Naomi J. Schwenke, Marriage & Family Therapist from Minnesota, USA was diagnosed with a Carotid Plexus Schwannoma in May 2019. Her brain tumour has been only partially removed with brain surgery. Now Naomi shares the techniques she has used to get through such an emotional and uncertain time.
Here is Naomi’s story on Aunty M Brain Tumours:
When were you diagnosed with a brain tumour?
For the past twenty-plus years, I have had chronic ear “problems.” When I was twenty-one, I got a bad cold and an infection in my left ear. The ear infection lasted several months. During this time, my doctors prescribed several different antibiotics and they put tubes in my ear.
None of this completely healed my ear. The pain of the ear infection eventually went away, but my ear continued to feel like I had just walked off an airplane. My ear felt like it was plugged, and at times fluid drained from my ear. Over the past twenty-plus years, I have lived with these symptoms.
Doctors have never been able to figure out what is going on with my ear. Every time I go to the doctor and they look in my ear they say, “Hmmm, that looks strange.” I have no pain, and occasionally fluid leaks from my ear.
While I have adapted to it, I have almost no hearing in my left ear. In September 2018 I got vertigo. I went to an ENT doctor for the first time in many years, and after he looked in my ear, he sounded optimistic that he could get to the bottom of what was going on with my bad ear.
Large Mass In My Inner Ear
He ordered physical therapy to fix my vertigo and a CT scan. I had a CT scan in April 2019. After the CT scan, the doctor and I played phone tag for a couple of days. When we finally spoke, he told me there was a large mass in my inner ear and it looked like it was affecting my skull. He ordered an MRI/MRA.
I had the MRI/MRA in late April and learned from my doctor that there is indeed a large mass in my skull-base that is affecting my inner ear and my brain. He said he believed it was benign given its appearance, and he referred me to another ENT doctor within his practice with experience in skull-based tumors.
I had my first appointment with the new ENT doctor on May 30, 2019. The new ENT doctor welcomed me into his office and informed me that he had cleared his schedule to explain my diagnosis to me.
He pulled up the CT and MRI/MRA images and explained that I have a carotid plexus schwannoma tumor.
What Is A Carotid Plexus Schwannoma Tumor
Schwannomas are tumors of the Schwan cells. Everyone has Schwan cells that cover their nerves. These Schwan cells protect the nerve cells and they regenerate themselves.
In my case, the mechanism that tells some of these Schwan cells to stop regenerating stopped working. The Schwan cell kept growing along my carotid artery, into my inner ear, skull, and up against my brain.
Schwannomas are common, but it is rare for them to develop in the carotid arterial canal. My tumor is only the sixth reported case. They tell me I am special!
What was your treatment plan
He talked with me for about an hour explaining what the tumor was, how they would remove it and the risks of removing it. At the end of the appointment, he advised me to get a second opinion before agreeing to have the surgery with him.
I was in shock when I left his office. I was grateful to be leaving the next day to spend three days with my family in Wisconsin celebrating my little sister’s birthday.
My symptoms were very minimal. I felt pressure in my ear but did not have any pain. Because of where the tumor was pressing on my brain, however, I mixed up my words and sometimes had trouble remembering them.
At times, I had difficulty comprehending what I was hearing and reading. Before my diagnosis, I just attributed these experiences to getting older! These symptoms are very minimal if I have had enough sleep, exercise, and healthy foods.
After my diagnosis, in May I made an appointment at Mayo Clinic for a second opinion. The doctors at Mayo Clinic confirmed the original diagnosis and offered a very conservative approach to removing the tumor.
The doctor who diagnosed me had a much more aggressive plan for removing the tumor and this was very scary. The conservative approach and the experience of the doctors at Mayo helped me decide that I wanted to have my surgery with a surgeon that approached the removal of the tumor conservatively.
Location Of The Tumor and The Risks
Because of the location of the tumor and the risks of surgery near the carotid artery, my doctors needed me to have a balloon occlusion test. This test is done if there is an abnormality in or near one of the four major arteries, and it is a way for them to see whether or not one of my arteries could be temporarily or permanently blocked without significantly affecting the level of blood in my brain.
