Parotid Patient Journeys
Our shared experiences unite us as a parotid community. Learn from other patients and read their inspiring stories.
We hope you will consider sharing your story to help support fellow parotid patients through difficult times.
"Faith Over Fear"
Hello! My Parotid story has kind of just begun. Back in June of this year (2021), I noticed a small bump right under my right ear lobe. I thought that it may be a lipoma, because I tend to get lipomas. But, I have never gotten one on my head or neck. So, I decided to have it checked out. At that time, I didn't have a PCP because mine had left the medical facility that I go to. So, I saw a NP instead, just to have it looked at. She sent me for a CT scan. She knew that it was something of concern, but didn't know exactly what it was.
So, she sent me to a ENT. As soon a he saw my "bump", he knew exactly what I was dealing with. Of course he had also seen my CT scan. When he first started explaining what it was. (Pleomorphic Adenoma). I could feel myself starting to tear up once he mentioned the word "surgery". I fought back the tears, and l listened to him carefully. Absorbing all of the information that I could. I felt very comfortable with him. I found out that not only is he an ENT, but he is also a head and neck surgeon, with plastic surgery, reconstructive experience. I looked him up on Health Grades after my visit. I compared him to other doctors in my area. I still feel comfortable with him. I do wish however, that I had the option of going out of state with my insurance and choosing a doctor at a cancer specialty center, just in case. The Dr. sent me for a MRI and Biopsy. The biopsy results came back as benign. We discussed the surgery further, he answered all of my questions. Then, he set me up for my surgery.
I am scheduled for surgery on October 26th 2021. I wish that I could ignore it, and make it go away. But, as the doctor told me, and many have expressed online, it is best to have it removed asap to avoid other complications. I should mention, back in 2002, I had a major surgery (resection) where I was diagnosed with Crohn's Disease. It was my first ever surgery, and was hoping, my last. I remember feeling so thankful that I didn't have cancer back then, and survived that surgery, and had a second chance at life. Life has taken me in many different directions since then.
My kids are all grown, (21-23-33-35) and out of the house. We now have an empty nest per se'. I have one grandchild that is 11 months old. Who is a bright light in all of this. I do have my elderly father who is living with us. His health has been a crazy roller coater since last Summer. He has been living with us since February 2021. Life is pretty crazy for most of us these days, with Covid etc. It is especially crazy adding in a surgery. But, I am trying to keep the "Faith Over Fear" mentality. I have been focusing on my health such as rest, vitamins, diet, and skin care. Doing all that I can that IS in my control. I've been trying to avoid stress. I'm finishing up household projects that need to get done before surgery. Planning way ahead to be prepared, so that I can truly rest.
I'm the one that is usually always caring for others. I have been praying for my surgeon, and the care team, for clear minds & steady hands. I've done my research, and have been following many Parotid group pages. So, I feel like that's all that I can really do. Everyone elses stories really do help so much! I hope mine will help someone in some way. I love what Heidi is doing with the Parotid Patient Project. It is bringing us together so we don't feel so alone. Thank you Heidi! Best wishes to all of you on YOUR Parotid Journey!
P.S. My pic is from my wedding in 2012. I plan to add some pictures on the Facebook group page post surgery!
Power of Positivity
I'm a 62 year old male on day six post- op parotidectomy with tumor excision. Fortunately, the mass was benign. The hardest part was waiting for the biopsy results and spending a lot of time reflecting. Every individual has their own way of accepting the outcome and as family members and friends go, I would say it's better to talk with people about it instead if internalizing it. Doing so for me allowed me to more easily accept what was happening and what could happen and how I would deal with it. The surgery was explained to me as more of a nerve isolation process to insure protection of the facial nerves.
I was fortunate to have two surgeons, both ENT's and one with additional plastic surgery under his belt. The incision is plentiful and very well closed. So day six. Swelling was the worst on days four and five and today is a bit more comfortable. The drain was in for 24 hours and I spent the night in the hospital. Staff was excellent. Very comfortable. To the families and friends- please practice empathy and help as much as you can. It's difficult to see changes in your face with an incision and taking pain killers can be a bit challenging for others as well as yourself. Looking back I would not change anything. The entire process brought me closer to family and friends and know that as difficult as it may seem, your very likely in good hands and will be well cared for.
