't stay home alone.")

If you have a weak stomach, please do not click:  Parotidectomy Incision with Drain and without Drain

Parotid Surgery Incision (Less graphic and drain opening is covered by a bandage.)

Parotid Surgery Scar (begun 3/5/10 with photographs of the progression of the scar's appearance)

Parotid Surgery Scar after six months (added 8/22/10)

Parotid Surgery Scar after one year (added 3/28/11)

Here is what I wrote:

Scar - 2/4/10
Did It Just Begin - 2/7/10
Results of Longitudinal Research Studies - 2/12/10
Parotidectomy - Then and Now - 2/15/10
Journal Entry - 2/17/10

Andy Little kindly gave me permission to write about finding his site from both personal and business points of view:

A Google Real-Time Search Story - LeBron James Had a Parotidectomy, Too - 2/11/10
Social Media Works to Resurrect Static, Legacy Sites from Internet Obscurity - 2/14/10

Surgery was late Monday afternoon; this is Friday morning.  I assume I’ll have more insights.  That's it for now.  I'm ready to move on.  I'm tired.

The hardest part is the altered state of the feeling in my face.  It’s supposed to be short-term, back to normal in under a year.  Before surgery, I very carefully placed the right side of my face against my husband’s whiskered chin, against my cat’s soft side, against his cat’s tough little head.  I can’t feel them anymore.

***

Update 3/5/10:  I added these pictures, Parotid Surgery Scar, and am continuing to move on.

***

Update 4/10/10:  For 5 weeks, 6 days, and 23 hours, I felt as if I had a throbbing, aching hard-boiled egg protruding from beneath my ear, sewed to bursting just under the skin.  After showers, the gathered place at the top of the wound stung as if it were still open.  During the fifth week, so distressed and confused by the continued pain and the increased swelling and increasing hardness of the wound, I went to the after-hours, wait-in-line care facility.  The physician was satisfied with the wound's appearance - no heat, no redness, no red lines, no indication of infection.  He could not explain the pain.  Still so concerned and my surgeon out of town, his partner saw me as the last patient on Monday, March 29, exactly six weeks from the day of the surgery. 

My surgeon's partner was very reassuring and informed me that neck surgery is difficult and tricky and, for some, the wound can swell and harden.  I fell in the latter category.  He encouraged me to massage the wound.  I rubbed it gently.  "Like this?" I asked.  "No," he said, "like this," and it felt as if he pulled the "egg" out from the side of my neck and rubbed it briskly between his fingers.

I massaged the wound for maybe two days or so, then thought about it rarely.  Six weeks is considered the magic number for recovery from surgery and, for me, it took every day of six weeks for me not to have the pain and size of the wound a constant presence.

I received a very kind email out of the blue from someone who had had the surgery, who sent me a picture of their beautifully healed scar, who shared that they, too, had had an inordinately, surprisingly difficult time with the surgery.  They sent the picture to assure me that it did get better and added, "Hang in there." 

This post is long gone and buried in this blog so traffic to it comes primarily from people seeking information about, and solace for, their own parotid surgeries.  So to you, my fellow parotid surgery "experiencers," I share what was true for me:  1) I thought I was alone and I am not.  2) While I appreciate that Tolstoy was a man but captured a woman's experience in Anna Karenina and I think others can empathize with those who've have parotid surgery, I think it has its quirks that only someone else who's been there can truly understand. 3) It took me a full six weeks to be released from strong and constant pain.  The pain is occasional and annoying now, not ever-present.  I feel like I have my life back.

Comments

[Anne Giles Clelland]

I will tell you that I’m having a harder time than I expected to. While the mechanical part of the surgery is going very well - less invasive surgery than originally planned, shorter scar, no infection, stitches out tomorrow - I feel weary from the soreness, the numbness, the lack of energy, the restricted movement in my jaw and neck, the restriction on movement at all until Saturday. Worse seems to be how upset I’ve been, which really caught me by surprise. I’ve had a few insights about why, but I’m too tired to have more for now. Plenty would tell me I should feel grateful for it not being worse, for not being in Haiti without a limb. The way that seems to express it best is that the whole experience just broke my heart. I’m trained to go through these things and to transform them and I will. Three months from now, I’ll be doing a sprint triathlon at Clemson and this will all be part of “This too shall pass.” While it’s passing, wow…

[Anne Giles Clelland]

Stitches removed yesterday, one week after surgery, pathology report - benign! Made my first appearance in public sans hat and bandage at Presidents' Council yesterday and was greeted with great compassion and great support. Then we moved on to business as if surgery and a scar were non-issues. Although not at that point yet, I feel myself heading that way. I learned of three people right here who have had parotid surgery and they're walking, talking, laughing and working, so their willingness to tell me their stories helped me with mine.

