Todd’s Final Goodbye: My Parotidectomy Surgery Journey

by The Girl Who Smiled

The Discovery

February 2024 

I was in Honolulu visiting with my family, feeling what seemed like an allergy attack. Plenty of sneezing, itchy eyes, and a runny nose. I don’t know what prompted me to, but I felt the side of my neck right under my ear. I’ve had lymph nodes swell up before when I was sick, and I noticed a lump under my skin. Maybe it wasn’t allergies, and maybe I was sick. Because I wanted to visit my elderly grandparents safely, I took a covid test, which came back positive. The lymph node made sense considering I had covid, so my dad (who is a nurse) and my family urged me to stop feeling it and just wait until it subsides.

Three weeks later I was back in Spokane, completely recovered from covid, but still feeling my lymph node. I named it Todd and reached out to my PCP to have their office check it out. After they examined Todd, the nurse practitioner decided to order an ultrasound to check for any abnormalities. 

Testing

I went in for an ultrasound the next day and read the results:

Corresponding to the palpable area of interest is an enlarged abnormal intraparotid lymph node with abnormal morphology versus parotid gland mass 1.7 x 1.8 x 2.1 cm. Lymph node cortex is thickened and of decreased echogenicity. There is a small possible residual lymph node hilum with mild intrinsic blood flow color Doppler imaging.

The ANPR commented on the test, “The radiologist mentioned an enlarged parotid lymphnode that he recommends is evaluated by ENT and a biopsy. I have placed a referral to ENT to get this set up for you.”

At this point, I was getting nervous. Dr. Google was full of the worst possibilities like lymphoma, leukemia, etc. I researched all the different qualities that were mentioned on my ultrasound and it was not looking good. Meanwhile, my family had been kept in the loop and still told me not to worry. Maybe it will go away on its own. After all, I did have a bout of covid – and it affects everyone differently.

I had ankle surgery scheduled during this time, which I had considered canceling because while the issue was pressing (literally pressing on my joints causing pain), it wasn’t urgent, and this situation seemed so much more potentially dire. I struggled in my anxiety HARD during this month, and I isolated myself from friends, and could hardly go a day without crying and feeling despair.

In March, I finally got in to see an ENT. It took almost a month to see one – I thought with the urgency of a biopsy on the line it would be quicker, but nope! I saw Dr. Emery, a very social canadian man who examined my lymph node without concern. He told me that it is likely a lymph node that can just be monitored for a few months before taking action. As for the biopsy, he mentioned that they are typically inconclusive in that area, so it is up to me whether I would like to do one. In that moment, as I was trying to take in all the data, I walked out of the office not having done the biopsy. When I got home, I had more time to think, google, and talk to family, and the anxiety of just waiting and not knowing if this lymph node carried cancer cells was eating me alive, so I called Dr. Emery to come back in. The next day I went in and had the fine needle biopsy done, so I could either have peace of mine, and/or answers. The results came back more or less inconclusive, and negative:

A: Left parotid tail, fine-needle aspiration (cytospin, cell block): Atypia of undetermined significance (AUS). (see comment) B. Left parotid tail, flow cytometry:
No abnormal B cell population identified. (see flow cytometry results below)

COMMENT:
Part A: This specimen is sparsely cellular, predominantly comprising normal acinar cells. A rare fragment is noted, exhibiting a mixture of epithelioid cells, spindle cells, and myxoid-like materials, which raises suspicion for pleomorphic adenoma. However, due to the very low cellularity, a repeat biopsy is strongly recommended to confirm or exclude this concern definitively. 

In a nutshell, everything was inconclusive and there wasn’t enough data to make any definitive diagnosis, though a new possibility emerged: a pleomorphic adenoma, which is a (mostly) benign parotid gland tumor. in order to find out more, they would need a repeat biopsy and more data.

Regardless of the inconclusive nature of these results, I was a little relieved that no abnormal b cells were found, ruling out those scary cancer diagnoses like leukemia and lymphoma. When I researched pleomorphic adenomas, they didn’t seem deadly or dangerous, even though they need to come out.

We left for our trip to Italy and Greece, with my ankle almost fully healed other than some contact dermatitis or hives. I was still very concerned about my “lymph node” situation, but was able to get out of my head for a few weeks to enjoy our vacation.