Healing with Humor
My parotid gland tumor was an incidental finding during a CT Scan for other purposes in August 2020. I was completely asymptomatic. The CT Scan revealed no other problems which helped diffuse the various emotions of this finding. My wife found a surgeon experienced in parotid gland tumors in Kansas City. I had surgery on October 20, 2020.
The procedure was successful and the tumor was relatively small at nearly 1.5 inches wide. Pain subsequent to the surgery was delightfully minimal. The worst was the drain tube that stayed in place for 72 hours. I ceased taking pain meds subsequent to its removal. Five days after surgery, the hole from the drain tube somehow reopened, dripping saliva through the hole. Consultation with the doctor's office revealed this phenomenon is unusual but not unknown. It finally closed three days later.
Long term affects have been minimal. The right side of my face, particularly my ear, is still numb nearly 13 months later. Given the size and location of the tumor, nerve resection was part of my surgery and I had been warned about possible long term to permanent numbness prior to the surgery.
Numbness is a small price to pay. It could have been cancer.
Plus, I have treated this ordeal with some humor. I have joked about how this surgery allowed me to rediscover my long lost, well-defined jaw line at age 48.
Answers through Advocacy
I was first diagnosed with a pleomorphic adenoma in my parotid salivary gland when I was 20, in 2002, but it had taken over a year to get a diagnosis after I had discovered the lump. It was a relief to have answers and a solution after going through that period of having the symptoms being either ignored or misdiagnosed.
And then I found multiple lumps again around 19 years later. I had an excellent surgeon the first time around but all it takes is just a single cell being left behind.
I wasn’t about to go through the mess I had gone through before, so even when an ultrasound came back with a report of "swollen lymph nodes" I requested that I see an ENT. After a CT scan report said "fatty hematoma" I said I would feel more comfortable with a biopsy at least.
There were at least 20 pleomorphic adenomas in the left side of my face and neck. The largest was 3/4 of an inch thick and attached to my facial nerve. The surgical team at the clinic I went to was able to remove them all with no permanent damage to my facial nerves.
I am grateful that I listened to my body and that I have the luxury of doctors willing to take those extra steps, particularly given my history.
Teaching Lessons Learned
In March 2021, I discovered a small lump behind my right ear. From years of working and teaching in the dental field, I knew this was not good. I had to convince my physician that it was "something" as she could hardly palpate it. Her first impression was that it was a lymph node, that it would go away, and she prescribed antibiotics. I visited my dermatologist who also had difficulty finding it and thought it could be lymphoma. I believe if I had not been a dentist my physicians would have asked me to monitor the lump, but they knew I was concerned so an ultrasound was ordered. I’ll never forget the face of the ultrasound technician. While she did not say anything, the fact that she kept going over the same area and kept quiet spoke volumes. The radiologist that interpreted the ultrasound then recommended a fine needle biopsy and the diagnosis started coming into focus.
By the time my MD referred me to an ENT, I had found the Parotid Patient Project website and joined the Parotid People Facebook group. I knew enough to know the odds were on the side of a benign tumor but also knew the surgery would be tricky depending on the tumor location. I poured over the information provided on this site, asked for a CT scan prior to meeting with the local ENT and formulated a list of questions. There are several surgical options and I decided to seek a second opinion as I preferred an outpatient procedure, that the drain be removed soon afterwards, preservation of all nerve function, and a near immediate frozen pathology report from the operating room. I wanted the tumor gone entirely with no chance of recurrence!
I encourage anyone with these types of tumors to get a couple of opinions and make sure all their questions are answered. The surgeon I eventually chose was to the point, confident and reassuring. Experience is key and after all the angst, seeing the surgical team brought me a sense of calm. The surgery was in May and the outcome was successful with complete tumor removal, clear margins and no permanent nerve damage. The pathology report confirmed pleomorphic adenoma, and it was such a relief to hear that as I came out from the anesthetic. My earlobe felt “different” for nearly six months but that resolved and the incision is not noticeable.
The photograph with this story was taken four months after surgery! I specifically give credit to this site for linking me to the appropriate experienced and caring surgeon. I was also fortunate enough to meet the site’s founder the day before my surgery, and she is a wealth of information. As odd as it may sound, I asked the surgeon to take pictures of my tumor and he obliged. I now show these photos to my students and colleagues to reinforce the necessity of thorough head and neck exams during dental visits and to tell them to listen to their patients! These tumors are rare, and it takes some sleuthing to diagnose them. Most lumps are not good lumps and even the good lumps can lead to long term problems.