I'll continue to post pictures as they matter, and then, eventually, they won't matter and, to quote Mary Poppins, "Spit, spot." We'll be done.

[Vanessa Kraft]

Thank you for the wonderful blog. I will be having this surgery performed in Oct. 2010. Being an RN, I find that I need to be prepared more than most despite having found a wonderful ENT/Plastic surgeon who will be performing the procedure. I scar horribly and am wondering how hideous this will be. Kudos to you for your courage to post your journey!

[Anne Giles Clelland]

Thank you so much for your kind comment, Vanessa!

I very much appreciate the "need to know." I think I needed to know about the surgery, but on how I was going to look afterwards was what I spent most of my search time. I remember a Star Trek episode where very disfigured humans are made to appear whole by the minds of the planet's inhabitants. Captain Kirk gives them the option to return with him. They stay where they are whole.

I, too, have a scar issue and found out afterwards that my ENT was also a plastic surgeon! Five months post-op, the scar on my neck is small and flat. The part of the incision behind my ear is rumpled and can still get sore. "Wait a year," my surgeon said. Okay!

I was unable to comfort myself with this wisdom for many weeks - "This too shall pass" - because the experience seemed like it never would, but it did. I can't see the scar when I look in the mirror to dress. I have to use other mirrors and angle them just right to view it. I did this incessantly at first and can't remember the last time I looked. I put a sticky note in my datebook to remind myself to get a six-month post-op photo for the blog. Otherwise, I bet I would forget. That's a good sign.

Very, very best wishes to you, Vanessa. Thank you for your courage in sharing your story. It helps all of us.

[Joe]

Anne,

Wow...what can I say, thank you so much for your blog. You deserve an award for posting your experience. I went to the doctor (ENT) today after being referred by my primary care physician. I am scheduled to taje a CT scan of the Parotid Mass tomorrow afternoon. I hope I don't have to go through surgery, but if I do, I will take inspiration from you. Have any recent photos? I'm curious to see how the scar now look.

[Anne Giles Clelland]

Thank you so much for your kind words, Joe.

Just a few days until 6 months post-surgery. I have it marked in my calendar for a new photo and will be glad to share.

I did ask my surgeon at my last check-up about plastic surgery for the scar and he urged me to wait a year before considering it. That makes sense to me because my scar has changed significantly in 6 months - for the better! - and apparently the scar takes awhile to heal. Okay. Will do.

With regard to physical activity, I am back to participating in sprint triathlons. My neck was stiff for awhile and I could only breathe on one side while swimming, but now I can breathe on both sides without thinking about it. The scar still stings a tad and a patch of skin on my jaw is still numb, but that doesn't keep me from doing everything I did before. I hope that's of some comfort.

Joe, thank you for your comment and very best wishes for health to you!

[Joe]

Anne,

Just a little update on my end. I did have the cat scan and the ENT doc said after viewing the scan that I did in fact have a mass, but it was an undetermined type. So, last week, he referred me to have a fine needle aspiration. I did this last week. The pathologist basically stuck a needle in my neck on the mass to collect a sample of the mass this way he/she could see it under a microscope. Right after the needle go stuck in my neck, I only had to wait 20 minutes at the Pathologist to hear the results.

He came in the room and said "it's bening; it's not cancerous or anything". The needle shot was so painful but the news made me forget all about it. Next week, I plan to visit my ENT doctor to go over this new result. Because even though I'm no longer on antibiotic, the growth under my ear is still there -- it's not as big and painful as it was when I first had it though. SO, it's weird that I still have a lump, even though it's smaller. The pathologist said that he believes it's my salivary gland causing it and to continue monitoring it. Put warm compress, blah blah blah, etc. I'm still worried because I still have a lump. I was thinking about having my ENT referred me to another place so I can get a 2nd opinion on the mass. What do you think? Why do I still have the bump...it is at least 50% smaller than the first time. The Pathologist said "if it was cancerous, it wouldn't have gone down at all; in fact, it would have either grown or stayed the same size. The fact that's it's gone down considerably makes me know it's not cancerous, etc". That's what he said. I'm still worried though. Thanks for the best wishes.

[Anne Giles Clelland]

Thanks for the update from you, Joe.

And here are the photos I promised:
http://annegilesclelland.typepad.com/blog/parotid-surgery-scar-at-six-months.html

I appreciate you asking me what I think about your situation. I am a case study of one, not a medical professional, so I can't advise you at all about medicine. I can only share my story. When I hear you're still worried, I can relate. Health challenges bring up worry! What to do with worry is a challenge in itself. No matter how many medical opinions I got, no matter how many reassurances I received from friends and family, I still felt worried. What I realized - and this may or may not be true for you - is that I could not control the outcome of my own situation. I wanted to "make" everything all right and know for sure that everything was and forever would be all right. Sigh.

