When I was preparing for surgery, I really appreciated reading about other people's experiences with parotid tumors, so I'm putting this story out there in case it can help someone else!
Sometime in 2014, I noticed a lump behind my left ear. I figured it was a swollen lymph node, and since I was sick at the time with bronchitis, I wasn't concerned about it. I had gone to the doctor about my illness and she had felt my lymph nodes and didn't mention it. Several months went by and the lump was still palpable. It started to worry me a little, so I made an appointment to get it checked out. My doctor said it was indeed a lymph node and that sometimes swollen nodes don't go down right away after an illness. She looked in my ears and said I had some fluid in my ears, so that could be the cause. She assured me that as long as it didn't remain swollen for years, it was nothing to worry about.
Well, it remained swollen for years. I tried to get Jared to feel it over the years and he always said there was nothing there. I could very clearly feel it, but he couldn't. Then, one day in early 2017, I realized with a start that I could SEE it in the mirror. It had been growing slowly and I had a habit of touching it constantly, so it was difficult for me to notice the gradual growth. But once I realized I could see the lump on my face, I realized it had definitely gotten bigger. The location even seemed to change. Originally, I had only noticed a small lump in the little divot behind my earlobe. But as the lump grew, it wrapped around both sides of my earlobe and was visible from the front. At this point, I had Jared feel it again and he finally could feel it. He was sure it was just a cyst or something and offered to pop it with a needle for me. Not at all interested in his offer, I made another appointment, this time with my new family doctor.
My new doctor felt the lump and confirmed that it was indeed a lymph node and it was "huge." She ordered bloodwork and asked me several questions ("have you been fatigued lately?" "have you lost weight unintentionally?" "do you wake up with night sweats?"). I knew what she was getting at: she was ruling out lymphoma. This had been my lingering fear for years, and it would come into my mind every time I habitually felt behind my ear, but I'd always push the silly thought away. But to be sitting in the doctor's office and answering questions related to cancer was very scary. I remember the doctor listening to my heartbeat and asking me if I was feeling nervous and I lied and said no.
I got a call later that week that my bloodwork was all normal. As far as my doctor was concerned, there was nothing to worry about. But I did not feel at all assured by that. It was not normal to have a giant lymph node for 3 years. My doctor said she could order a CT scan if I'd like. I agreed and scheduled it as soon as possible, but it was a week away. I had the CT scan, which was a quick and easy procedure. The contrast injected in my veins was very strange - it gave me a metallic taste in my mouth and (luckily, the tech warned me about this) made me feel like I was peeing my pants.
When my doctor got the results, she called to tell me that the CT showed that my lymph node was indeed swollen and that my sinuses were filled with fluid, so I ought to see an ENT about my sinus problems, as the lymph node was likely related. I told her this made no sense. I did have a sinus infection at the time, but it was not a chronic problem and the swollen lymph node predated the infection by over 3 years. It is so frustrating when doctors don't listen!
I knew I wasn't getting anywhere with my current doctor, so I did make an appointment with an ENT...a month away. The waiting was driving me crazy. I called around and finally found another ENT with a shorter wait. When my appointment day arrived, she reviewed my scan, felt the lump, and told me it could be a swollen lymph node, but it could also be a tumor in my parotid gland. Just a day or two before this appointment, I had come across parotid tumors in one of my lump-behind-ear google searches. I had watched a video about a woman who had a parotid tumor that grew to the size of a softball and was so complicated, she could not find a doctor willing to perform surgery.
The ENT scheduled me for a CT guided biopsy. Another CT, another $1500. I wish I had gone straight to the ENT and skipped that first CT!
The procedure was supposed to be a fine needle biopsy and was not supposed to hurt, after the local anesthetic. The radiologist performing the procedure did give me the choice to have more anesthesia (conscious sedation), but he and I both agreed it was probably not necessary. The CT was performed and then the doctor used ultrasound to guide the needle into the tumor.
But he wasn't able to aspirate anything. I didn't know this at the time, but I discovered later that he then switched to a core needle, which is a much thicker needle. Basically, a large, hollow needle is inserted into the mass, and when the doctor pulls the trigger on the spring loaded gun, a serrated needle inside the core of the larger needle shoots down into the mass and pulls out tissue. It was exactly as painful as it sounds. The worst was the shock of it...it was so sudden, it made me jerk. And it just kept coming. I think the doctor took 6 or 7 samples and I never knew when the jolt was coming! It felt like the local anesthetic wasn't doing anything to numb the pain, but apparently it was, because as it wore off on the drive home, the pain became worse and worse. (I was told to bring a driver, so Jared was there, thank goodness!) That was first time since Birdie's birth that I cried from pain. It was a deep pain, like the pain of a really bad earache. I couldn't eat anything solid for 2 days because it was excruciating to clench my jaw.