I had the balloon occlusion test on July 19th, and I am happy to say that I passed this test. I found a surgeon at the University of Minnesota, Dr Venteicher who was humble, kind, and extremely intelligent, well-educated, and had a lot of experience personally with tumors and professionally with removing skull-based tumors.
He was also very conservative in his approach to removing the tumor. He created a team of two other surgeons, residents, and fellows to help him with the surgery.
Additionally, he created a plan for removing the tumor. The first step was a craniotomy to remove the portion of the tumor between my skull base and brain. The second step will be to remove the portion of the tumor in my ear, and the third step will be radiation to eliminate the tumor in my neck.
It is too risky to remove the tumor that is in my neck. I will find out in early June when my second surgery will be.
How do you feel a year on?
I underwent a 17-hour surgery to remove the portion of the tumor between my skull base and brain on February 10, 2020. I am doing well. My surgeons were not sure what they would find in terms of which arteries or nerves it was attached to. They found that the tumor was the size of a clementine and extremely hard. Several surgeons worked on and off over the course of seventeen hours to remove the tumor.
Living With A Brain Tumour
They were able to remove a good portion of it, but not able to get it all. They are hopeful they will be able to remove another large portion of the tumor during the second surgery.
My surgeon thought I would be in the ICU and on a ventilator for two weeks and then in a regular room for as long as needed. They also told me that the left side of my face would be black and blue and that I would have little feeling on the left side of my face.
They also did not know how the tumor had affected my brain and did not know how my cognitive ability would be affected. I went into surgery at 7:30 a.m. on February 10 and went into the ICU at 1 a.m. on February 11. I was on the ventilator for about eight hours and in a regular room by 1 p.m. on February 11. The doctors were shocked at my progress.
I had facial numbness, but cognitively I was present and aware and knew and understood questions and could engage with everyone around me in normal ways like I did prior to surgery. I had some pain that was manageable with pain meds and only needs this medication for a few days.
I also never got the black and blue face that they thought I would get. I went home seven days after my surgery and continued to get better and do regular tasks over the next several weeks.
I was ready to go back to work on March 16, but the COVID-19 pandemic shut everything down. It was not new to me to be home, but it was surreal to not be able to resume my normal life. The only symptoms I still have facial numbness and pressure in my head when I put my head below my heart. It comes and goes.
Sometimes my face feels like I have a dozen pins sticking into it and sometimes it itches. One issue I had for a long time after surgery was sleep. I could not sleep. I did not feel tired, but I could not sleep. This was hard and has only gotten better over the past few weeks. I am still not doing physical exercise, but I will resume this in the next few weeks.
How has your life changed?
My life has not changed that much since my Carotid Plexus Schwannoma surgery, and it has changed quite a bit. Before my surgery, I would have described myself as anxious and worried most days. I have survived a couple of traumatic experiences in my family and completed a PhD, but generally felt quite anxious.
When I was diagnosed with the tumor, I had to figure out how to deal with this anxiety in ways that I had not dealt with it before. Anxiety is about control and fear of the unknown, both of which are present when dealing with a brain tumor diagnosis.
I Help People Dealing With Anxiety
As a psychotherapist, I help people daily dealing with their anxiety. I had an intellectual knowledge of how to deal with anxiety, and with the diagnosis, I learned to deal with the anxiety in a much more authentic, vulnerable, and courageous way.
Since my surgery, we are dealing with a global pandemic, and I do not feel as anxious about this pandemic.
I went through a series of experiences and exercises to emotionally prepare to give up control and be ok with the unknown with my surgery. It changed me, and now I can be much more present in the current state of the world.
I would say I have normal levels of anxiety and frustration, but it does not overwhelm me like it would have prior to surgery. I am much more optimistic, love life, purposeful in day-to-day activities and in what I give my energy to. I always say, “nothing like a brain tumor diagnosis to help you figure out your life!”
What is the toughest challenge a survivor faces?
I think the toughest challenge a survivor faces are navigating life with the reality of having to deal with a tumor. Life does not stop. We still must engage in life as we navigate doctor appointments, pain, changes to our routines, and the ways that it affects our relationships.
Life is different for us, and it is hard at times to navigate other people’s expectations of us or to deal with their expectations of the “pre-tumor” us. Also, there are medical system challenges to navigate. In the United States, our healthcare system is awfully hard to deal with.
