Jess survived myxopapillary ependymoma | pregabalin | duloxetine | spinal cord stimulator | lower lumbar

10 hours ago
14 min read

DESCRIPTION

When Jess began to feel pain in her right leg in 2020, she thought it was sciatica. When extreme pain radiated to her lower back, a physical therapist thought she had a bulging disc. However, her condition worsened, she went in for an MRI, and it revealed a tumor originally thought to be on her spinal cord. Further tests indicated the tumor was inside her spinal cord and a diagnosis of myxopapillary ependymoma, a rare cancer. The tumor was surgically removed, but her post-treatment life was very difficult. There were prolonged instances in which she could not move her legs, which brought her to tears not only from the pain, but the chilling thought of the rest of her being spent in bed or on the couch. Jess went through all sorts of medications from morphine to medical marijuana, but medical savior was a spinal cord stimulator. It has enabled her to maximize her movements with little or no pain.

In 2020, Jess led an active lifestyle. It included soccer and other activities with two young sons. But she started experiencing pain in her right leg. She thought it was sciatica but believed it would go away. When it didn’t, and pain radiated to her lower back, she saw a physical therapist, who thought Jess had a bulging disc. One night at home, Jess fell and said one of her sons looked her in the eye and told her she needed to see a doctor.

Jess underwent an MRI. It indicated she had a tumor on or near her spinal cord. Doctors were initially baffled because they could not pinpoint the tumor’s location, but additional tests showed the tumor was inside her spinal cord. A surgical procedure to remove the tumor was completed successfully. It was after the procedure when Jess was regaining consciousness in her hospital that she was informed she had Stage II myxopapillary ependymoma, a rare cancer. Ten days after surgery, Jess underwent a spinal tap at the location of the tumor to determine whether any tumor cells had been left behind. Thankfully, the results were clear and have remained clear ever since.

However, many challenges awaited Jess. There were instances in which she was immobilized, having to remain in bed. She felt pain from head to toe. Certain fabrics rubbing against caused pain. As did extreme temperatures or the wind. She was prescribed opioids, which she said did nothing to alleviate the pain. She was given morphine. Eventually doctors prescribed pregabalin and duloxetine, medications which were able to reduce the pain. Jess also tried medical marijuana, which reduced the pain.

The biggest development in her recovery was her working with a specialist in New Hampshire who performs spinal cord stimulator procedures. Jess completed a trial with a stimulator and when using it, much of her pain was gone and she regained much of her mobility.

Jess says her spinal cord will never be the same and neither will she, but she is grateful for the mobility she has. She adds that since October 2025, she has been sober from alcohol and cannabis.

Additional Resources:

Support Groups:

The CERN Foundation: https://www.cern-foundation.org

walk.talk.connect: https://walktalkconnect.org

Book:

ReConnected: Stories from Spinal Cord Tumor & Dawn Standera, available on Amazon

https://www.youtube.com/@reconnected-SCTtumorstories

TRANSCRIPT

Bruce Morton: Greetings. This is the @CancerInterviews podcast. I’m your host, prostate cancer survivor Bruce Morton. A diagnosis of a rare cancer packs a lethal one-two punch. In addition to it being cancer, because it is rare, the patient has to find a competent care team, which is not always an easy thing to do. Our guest on this episode is Jess, from Portland, Maine, who survived ependymoma, involving a central nervous system tumor located inside the spinal cord. Not only has she survived, but she is taking action to help others. Now it is time to hear her story, and Jess, welcome to Cancer Interviews.

Jess: Thank you so much, Bruce. It is a pleasure to be here and to help others navigate this rare diagnosis.

BM: It is custom to learn more about our guest before we get into their cancer journey, so, Jess, if you would, tell us about what you have done for work and what you like to do for fun.