The results came back. Though it was impossible to say conclusively based on a biopsy, the mass was likely a pleomorphic adenoma - a benign tumor. The ENT told me that surgery is the only treatment, but the timing was up to me. These tumors never shrink. They only continue to grow, though usually slowly. There is a chance that, left to grow long enough, these types of tumors can transform to a malignant tumor. All of this information was not new to me. I had been learning all I could about parotid tumors prior to the biopsy and I already knew that I wanted to have the surgery sooner rather than later. The surgery is somewhat complicated due to the location of the parotid gland. The facial nerve runs right through it. So if the nerve is disturbed during surgery, facial paralysis will result. This means being unable to close your eye, smile, or move your face at all on the side of the surgery. This paralysis is usually temporary (lasts a few months), but sometimes permanent. (Permanent paralysis also results if the nerve is cut, either accidentally, or out of necessity to reach all the tumor tissue.)
Because salivary gland tumors are pretty rare, most ENTs only perform a few of these surgeries a year. I knew that there were a handful of surgeons around the country that specialize in salivary gland tumors and discovered that one of the top surgeons in the country was only a few hours away from me at the Mayo Clinic in Rochester, MN. It would have been more convenient to have surgery in my hometown, but I felt like it was worth it to have the surgery performed by a doctor who does hundreds of these a year.
I made an appointment to see Dr. Eric Moore at the Mayo Clinic. When I met him, I knew I had made the right choice. First of all, the Mayo Clinic is an incredibly professional and efficient hospital. Jared and I were impressed with every person we met. I met with the PA first and I appreciated that he said "if you've made the decision to come to Mayo, you've obviously done your research." He treated me as an informed patient and spoke frankly. Most people with these tumors are much older. Because I'm young and hopefully have another 60 years to live (and for the tumor to grow), he said I'd eventually have a "second head" coming out of my neck if I didn't remove it. I then met Dr. Moore, who was confident he could extract the entire tumor with minimal side effects. And he could do the surgery next week. I balked at first, because we had a vacation coming up and I was afraid I'd be exhausted after surgery. But I also just wanted to get it over with. So I scheduled the surgery for the following Tuesday. We then went all over the hospital getting pictures taken of the tumor, bloodwork taken, an EKG, and registering with admissions. Each place we went, it seemed like there were tons of people, but they are so seriously so efficient. There must have been 250 people waiting to get blood drawn, but we only waited about 15-20 minutes. They called my name and I went back. I was back out in the waiting room less than 90 seconds later and Jared asked, "what happened? why didn't they draw your blood?" I showed him my bandage and said "they already did."
We went home and immediately booked a ticked for my mom to fly out and watch the kids during my surgery and while I recovered. My surgery was scheduled for sometime Tuesday morning, but the exact time wouldn't be given until Monday night. We didn't want to get surprised by a 6 am surgery since we had a 3+ hour drive. So we drove up Monday night and stayed in a hotel right across the street from the hospital. It was the first time since having kids that Jared and I took a trip by ourselves. We got to the hotel about 9 PM and I went straight to bed (after calling my mom to check on the kids...I missed them already!)
The day of surgery involved a lot of waiting. Even for such an efficient hospital, you can't rush the OR, so it was a matter of waiting until the doctor was done with his other surgeries that morning. I hadn't had anything to eat since dinner the night before, so I was starving. I met with the anesthesiologist and told him I really didn't want to wake up nauseous. He told me he was already planning on "throwing everything I've got at you" because I had 3 risk factors for nausea: female, young, and having head and neck surgery. (His cocktail worked! I was never nauseous at all!) I think it was about 2 PM when I was finally taken to the OR. There was a nurse anesthetist and an anesthesiologist. The NA was very sweet and reassuring and started hooking me up to IVs. She stroked my hair and said they wouldn't start the drugs without telling me. Just then, the anesthesiologist walked in, clapped his hands and said something like "alright, let's do this!" Someone put a mask on me and I was out.
Because we were at the Mayo Clinic where pathologists are always available, my doctor removed the tumor and sent it to pathology to have a frozen section analysis done before sewing me up. This way, if the section appeared to be cancerous, he could more aggressively remove the margins around the tumor without having to do a second surgery at a later date. Fortunately, it was determined to be benign.
I woke up in the recovery room just before 6 PM with a throbbing earache. It was so hard to wake up. I kept trying to open my eyes, but I couldn't keep them open for more than a second. I finally was able to speak and said to the nurse beside me "my ear hurts." He brought me some pills, and it was difficult to open my mouth to put them in.
I was taken to my room where I'd stay that night and Jared was in there waiting for me. I still wanted to wake up so bad and was so frustrated that I couldn't keep my eyes open. But my ear hurt too much to sleep, either. One of the residents came in and asked me to smile, frown, scrunch my nose, raise my eyebrows, etc. He said I only had a little bit of facial weakness in my mouth, which he said was great, because during the surgery, they thought I'd end up with more, based on where the tumor was.
I also learned that they decided not to do a fat graft (take fat from my stomach and place it in the depression made my removing my gland), and I was surprised to see the large divot in my face. The doctor said that as the surrounding swelling went down, the divot would be less noticeable.