Advocacy, Faith, and Perspective
Hello, I am new to this site and just found it while looking for others to connect with. I just had my parotidectomy surgery on Tuesday. I came home that night after much nausea and dizziness. I was surprised by how many stitches I have and my Right ear and face are numb and feel like Styrofoam. I am hoping the swelling goes away as I do look different. My story started in the fall of 2020. I noticed a bump behind my Right earlobe and went to see my PCP. She said to watch it and see if it gets bigger, thinking it was a lymph node. Finally in 2022, I decided this was only getting bigger and I needed to see an ENT. The ENT ordered an MRI which confirmed what he thought- a Pleomorphic Adenoma. It had grown since 2020 so he said I needed surgery. We did not do a biopsy as he said it would not change having surgery. Hence, less trauma, and the surgery was done 2 days ago. I did receive the pathology today which is Benign, thank you Lord. Going forward, I have learned to advocate for myself no matter what and to take whatever time I need to stay healthy and take care of myself. I will not put work first anymore. Through much prayer and support of family and friends, I am grateful to have had this done. Now I look forward to the swelling to go away and hopefully be able to feel most of my ear.
Persistence Creates Hope
I had a Total Right Parotidectomy and Accessory parotidectomy in March 22 but not because of a tumor. I had a complete stricture of my accessory parotid and issues with the parotid. The blocked gland/duct was excruciatingly painful. It took over two years for me to find a doctor/surgeon who didn’t brush it off as atypical facial pain and would think out of the box to diagnosis the problem. Nothing but inflammation was being seen on imaging. My journey isn’t over, whatever is causing the swelling on the right side of my face and neck continues to elude the medical world but I want to share a summary of my story, maybe it will help someone else that doesn’t fit in a box find the cause of their pain.
First I want to thank Dr. Eric Moore, M.D. and Heidi for their time spent putting together all the fabulous You Tube information video’s. My surgeon is exceptional, but I inevitably miss asking something when I see him. Being able to focus and learn about the surgery and possible side-affects in a calm environment was so helpful. When it was time to go over the surgery with my surgeon I told him I was all set that I had watched their video’s. He said that is great, what did you learn? When I told him, they had not missed a thing I needed to know! I started clenching my teeth on the right side in 2016 and I had slight swelling under my right eye. I thought the clenching was stress and swelling was age, I was 47 after all.
In February 2020 my sinus’s started feeling full but there was nothing there. I got in to see an ENT, had a CT scan and needed sinus surgery. I have never had sinus issue’s so this was very unexpected. Unfortunately, due to COVID shut down they didn’t get me in until May of 2020 by which time I was in a lot of pain. Surgery took some of the pain away but the swelling under my eye continued and the pain in my jaw continued to escalate. I was sent to a neurologist who after less then five minutes said I had Trigeminal Neuroglia. That set the doctors on a path of atypical facial pain. It became very difficult to get anyone to listen to me and for them to think of anything but a nerve issue.
The swelling under my right eye was ignored and the pain continued to escalate. My thyroid surgeon in July 2020, acknowledged the asymmetry and swelling under my eye. It is hard to explain what a relief it is when a doctor actually looks at you, hears what you are saying and takes the time to acknowledge it. It gives you hope which is so crucial. It has been my experience that most doctors have no idea how truly important hope is to their patients. In August 2020 by the grace of GOD, I caught an object that seemed to come out from the inside of my cheek and I kept it. It was 1/8" x 1/16” very thin and jagged. After it came out the stabbing pain in my jaw went away and I stopped clenching almost instantly. The pain across my face remained.
I showed it to ever medical professional I met hoping someone would know what it was until I had a PA break it in half and call it a piece of cardboard. Then I just brought the photo. In Jan 2021 I saw a new neurologist that put in her notes the object looked like a saliva stone and she did not think I had Trigeminal Neuroglia. In May 21 I saw my endocrinologist who read her notes and suggested I see an ENT about my saliva glands. I asked my thyroid surgeon if he knew who I should see for the saliva glands and his assistant got me in to see their saliva gland specialist within the week.