J: I have spent most of my life working in the community with childcare. I started out in the local rec department, working with the kids. I went to school to learn about early childhood education, graduated with my degree and started working at the local nursery school that I attended as a three-year-old. It was an amazing experience working with my preschool teacher and learning from very seasoned childcare teachers. I then moved to the local public school, where I served as an instructor, helping kids meet their goals in math and writing and reading. I have always enjoyed working with kids and seeing their face light up. I really love my community and I love giving back. That makes me happy inside. Some of my hobbies now are playing the guitar. I like hanging out with my friends, going to the lake and the ocean. Summertime is my favorite. It always helps with my dysfunctional nervous system. The warm sun, it really heals. I take advantage of the beautiful days, gardening.

BM: As for your cancer journey, all of us experienced that point in time when our health went from seeming normal to being something other than normal. For you, when did things take a turn for the worse, and what changed?

J: It started back in 2019, I noticed severe sciatica in my right leg. I assumed I was just getting older. I was very active. I would go tubing with my kids. I have two boys, so I try and keep up, but I was slowing down. Soccer was becoming hard. I couldn’t run anymore. I couldn’t jump. I just had severe, severe sciatica, and I put off seeking medical attention. It was Halloween in 2020, when I could barely walk. I was working remote for the school because it was the beginning of the pandemic. I was stubborn. I knew something was wrong, but I was just wishing it to go away. The initial diagnosis happened in 2021.

BM: The symptoms that you mentioned, the sciatica, aren’t necessarily synonymous with cancer, so when those symptoms did not indicate cancer, what eventually did lead to your diagnosis?

J: Well, I was in physical therapy. The sciatica was in my lower back, so they thought I had a bulged disc. I was sitting a lot for my job, so my employers, they got me a sit-to-stand desk to relieve the prolonged sitting on Zoom during those awful years of COVID. I once stood up and my leg did not work and I fell. My oldest son caught me, looked me in the eye and told me I needed to see a doctor. They scheduled an MRI and that’s when I knew something was really wrong.

BM: And at that time were you diagnosed?

J: I was diagnosed with a tumor. They thought it was laying flat on the spine. They couldn’t really tell from the imaging. I next went to a neurologist and they prepared me for surgery. They told me that they thought it was something else, but they weren’t sure until they got in and I had surgery about a week later. They got me in because I was losing mobility. I could barely walk. I needed a lot of assistance and a wheelchair to move around. Then I was experiencing blue sparks in my eyes. That was from pressure from the tumor on my optic nerve. I got blood work every year, physicals all the time, so it was very tricky, coming up with a diagnosis.

BM: It is always a horrific, singular day when one is diagnosed with cancer. We already know such news is life-changing; but each person’s makeup is different, each diagnosis is different. Given the variables, tied to your cancer equation, how did you handle this news?

J: Well, I was in my hospital bed by myself because it was COVID when I learned of my cancer. They woke me up from anesthesia and told me that the tumor was inside my spinal cord. They sent me over to pathology and gave me the diagnosis of Stage II myxopapillary ependymoma, and told me that it was very rare. They said I would have to be treated by another doctor because they had never seen it before. I was thankful that the surgeon actually went through with the surgery. He could have opened me up and determined the tumor wasn’t on the spine like they originally thought, closed me up and told me I would have to find another doctor; but he was courageous and cut through the liner of my spinal cord. He took the tumor out. The procedure was very successful. However, I did leave with a spinal cord that will never be the same, and a lot of nerves were extracted, along with the tumor was wrapped around the nerves at the end of the spine and they had to take those out. I woke up not being able to move my legs.

BM: By the way, we hope you will take time to like and subscribe to our channel, and if you click on the bell icon, you will be notified anytime we post an interview. We also want to remind you that on Cancer Interviews, we are not distributors of medical advice. If you seek medical advice, please contact a license health care professional.

Jess, we had mentioned at the top that being diagnosed with a rare cancer is doubly difficult because on top of everything else, you have to find a care team that knows what it is, but if I am hearing your correctly, it sounds like you didn’t have to search for one because you already had one.