And whether it's parotid surgery, or whether my cat will stay home or venture into the street, or where my nephew who has joined the military will be stationed - all is beyond my control. A book title - "Comfortable with Uncertainty" - helps me.

And asking myself what will help me be more comfortable with uncertainty helps me take action to address worry. Sometimes the answer is a second opinion, a conversation with a good friend, or a run in the rain.

You still have my best wishes, Joe. Thank you so much for sharing your story.

[Joe]

You ROCK. Thanks. Wow, I can't even see the mark on the pictures. I wouldn't even waste the money on plastic surgery unless you have it to spend. Did you just win the lotto? LOL. Best wishes in whatever you decide. I will give you an update next week after visiting the doc.

[Anne Giles Clelland]

Thanks, Joe! :) Take care!

[Joe]

Anne,

Okay, here's the latest. I have not seen the lump since the last time I had it tested and found out it was bening. I will still monitor it just to make sure. I am still battling a bad cough/phlem, etc. Not sure if it has something to do with that.

[Anne Giles Clelland]

Joe, it sounds like you're monitoring your health and seeking help from professionals. That was my course of action, too. Thanks for sharing your update and take care!

[Joe]

Everything is still good on my end, thank God. I wanted to say Happy Holidays to you and your family.

[Anne Giles Clelland]

So glad to hear that, Joe! All is well here, too, thank you for the good wishes, and happy holidays to you and your family as well!

[barb bryant]

had parotid surgery 6 days ago. The anesthesiologists had difficulty intubating me...it took 3 tries and a camera. The jaw pain is getting worse every day. Is this what most of you have experienced?? I thought I'd be fairly back to normal by now. Discouraging!!

[Anne Giles Clelland]

Greetings, Barb. I'm so sorry to hear about your pain. I got very interesting guidance recently: We were taught to "get over it," then we were taught that it was enlightened to "get through it." This guide said, "We never get over it or through it. There's no place to reach, no 'back to normal,' no 'other side.' We incorporate it. It goes with us."

I related immediately to this because I have found it true about my parotid surgery and scar. The experience, the healing wound, the scar - they all go with me now.

I was in constant contact with medical professionals during the first weeks after my surgery. I found the pain surprising and baffling and knew that I was not an expert and needed to consult experts for information. I so hope you will do the same.

Thank you so much for writing. I wish you the very best.

[barb bryant]

Thankyou so much for writing back so quickly. So appreciate your blog. Your words are excellent wisdom and advice. Thankyou!! Helps knowing others have had the same experience.

[Anne Giles Clelland]

I feel the same way, Barb. Talking about it with you helps me, too. And Andy Little was very kind to me when I was about to, and just had, the surgery, so he may be someone to contact, too:

http://www.pokedandparotid.com

Again, very best wishes to you!

[Joe]

Best wishes to you Barb.

[Christina]

Hello Anne! I'm grateful to have found your blog! It's a great thing that you are moved on, and decided to share your experience with us! I'm going in for surgery in 5 days. What pain meds did you take that you found the most helpful? Also, when they took the drain out, did you feel it? Did it hurt? I feel like thats the most disgusting part of this whole mess! A tube sticking out of your neck, gross!!! And one final question, when did your energy return to what it was pre-op? Thanks for your time!! It is immensely appreciated!

[Anne Giles Clelland]

Greetings, Christina. I will try to answer your questions the best I can.

I took the pain meds prescribed by my physician but I don’t remember which ones because I no longer take them. As I wrote, I took them as prescribed, in anticipation of pain rather than in response to pain. I still am still very glad I followed those directions.

I agree and, too, thought the idea of the drain was creepy. Was it a sort of sliding feeling when it was removed? Not painful at all and not in any way approaching the drama I expected!

My energy, eh, didn’t return as fast as I had hoped. I think the impact of the surgery surprised me. I sent a version of this to someone else but it may explain why:

I saw a play when I was a child and I remember a disfiguring spell was cast on the princess and she wailed, "My beauty!" and crumpled to the floor. Frankly, that's how I felt after the surgery. I've read elsewhere, but haven't documented it, that parotid surgery is quirky, perhaps facial surgery the same, and it has a psychological impact unlike, say, an incision to an arm or leg. I felt un-beautiful. I had being going regularly to a massage therapist and cut off visits with her, feeling some kind of shame about my appearance. I've learned since, too, that the anesthesia has a psychological impact that can last awhile. Even though the anesthesia wore off, the beliefs that came during it hung around.