The saliva gland specialist was not convinced I had an on-going issue because I did not have any clinical signs but he did not send me away. He sent the stone I had brought with me to pathology which was confirmed consistent with a saliva stone and he performed a Sialendoscopy in office. He was thorough and found a strictured accessory parotid gland. Restored the hope I desperately needed! He didn’t just jump in and take out the glands. He put a hole in the duct to drain the saliva, which closed within a month. Then another bigger hole which only helped for a little while. Botox to stop saliva production to assess if the pain stopped, which It did for a whole 9 days, what a relief. When the pain came back, it was obvious the glands needed to come out. It was the right decision.
My incision is not small it goes to the middle of my neck fit neatly into a wrinkle, all my facial nerves are in working order and I did not have reconstructive surgery. I still do not have feeling in my ear or neck but that is okay, that horrible pain in gone and I anticipate the feeling will come back eventually. Scarring was the least of my concerns but not my surgeons. He and his wonderful team did an amazing job. I wonder how many people are out there labeled with atypical facial pain when their issue is something similar to mine and eluding detection. I had a lot of imaging done. It missed the very painful tiny saliva stone and the accessory parotid gland.
It is so important to advocate, no matter how tiring, frustrating or depressing the health care system can be. Doctors are given so little time to know their patients and they don't have time for complicated cases. Don't not say something to your doctor because you think it might make you look silly. You live in your body they don't. There are a lot of unknowns in the medical world. It is so important to be informed and read the notes your doctors write, make sure they are accurate. Other doctors and nurses read them and many form opinions of you before you even meet them. You also may pick up on something that helps, like the neurologist noting it could be a saliva stone. You never know who is going to get you where you need to go to find the answer.
Experience is Priceless
My parotid journey began with an ear problem. I am an avid swimmer and I swim every day that I can. In mid- June of 2022 my right ear felt full- like congestion or an infection. I thought I had swimmers ear. I went to the local walk in clinic twice and they diagnosed me with ear wax. My ear was blasted out twice with water pressure and I was told to go home and put Debrox in my ear to remove wax. My ear did not feel better. My daughter is a nurse and she looked in my ear and thought it looked “mucky” and infected. I went to a CVS minute clinic and they gave me antibiotic ear drops. After 8 days with no improvement, I went back and they gave me oral antibiotics and different ear drops.
During this time I was waiting to see an ENT. When I finally got in to see her after 6 weeks waiting for an appointment, she didn’t know what was in my ear either. She said it looked like a fungal infection. Gave me different ear drops. After 2 weeks went back and ear did not look better- in fact she said it looked worse. She took a biopsy and told me she did not know what it was. I decided to see another ENT. She took a look and I could tell she was very concerned. They did a hearing test which showed a 20 percent hearing loss in my right ear. They ordered a CT scan without contrast. The CT scan showed a growth on my ear drum growing outward into my ear canal. No involvement of anything behind the ear drum.
The CT scan suggested it was a benign growth but recommended an MRI with contrast. I had two MRIs with contrast done. One of my head and one of my right face. Both of these scans showed a tumor 3cm x 1.6cm in my deep. parotid and a tumor 1 cm x 0.6 cm in my ear canal. I was referred to a head and neck surgeon in Indiana. To say we were shocked by what the doctor said was in the scan was an understatement. He described what he thought was a large malignant tumor in my parotid. He told me I would need an 8 to 10 hour surgery, a thigh muscle graft and a weeks stay in the hospital in intensive care. My daughter and I walked out of the appointment in tears.
Luckily, a friend suggested that I look on Facebook for support groups. I found several groups and this website. I started asking people questions and through them I found Dr. Eric Moore and the Mayo Clinic parotid videos. After watching them, I immediately called Dr. Moore's office and badgered them daily for an appointment. I knew my tumor was probably malignant and I already wasted a lot of time with several wrong diagnosis. I saw Dr. Moore on September 22, he was also very concerned about the way my scans looked. He wanted me to have a CT aided biopsy and a Pet Scan. I had the biopsy at Mayo the next day. The team who did the biopsy was wonderful. It wasn’t fun but tolerable. I received the result that my tumor was a high grade acinic cell carcinoma. It needed to come out fast!