Upon returning I went back in to see Dr. Emery, because surprise surprise…my bump was still there and about the same size. When I saw him, Dr. Emery asked if I had gotten the CT scan or MRI, which I noted that he didn’t mention previously. He placed the MRI order and referred me to another doctor who specializes in the parotid area because he suspected that because it hadn’t subsided it was indeed a parotid tumor.

On May 22, I went in for the MRI the next week. When the nurse was preparing me she instructed “when you get in there due to the area being imaged, you won’t be able to swallow, cough, or move.” Great…all I could think about then was how much I had to swallow and cough. I proceeded to swallow every minute of the 30 minute MRI, apologizing to her during the image breaks. Luckily, even with my non-stop swallowing, the images came out clear and were sent to the new doctor.

Dr. Mitchell met with me on May 30th, where he went over the findings of my MRI. He suspected that the mass was indeed a pleomorphic adenoma, most of which are benign (about 80%), located in the deep lobe of my salivary gland. The recommended treatment was a total parotidectomy surgery to remove the entire parotid gland, as these tumors continue to grow slowly, and chances of malignancy rises as it grows and time goes on. Especially when these tumors are in the deep lobe, which is under the main facial nerve branch (vs. superficial lobe, over the nerves), there is more manipulation and dissection of the facial nerve controlling half the face (blinking, smiling, etc.). That being said, he was prepared to talk with me about the risks of complications for this surgery. Among the not-so-fun complications are Frey’s syndrome where a person sweats when they eat, first bite syndrome in which the first bite of food feels uncomfortable and shocking, numbness to the ear long-term (the great auricular nerve), and the most daunting: temporary or permanent facial nerve damage. He even told stories of women who had to come back for skin grafts because they burnt their ears with curling wand or straighteners since it was numb. Aside from the few stories of people with surgical complications, he was very matter-of-fact about the potential risks. His after care summary notes stated:

This really looks most consistent with a primary parotid neoplasm that appears to be within the deep lobe of the parotid gland that would warrant total parotidectomy for definitive treatment we have went over the extent of that surgery including review of anatomic diagrams at great length. Numbness of the ear is highly likely that would be lifelong–females particularly that curled their hair need to be mindful of that to avoid a curling iron type burn long-term. The potential for fluid collection, bleeding, Frey syndrome, cosmetic related issues all reviewed at length. We had a detailed discussion of facial nerve injury risks particularly with neoplasms within the deep lobe of the parotid gland that require additional facial nerve manipulation–mobilization to clear the lesion. She recognizes these risks and issues that accompany parotid surgery and would like to move ahead.

He mentioned that of all the ENT surgeons in town, he is one of the leading surgeons with a special interested in the parotid area. While other surgeons do 3-4 parotidectomies in a year, he does dozens. I asked what my dad taught me to ask: what is your rate of complications when doing these operations. He couldn’t give me a straight answer because as he mentioned, his case load varies, and each case looks so different. Some complicated cases require the nerve to be sacrificed, so he couldn’t guarantee anything (which I understand). Statistically, he said I’d be looking at a 99% chance my nerve would still be intact long-term, and a 1% chance of permanent nerve damage. Cool. 

He also described the procedure to me, with an incision starting up near my ear, going slightly behind the curve of my ear, and down my neck. He would lift my facial flap up to remove the tumor, then close. Recovery would take a few weeks, and it would scar, but my hair would do a good job hiding the incision.

You know when you can just tell when something or someone feels right? I did not get that with Dr. Mitchell. I know for a fact that he is a beloved surgeon in our area, and would likely do all he could to have a good outcome for me, yet the way he described the potential complications and the way he talked about prioritizing tumor removal (which is inherently a positive thing) over saving the facial nerve, made me nervous. I wanted both the tumor out and my facial nerve in tact. I left feeling sick to my stomach, because the chance of losing function and control over half of my face – my eye, my cheeks, my smile – was too much to bear. I love my face, and I use it everyday in my work, with my friends, with Michael. I’m only 26. The idea of looking so different meant my life would be changed forever. 