If I could do it over again, I would email ten of my friends - even my acquaintances to make up ten - and tell them that I was getting ready to have standard, out-patient surgery that might have a significant psychological impact and would they please sign up for shifts to visit me or call me the first ten days, and then to call me or be available for me to call them every day for the remainder of six weeks. If they could do that, every time I would have felt pain or fear or doubt, they would have been there for me. Then the crisis would be over, I would wonder what all the fuss had been about, and we would all get on with our lives.

In fact, feel free to copy and paste that into an email if you like.

If you don't have that many friends, the old wisdom applies: This, too, shall pass. I wear make-up and jewelry and scarves again and can't remember the last time I thought about the surgery. My scar is a little rumpled under my right ear and I might have that repaired, but my surgeon said to wait a year and I may be so on-with-my-life that I'm indifferent to having a cosmetic repair.

The bottom line for me is that it took longer than one might wish to heal, it would have been faster with support, but either way, it passes and becomes almost a non-event.

I wish you the very best!

[Christina Carr]

Thank you very much for your words of wisdom, it means a lot!!!

[Elizabeth]

Dear Anne,

So happy to have found your blog! I had parotid surgery almost 3 weeks ago. I have been searching the internet for information about the recovery since I have been getting increasingly concerned as to why the area in front of my ear is hard and more swollen than before the surgery. I had braced myself for the worst, but thankfully all went well. The tumor was benign, I can blink, smile and wrinkle my nose, and so far no Frey's syndrome. I can even open my mouth wider now to chew solids. I prepared myself mentally for the major risks, however, I had not really prepared myself well for the little things, the numbness and feeling like Mrs. Potato Head. My part of the ear near the surgical site feels like an attachment to my head, not part of me anymore. Info I read online spoke of the likelihood of an indentation where the tumor was removed. I have been worrying that the area is hard and swollen. Even my ear lobe feels and looks thicker than it used to be. It's still a stretch to look over my left shoulder. And now, for the last couple of days, I have been experiencing a shooting sensation of pain on the side of the surgery when I take the first bite of food at a meal. It is only for a second or two, but I need to brace myself for it.

When my doctor took the stitches out, he thought everything looked fine. He told me to come back in 3 months. He told me very often people expect the face to heal faster with major surgery, but it needs time like other parts of the body. I guess I'm impatient or a worrywart. The other day I called my doctor's office to obtain some sort of reassurance that my recovery was "normal". The nurse told me to give it a little more time, try warm compresses, and feel free to call back in 2-3 weeks if the area doesn't improve.

I have been comforted by your blog. Now I know that I'm not the only one in the world who had this surgery and experienced fear and doubt and didnt' bounce back after just a week. My deceased mother also used to say, "This, too, shall pass." Every day I tell myself that, and then think of those fighting life-threatening battles, and I feel selfish. But still, when I go to bed at night, just when my head hits the pillow, I wonder if I will ever not be Mrs. Potato Head, or at least not care that I am.

[Anne Giles Clelland]

Thank you so much for your comment, Elizabeth! Reading it is a paradox of joy and sorrow – the joy of recognition and connection – yes, yes, it was like that for me, too! – and the sorrow of the pain and change – oh, my, I’m reliving how hard that was…

After the stitches were removed, I was appalled by my doctor’s request to come back for another appointment in months, not days, even hours! From a clinical point of view, more than a year after surgery, I see, of course, that makes sense. The wound healed. The symptoms abated. What I couldn’t do post-surgery, I can do now, namely turn my head while driving or swimming and not be reminded sharply or achingly that I had the surgery.

From a personal point of view, though, coping with the pain, disfigurement, and worry were significant. I returned to my doctor a few times prior to that many-months-out scheduled appointment for reassurance. I had never had the surgery before! I didn’t know what to expect. At essence, again looking back, I didn’t know if I was okay or not. I don’t know whether or not things were starting to go very, very badly.

I had a root canal recently, my first, and was very thoughtful during the long procedure about whether or not this would be a trauma to the face, body and psyche similar to the one I experienced during my parotid surgery. Yep. Clinically, the procedure went beautifully. Personally, it was painful and confusing and I did return once for reassurance.

But, oddly enough, I had learned from the parotid thing to be my own support group for the root canal. I was aware of the possibilities for challenges, I took the pain meds early rather than too late, I sought medical care when I thought I needed it, and I didn’t push myself to be better or other than I was. When was that root canal? Three weeks ago? Ache from surgery gone, as is shooting pain from biting down on scrambled egg. I continue to be amazed by how the human body can heal from a wound and how hard that wound is on the human heart.

Thanks again, Elizabeth. You helped me, too.

P.S. "This too shall pass" has truly never been much comfort to me, either. :)

[Joe]

Have a great week Anne.