Dr. Moore was able to schedule surgery on October 5, 2022. He enlisted the help of Dr. Driscoll who would remove my ear canal with the tumor in it. My surgery was 8 hours long. The tumor was twisted around my facial nerve., Dr. Moore did not want to cut the nerve because I had no facial symptoms. Instead he cut the tumor in half over the nerve and removed one half at a time leaving the nerve intact. Dr. Moore used fat from my stomach to fill in the space where the parotid was. I had surgery on Wednesday. I had two drains - one in my neck and one in my stomach. The drains were removed on Friday and I was discharged home.
Today, I am 5 days out from surgery and doing well. My face is still droopy but that should improve. I am making appointments for consultations with radiation oncologists near my home in Indianapolis because I will need 6 weeks of radiation treatment. Because I was only 64 I did not have Medicare and my insurance did not cover Mayo Clinic. I used my retirement savings to self pay for surgery at Mayo. I felt it was well worth the cost to have an experienced doctor like Dr.. Moore perform my surgery. I am thankful for everyone on this website and the Facebook pages who helped direct me to Dr. Moore and Mayo Clinic. I look forward to updating everyone on my progress and helping anyone else going through this traumatic diagnosis.
Faith, Hope, and Healing
I first found the lump in my neck during Covid my doctor had retired, and I had to find a new doctor when doctors were not taking new patients. I had to wait because of my insurance and a referral was necessary, so the process was lengthy. Meanwhile, the lump did not hurt nor did it grow. After finally going through the process of testing and getting to the right doctor to diagnose me, I was diagnosed with parotid tumor BENIGN! That’s all I wanted to hear .. from then on it was going through the motions to have surgery, which was concerning due to the complications of facial paralysis, but having faith in god and my doctors I feel I have prevailed.
I am on the way to healing- thank you god and Dr. Houston of Coastal ENT in Neptune. He is very caring and knowledgeable and explained in detail the good and bad of the surgery. I have a lot of numbness but no facial paralysis and do not know yet if numbness is permanent as my surgery was only a week ago. Very ugly scar as of right now, but he assured me it will disappear over time. I feel blessed.
Health, Happiness, and Blessings
My parotid journey started a few years ago. I began having some problems with "zings" and pain in both jaws when eating some foods. This was intermittent and although annoying, did not seem like a big deal. My PCP thought it might be TMJ and treated it as such. As a result of these symptoms, I became somewhat hyper-aware of my parotid glands and about 2 years ago I noticed that my left parotid seemed to be swollen and might have a lump. When I finally saw and ENT early this year, I was diagnosed with pleomorphic adenoma that was about 2.5cm and it was deep.
On 8/15/22, I underwent left total parotidectomy. The surgery had a more difficult recovery than I expected. I had significant post-op pain and at about day 10, I developed a salivary fistula behind my ear. This was frustrating, depressing and painful. My surgeon, though somewhat experienced in parotidectomies, had not dealt with many surgeries as extensive as mine or with the development of fistula. Fortunately, after about 3 weeks, the fistula closed. My surgeon treated it by opening the incision where the fistula occurred and re-stitching it. I also used scopolamine patches to cause dehydration to reduce the salivary response in the remaining parotid tissue.
I am now about 3 months post surgery and I feel pretty well. My scar is fading and do not have significant lingering symptoms. I do still have some problems with pain when I eat - known as "first bite syndrome" - but this is fleeting and tolerable for the most part. I still have numbness at my jaw line and my left earlobe has no feeling. My smile is a little crooked, but it is so subtle, only I really notice it. The residual effects I have appear to be normal. As I have read on this forum, it takes a long time to heal from this surgery and due the significant nerve involvement, some things never fully recover. I am grateful to this forum for providing me with very valuable information and advice.
I want others who are going through this to know that you will heal but it will not be easy. This is big surgery and should not be taken lightly. Be sure you feel comfortable with your surgeon or find another. Ask questions. Read this forum and use the valuable information and advice that has been compiled here. Find someone to help you after surgery.
You will need all the support you can get from family and/or friends. I am also very grateful to my wonderful husband, Patrick. He took amazing care of me after my surgery. He attended to my post op drain, he helped me clean my wound and he provided encouragement and moral support when I was discouraged with my healing process. I don't know how I would have gotten through this without him. Since surgery, we have taken 2 trips and we are looking forward to a happy, healthy and blessed holiday season! The attached photo was taken during a recent cruise, about 2.5 months post surgery. Hang in there, you will get through this!