Searching for My Surgeon

From my ankle surgery journey in February, I learned that there are always options, and surgical approaches vary surgeon to surgeon. We (as in my family and I) took to research to figure out if Dr. Mitchell’s approach would be best for me. After researching the parotidectomy procedure, I learned that tumors in this area are more rare and uncommon, hence why most surgeons only do a few each year and use a more invasive approach involving removing the whole parotid gland (total parotidectomy) and facial nerve dissection.

My dad stumbled across a doctor in LA named Dr. Osborne, who operates on some of the most complex cases using a micro-incision, claiming to have a 0% complication rate. This doctor is renowned for his surgery skills, and is even the star of his own Amazon series on this surgery called OHNI Case Files. Instead of doing 3-4 parotid surgeries per year, his team performs hundreds. It seemed like a great option so I reached out to them to schedule a consultation (costing $200-250). After learning they don’t take my insurance and learning that out of pocket could cost up to $30/40k, I was distraught. I care so much about my facial nerves, yet spending that kind of money on a surgery when I have perfectly good health insurance seemed absurd. Michael was the most supportive, and was even willing to spend the money to get me the best care because he wants me to be healthy, beautiful, and have the best outcome. I kept searching…

I found Dr. Larian of the Center for Advanced Parotid Surgery who is also located in LA. When I submitted the form it seemed hopeful because they ask about insurance, but when I heard back I learned that the situation is quite similar to Osborne. No insurance taken, though I could try and submit a claim myself. Estimation was $20-45k While they both seemed like talented surgeons, I could not justify the cost. 

I researched some of the country’s best institutions and found a few other doctors that seemed experienced, did the mini-incision, and had good reviews. They all required traveling, but I was willing for the right doctor. I got referrals from my primary care doctor, who eventually cut me off from requesting more referrals, for Dr. Janus at Mayo Clinic in Jacksonville, Dr. Agrawal at UChicago Medicine, and Dr. Futran from University of Washington. I heard back from them one by one:

• Dr. Janus is accepting new patients but doesn’t do virtual consults. I’d have to just book the surgery, fly in, and do it.
• I had a virtual appointment scheduled Dr. Agrawal but when I arrived found out it was not only in a different time zone (so I missed it) but he also doesn’t do out of state appointments. 
• Dr. Futran was available to schedule in-person (no virtual appointments) but his approach just seemed so similar to Dr. Mitchell, so the benefits of traveling to see him didn’t seem worth it. 

Breakdown to Breakthrough

One by one the doors to those surgeons were shut, or the surgery approach not ideal. I remember one day sitting on the couch after having chatted again with local surgeon Dr. Mitchell about complications. He wasn’t very reassuring about the facial nerve issue, but did his best to give me statistics and facts. That day I remember feeling so distraught and overwhelmed. I had joined a facebook and forum called Parotid People, for those who are in a similar boat to me. The facebook group was filled with posts from folks who were doing testing, going in for surgery, struggling with complications, etc. There were photos with lots of intense and painful-looking incisions, faces with facial nerve damage, posts that mention cancer and treatment, and mostly people seeking help from others who understand. It sent me into a deep pit of despair as I looked at the long and painful journey ahead of me through the experiences of these people. I remember sobbing that day (and many other days), but this one felt different. It felt like despair and helplessness. I prayed that God would help me find the right surgeon, or help me feel confident in Dr. Mitchell doing the surgery. That night in a last ditch effort I searched for Dr. Osborne in the parotid people facebook group. I saw a few posts from others seeking insight as to whether the $40,000 bill was worth it. I saw a few mixed reviews, but noticed that many members mentioned another surgeon named Dr. Eric Moore. I started reading through these comments, seeing dozens of mentions and nothing but positive experiences and reviews, and at the bottom of the post the founder of the Facebook group tagged about 20 additional individuals who had done surgery with Dr. Moore. Who is this Dr. Moore?

I immediately researched Dr. Moore, of the Rochester Mayo clinic and did more research in the Facebook group. WOW. He checked all the boxes. Mini-incision, very little, if any compilations, does hundreds of parotidectomy surgeries each year with a team that has worked with him for 20+ years, and so so SO many grateful people sharing their stories with him. He was the first and only surgeon that had been consistently rated 5.0 stars with hundreds of reviews on every website.