J: My doctor was from Tufts University in Boston. He did the surgery in Portland, Maine. Once he did it, I sought out the CERN Foundation in Minnesota. They help people diagnosed with ependymoma. There are four different kinds of ependymoma. I was able to learn all about mine and was able to get in contact with Kim Walgren, the director and founder of the foundation. She told me there was a neurooncologist in Portland, who has dealt with ependymomas, especially myxopapillary ependymoma, which is my specific diagnosis. I was able to connect with her. I was very thankful. Again, it was during COVID, so I did not have to travel a long distance to see her.

BM: Let’s get back to your surgery. If you look to the time during treatment, as opposed to post-treatment, what was the toughest part.

J: Re-learning how to do everything that I used to be able to do with ease. Every movement hurt, fabric hurt, temperatures hurt, my legs flopped, I had a walker for several months and I had in-home physical therapy. I mean, the hardest part was grieving the life I used to have. I mean, it wasn’t physical as much as it was mental and what is my life going to be like in five years, my hopes and dreams that I had and grieving who I used to be.

BM: And against that backdrop, how were you able to keep your spirits up?

J: Oh, my family. I have a very supportive family. I have faith that I follow, and I took it day by day. It wasn’t perfect. I cried several tears. My child have been molded a different way because they have seen a mom struggle with pain. I tell them that my tears are not because of anything they have done and my boys have done countless things to lift my spirits. To see them grow into the young men that they are now has shaped me in a way, but it has also shaped them to be empathetic to others who have been diagnosed with cancer.

BM: Your ependymoma. We have talked about the diagnosis, and we have talked about the treatment, and we have briefly loved into the post-treatment era, but when you got into post-treatment and this is the sad part of our interview, describe the parts of your body where you experienced pain, and how acute was the pain?

J: It was my whole body. The whole spinal cord, the pain radiated through my head, my arms, my fingers, my toes, certain fabrics rubbing against me caused pain. My mom would put her hand on my back to comfort me when I was crying and I would fall to the ground because electricity would surge throughout my whole body. I felt like I was being electrocuted in water or someone putting barbed wire around my whole body and then wanting me to move. I felt extreme pain. Have been in the hospital several times with them giving me morphine when they couldn’t find a medication suitable for me to take daily. It was 2022 when I started taking medicine for my diagnosis, so I went a year just kinda coping. I take pregabalin and duloxetine, and I was able to get a spinal cord stimulator, which I got in 2023. I have been able to lower the dose for those meds so that my brain isn’t as foggy. I am really thankful for modern medicine, I am thankful for prescriptions, but I am also thankful for less brain fog, and being here, being present and watching my kids.

BM: Because I don’t know anything about these medications, was there ever a concern on your part that they could become addictive? We have all heard about people becoming addictive to painkillers.

J: Yes. I was sent home with opioids first, to help me with my pain, and they did absolutely nothing. It didn’t help my pain at all. In Maine, medicinal medications are legal and I was able to use that until I could find a prescription that was suitable. The prescriptions came along after I met with the CERN Foundation, and my oncologist connected me with someone in the area that actually has the same diagnosis. Through a patient care program, we were able to connect. Then I was able to get my stimulator which has greatly improved my life. It took me a year to collaborate with my body, but it has been a life-changer for me. My reduced medication dosages ca be tied to my spinal cord stimulator. I opted not continue the opioids because they did not do anything, and the medication I am on now, I believe they are not in the opioid family. They are something else and they are very low-dose. Thankfully I have not been addicted to anything. I stop using medicinal medicine since I have gotten my stimulator. I have gotten off all that stuff, allowing me to be with my family and enjoy life through a different lens.

BM: So, it sounds like you have been making progress. How exciting is that?