I work in the healthcare system, so I know what questions to ask and how to get my needs met in a very broken system, but a lot of people don’t know how to navigate it and have to deal with the uncertainty and confusion of the system on top of their diagnosis.
Any advice for people or loved ones that get a daunting diagnosis?
- Get a second opinion on your diagnosis and then do as much research as possible about your doctors, healthcare system, and other people who have been through what you are going through. Confirmation from another doctor about my diagnosis made me able to make decisions about next steps and reduce anxiety.
- Listening to other people’s experience or seeing their progress on social media helped me know what to expect and how to approach my experience. When I saw other people dealing with similar diagnoses and surgeries, I felt like I was not alone in my healing journey.
- Establish a routine of meditation, prayer, mantra reciting, and daily routine. In doing this you have an outlet for handling all the comfortable and uncomfortable emotions that come up because of the diagnosis.
Something important is to pay attention to who you are sharing your experiences with and pay attention to what you say to someone who has been diagnosed. When I was first diagnosed and started telling people about my diagnosis, I had a few different kinds of responses from people.
- 1st Example: Their response was, “Oh Naomi. I am so sorry. What do you need?” This statement and question were helpful. It was a question that I could not always answer, but it made me feel heard and supported by hearing them ask the question.
- 2nd Example: Another response was, “My sister had a tumor, I think like yours, and it was attached to her brain stem, and well, she had a stroke on the operating table, and she’s not doing very well.” This was the first response I got from someone when I told them that I had a tumor and it was not helpful. By telling me their story, they invalidated my experience and made me think that they could not handle hearing that I had a tumor diagnosis. I did not share anything else with them about my experience. It was more about them than about me, and I had to spend the rest of our visit assuring them that I would be ok and to not worry about me.
- 3rd Example: Another response I got was complete silence, a glance in the opposite direction, and then a change in subject. This response shocked me, and I did not know what to do.
Make sure you feel comfortable with the person you are sharing your experience with and understand that the way people respond to you about your diagnosis has nothing to do with you. The person you are sharing it with may or may not know what to do with the information you are giving them or know how to respond.
What motivates you?
I am motivated by my family, my work, and my love of life. I have created a relationship with my family that feels good and is well-balanced. My nieces inspire me with their personalities and the ways that they see life.
I am so motivated to see who they are becoming and supporting them in that process. My partner Nathan and I are creating a positive, well-balanced life and it is so motivating to create this life with someone who helps me be the best version of myself and loves me when it is hard to be the best version of me. I work as a psychotherapist and consultant helping individuals, couples, and families navigate their relationships with each other, society, and organizations.
I am honored that people allow me to come alongside them as they find ways to heal their emotional, mental, spiritual, and physical well-being. It is an inspiring process that motivates me in my own relationships with family, society, and systems. I absolutely love life. It is full of challenges and often feels unfair, but I am inspired by all that it has to offer and feel positive about the courage it takes to engage it fully.
Who are your personal heroes?
My heroes are individuals who choose courage over comfort. Who choose vulnerability over perfection and who choose self-compassion over shame. People who can do this have taken the time to understand and own their stories. This is hard work and it is worth it.
What is a great gift to get someone with a new diagnosis?
Gifts that demonstrate how well you know them and what they like.
The best gifts I got were:
- Handwritten notes from my family and a collection of photos put to music by my nieces the night before my surgery.
- A gift certificate to their favorite restaurant
- A gift certificate to their favorite activity
- A subscription to their favorite magazine
- Also, positive quotes that can be hung on the wall or carried around with them on a mug as they drink their tea or coffee.
Tell us something about yourself that not many people know?
For one year prior to my surgery, I meditated at the same time morning and evening, listened to a couple of my favorite songs, and wrote out my intentions for healing from this diagnosis.
I never shared this with anyone. It was my process, and it helped me immensely. I recited my meditation and my mantra and sang my songs in my head as they wheeled me into the operating room. I could not leave my anxiety at the door of the OR, but I could go into the OR with tools that made me feel grounded and safe.
Conclusion: Thank you so much, Naomi J. Schwenke, for sharing your personal story. A Carotid Plexus Schwannoma really is a very rare type of tumour. It is so interesting how you are processing things from a phycological aspect. Thank you for the suggestions on how others can also use these techniques.