The next morning I called Mayo Clinic and switched my surgical request to Dr. Moore, praying that he would take my case. It was a perfect transition, since I was already in Mayo Clinic’s system from my previous request for Dr. Janus. WIthin a week I was meeting with him and his PA, Eliot (Eli) Martian) and scheduled my surgery for September (after my best friend’s wedding). They seemed incredible, so knowledgeable and experienced, and I immediately felt that I was in good hands. When they described complications, they never mentioned permanent nerve damage. They talked about my tumor being a deep lobe tumor (vs. superficial) sitting under my nerves that they’d have to manipulate, which could cause temporary weakness for 6-10 weeks, but nothing should be permanent. They mentioned doing a partial parotidectomy in the deep lobe, rather than taking out my entire salivary gland. They addressed my deepest fears and I knew they were worth traveling to. To top it off, Mayo Clinic accepts our insurance!

I posted in the Facebook group one morning about my appointment and someone named Deb Stephenson reached out to me. She is from Colorado and traveled to have her parotidectomy with Dr. Moore the week before. She offered to share her experience with me, so we chatted on the phone for a while. Her situation seemed more dire than mine, with thoughts that her multiple tumors were malignant. She flew out to have her total parotidectomy procedure with Dr. Moore and found out that the tumors were benign. She shared pictures with me from the day of and after the surgery, and shared how incredible Dr. Moore and his team is. She gave me reassurance that the decision I made was the best one, and she gave me tips for traveling, preparing, packing, and healing from the procedure. Leading up to the surgery she kept me updated on her progress and encouraged me along the way. One thing I vividly recall from our conversation is that she felt so good after the surgery that she and her husband had dinner at Olive Garden where she had a big bowl of spaghetti!

My mind was made, and I felt good about my decision to move forward with Dr. Moore, so I proceeded to make travel arrangements. WOW, God is so good. Our trip was covered using an extra companion ticket that my dad needed to get rid of, the hotel and the rental car was paid for using our credit card points (super sweet deal), AND we even got two first class tickets going home. All in all, the trip was $700ish out of our pockets! What a blessing!

Traveling to Rochester, MN for Surgery

Fast forward to September 2. We hopped on a plane for 2.5 hours and drove an hour to Rochester, Minnesota. We got to explore the sweet little downtown that surrounds the Mayo Clinic buildings, and honestly, we made a little vacation out of it. I met with Eli and Dr. Moore on Tuesday, September 3 to talk through the plan, and on September 4th (the day I’m writing this) at 5:30am, I was checked into St. Mary’s Hospital at Mayo Clinic. At 7:30 I was brought into the OR by Eli and was comforted to sleep by three amazing women (the anesthesiologist, an anesthesiology APRN, and a surgical nurse). I woke up in the recovery room, a bit groggy from the deep sleep. I noticed that I was able to talk a little and even smile. I was given juice and graham crackers, which at the time were way to crunchy for me. The pain was intense, so I took a Tramadol (opioid) which helped a little. Michael was called up, and the nurse (Kayla I think her name was) let me nap a little before giving us care instructions. 

While I was in recovery after the surgery, the PA informed Michael that even though the MRI made it look like the tumor was in the deep lobe, it was actually sitting in the superficial lobe slightly tucked under my jaw. This meant they didn’t have to move the nerves or parotid gland nearly as much as originally thought as the tumor sat right on top of everything. Frozen pathology results were clear of cancer: 

Todd was a benign tumor, a pleomorphic adenoma!!!

Now, as I sit here recalling the most miraculous turn of events, I am feeling good. There is a little pain, though completely manageable with over the counter pain meds. I ate yogurt and a few bites of Michael’s pizza. In honor of my friend Deb, we are going to Olive Garden for some soup and pasta tonight.

My Miracle Worker

I have to thank God for leading me to this team, AND for performing what I feel is a miracle. Last night as I prayed about the surgery, I was very specific. I prayed that God would not only be with the surgeons there, but that the tumor would be in my superficial lobe (I knew it was a possibility, but unlikely) and would be easily removed from my nerves with little manipulation. I can smile. I can smile big!