J: It’s amazing. I remember laying in bed in 2021 and just crying because I was in pain, but crying because I feared my life was going to be confined to my bed and my couch. The real progress was when I found the National Pain Institute in New Hampshire and was able to qualify for a stimluator. My community rallied around me, and they did a Gofundme to help with the cost of different things that were happening and not many people have a stimulator. Mine is adjusted. Usually, it goes into the lumbar spine. It goes into the base, which is where my tumor was. I went to Boston to get measured that part of my spinal cord to make sure the stimulator to make sure it would be a good fit with all the other nerves there that are affected by breathing and swallowing. I have a battery located on my right side, just above my hip. That lasts for ten years. The stimulator goes from the top of my shoulder down to my lumbar and it gives electrical currents and deals with the pain so I don’t feel as much. I have different settings I can change it to. If I am having a ‘flare,’ which is a really bad day, I turn the stimulator to a different mode and I can actually feel the electrical current very gently, very softly in an organized pattern and it relieves the pain, over time. So, yes, life is improving. It’s amazing and you take for granted everything. I love being able to go to the grocery store, pick up ten things, which is my limit and be able to do a grocery shop. You know, playing my guitar. I have a hospital bed that reclines at the top and at the bottom so I can decompress my spine. I get some pillows around me and I can jam and play a few songs on my guitar and I am just thrilled.

BM: Jess, I want to talk about something you have already mentioned, but I want to come back to it. You referenced the CERN Foundation. Could you tell us a bit more about what it has done for you and what it can do for others.

J: They have a well-constructed website. It shows the different type of ependymomas and there are links for family members to help caretakers understand the invisible pain that their loved one is feeling. You can’t see it from the outside. It is all on the inside of that person’s nervous system, and I should just say that your nervous system makes you who you are. It’s your taste, it’s your sense of smell in terms of what you like and don’t like. For me, it is the breeze going to the ocean. The first time I went there without medication, the wind felt like shards of glass pressing up against my body. So, the CERN Foundation really rescued me. I felt isolated. They showed me that I am not alone. There are people, very few of us who struggle with this same symptoms. We echo it in different ways, but it’s all the same. We gather on Zoom. There is a special day. It is on the website, and you get to see the faces, and you get to hear the stories. At first, they were hard to listen to, but there is purpose in the pain.

BM: And if somebody wanted to check out the website, what is its address?

J: It’s https://www.cern-foundation.org. Kim Wallgren is the founder.

BM: Jess, we are about to wrap up, but I do want to highlight one other aspect of your journey. In addition to everything you have experienced, you aspire to become an author. Tell us more.

J: In 2022, when I felt like I would be confined to my house, a story resonated in my heart. I started teaching my body to sit for small increments of my time and I would jot down pieces of my story, which is a fiction story. It is going to be a children’s book to help a kid through trauma, telling people they are not shattered because of diagnosis and that there is a light at the end of the tunnel. My book is about any type of trauma that could occur.

BM: Jess, you have shared a wealth of information with us that can help to anyone facing this daunting diagnosis of ependymoma, and you have given them a great deal of hope. So, Jess, thanks for being with us on Cancer Interviews.

J: Thank you so much, Bruce. I love what you are doing. I think it is so important to share stories and have the information given by real people and not just doctors.

BM: Thanks, Jess. And we want to remind you as we always do when we conclude, that if you or a loved one are on a cancer journey, you are not alone. There are people out there like Jess and organizations like the CERN Foundation that can make the cancer journey a bit easier. So, until next time, we will see you on down the road.

Additional Resources:

Support Groups:

The CERN Foundation: https://www.cern-foundation.org

walk.talk.connect: https://walktalkconnect.org

Book:

ReConnected: Stories from Spinal Cord Tumor & Dawn Standera, available on Amazon

https://www.youtube.com/@reconnected-SCTtumorstories

SHOW NOTES

Jess, Ependymoma Survivor – Portland, Maine, USA

Additional Resources:

Support Group:

The CERN Foundation: https://www.cern-foundation.org