That night was long because I couldn't sleep. I had an IV in my right arm that poked me anytime I bent my arm, and a drain tube coming out of my scalp (to remove blood and fluid from the surgery site and prevent swelling) on my left side. They had my legs in inflatable sleeves that compressed every minute or so. It actually felt really nice, but it was noisy and the movement kept me awake all night. Finally, around 4 AM, I told the nurse I couldn't sleep and she said she could turn them off. I got a few hours of sleep and felt a lot better when I woke up. But I still hadn't had anything to eat since the night before surgery and was feeling weak. My jaw was clamped shut and scraping a tiny pain pill between my teeth was hard enough. There was no way I could take a bite of anything. I slurped a bit of applesauce and drank Ensure.
At 9 AM, another resident came in to check on me and remove my drain. She cut one small stitch that had been holding the drain to my head, then started to pull the tube out. I had no idea how long the tube was, but she just kept pulling and pulling. Jared was shocked. He said it looked about 10-12 inches long. I can't believe a tube that long was coiled up inside my head. As she was pulling, it was extremely uncomfortable and just a very strange sensation. I suddenly felt faint and said "I think I'm going to pass out." I was sitting in a chair beside the hospital bed, so I intentionally slumped down and leaned my head back, but I still went out. When I woke up a couple minutes later, I was dripping with sweat. The doctor called in a nurse and they put me back in bed, but it took a long time to recover from that terrible faint feeling. Several hours later, I still felt weak and woozy. I still couldn't eat, but I was drinking tons. I was also shaking involuntarily. (I have had the same shaking after giving birth. The worst was after Libby was born. I couldn't stop shaking for 2 days, until my doctor prescribed me Xanax. That finally calmed my body down and I could sleep. After that, I was completely fine.) I explained all this to the nurse and she brought me some Xanax. Sure enough, it relaxed me and I was able to be discharged that afternoon.
The next week at home, I was exhausted, but was able to keep the pain under control with regular Tylenol and Tramadol as needed. My cheek and ear were hard and swollen. My outer ear was completely numb. I couldn't chew at all. It was terribly painful to clench my teeth together, but I also couldn't open my mouth. So I drank lots of Ensure. I finally called the hospital to ask about my jaw problems and the doctor recommended doing stretches exercises. I had to try to open my mouth as wide as I could 7 times, hold for 7 seconds, and repeat 7 times a day. At first, opening as wide as I could, I couldn't fit even my pink finger between my teeth. But I wanted to eat so bad, so I kept stretching.
(A week after my surgery, I was able to meet with a refugee family I had previously signed up to mentor. She had prepared lots of food and wanted me to eat. It was hard to explain the situation with her limited understanding of English, and I did really want to try her food, so I took a little bit of rice and stuffed it between my teeth a couple grains at a time.)
By 3 weeks after surgery, I could eat a wide variety of foods, though I definitely wasn't having jerky, crusty bread, gum, or anything tough to chew or that required me to open my mouth wide.
I felt confident that the tumor was benign based on the frozen section testing done during the operation, but it was still good to receive the FINAL result after the tumor was analyzed after surgery. The biopsy and the frozen section had been correct in the most important way: the tumor was indeed benign. But it was a basal cell adenoma rather than a pleomorphic adenoma. The two types of tumors are very similar, but made of different types of cells. I did read a journal article that said basal cell tumors in young adults are more likely to be malignant, so I guess I'm glad the biopsy did not say "basal cell" to begin with. I would have been even more worried for those months before surgery.
For several months after my surgery, I had what is referred to as a "wooden ear." My ear, being numb, felt like a block of wood. As in, if I laid on my left side, it felt like I was lying on a foreign object, or a block of wood. Now, at 5 months post-op, I can sleep on my left side as long as I get positioned just right and sleep on a soft enough pillow. It's not painful, but it is a little bothersome, so I sleep on my right side 95% of the time.
My cheek just in front of my ear still feels numb, like I've been sleeping on it wrong and have lost feeling, but I only notice it when I touch it. It's not something that bothers me. My earlobe has regained most feeling, but still has some dead spots. It's hard to describe. Things that should hurt, like pinching, don't. And things that shouldn't hurt, like touching my ear with my hairbrush, do.
As expected, I have developed Frey's Syndrome. The nerves that used to be attached to my salivary gland and told the gland to produce saliva had nowhere to go when the gland was removed. So they attached themselves to the next closest thing: my sweat glands. Now, every time I eat, my cheek sweats and my ear gets red and hot. It happens every time, no matter what I eat, but if I eat something salty or spicy, it's much more pronounced. Sweat will drip down my neck. So that's fun.
Other than the weird sweating that will last the rest of my life, life is back to normal and I hardly give my parotid gland a thought anymore. I'm just so grateful my tumor was benign and I feel so much compassion for those dealing with malignant tumors or serious illness of any kind.
