A Remarkable Story of Pain, Invisibility, Courage, and Healing

Name: Leta M.
Type of Cancer: Ependymoma
Diagnosed: 2023
By: Leta M.
— Categories: Adult Brain Spine

Physical Symptoms From a Young Age

Looking back I had symptoms from age 5 to 12. I had debilitating migraines where I would vomit every few months. I had severe motion sickness when in the car; after 30 minutes I would vomit and get so dizzy I had to lie down. Balance and coordination were also a slight issue. Around 14/15 is when the pain in my upper back area began, around the C4/5/6 area—a deep pain in that area that increased slowly as I aged. Along with severe neck pain up to my occipital area on the left side of my neck. As those pains deepened around my early 20s, the shooting pain up my neck on the left would come and go. It was debilitating, yet it would happen 2 to 3 times and then months went by without that shooting pain. Other symptoms I experienced in my early thirties included getting nauseated and almost fainting randomly, choking while drinking, and my voice lowering to a whisper when trying to speak. Similar to before, I experienced short bursts of shooting pain and then I would have long intervals in between with no pain.

A Long Road of Pain and Unanswered Questions

Things changed in March of 2022 when a different kind of pain started in my rib cage; it felt like something was squeezing my ribs, and if I started to walk fast, it felt like I was getting punched in my gut. I later found out that it was diaphragm spasms. The rib cage pain became so intense I wasn’t able to get out of bed for 5-6 days straight, and then it would go down to a somewhat tolerable level. I also had urinary incontinence issues that would fluctuate from severe to mild depending on how much pain was in my rib cage. At that point, I sought help, but was told I had costochondritis and was given naproxen. I saw three different doctors at two emergency rooms over the next few months and one private doctor who also brushed me off as being overresponsive to pain from, again, costochondritis. I was given a new family doctor at the local clinic in my hometown in November, 2022. I explained to her how I felt as if I was dying and couldn’t explain how or why. She gave me multiple chest X-rays, all of which were clear, yet things were getting worse. She thought I might be having a pulmonary embolism and sent me for CT scans. Again, they were all clear. The doctor who performed my CT scan said that I might never find out what’s actually happening to me. The pain was still getting worse, and I began limping in late November. She had me taking naproxen and Cymbalta. Both did absolutely nothing. She then sent me for an X-ray that showed herniated discs, severe spinal stenosis, osteoarthritis, and spondylitis throughout my spine. After that, she was able to send me for an MRI for my spine and brain for suspected multiple sclerosis.

I did the first MRI in early February, 2023, and three days later she called me with urgency and said that they found a cyst on my brain and that I would need surgery. The doctor didn’t know what type of cyst it was and was sending me to a neurologist in a few days. When I arrived at the neurologist’s office, he was upset that I was sent to him and said I should’ve been sent to a neurosurgeon. I was absolutely desperate. I begged him to help me. He then looked at my file and said, “Well, you did your MRI here. If you wouldn’t mind waiting, I’ll go over it with you and we’ll discuss what we can do after I see my patients this morning." My limp had now turned into me having to touch walls for support because I felt so off-balance. Once he opened up the MRI and we saw it, he put his hands over his mouth and looked at me and said, “Your whole spinal cord is compressed. I’ve never seen anything like it. That’s not a cyst on your brain, it’s in your spinal cord.” He then called a neurosurgeon from a different hospital, explained the situation, and said to me that he would be calling me the next day to discuss what was going on in more detail.

Finally a Diagnosis and a Plan for Surgery

The next day I got a call from the doctor. At that time was the first time I had heard I had a tumour in my spinal cord. When I first heard the word “tumour”, it was like time stopped (tumour = cancer). I was panicking, I was scared. He asked me how I felt, and I explained to him my symptoms and how intense they were. He said, “My only question to you now is, do we have time to do some tests and evaluate you for a few days, or do we get you into surgery this weekend?” I said we have the time. I knew something big was happening, but I wanted to have that weekend at home with my children. They were 15 (daughter) and 17 (son). At that time, even though he said I had a tumour, it didn’t compute. I was in shock or denial or both.

On February 14, 2023, I was admitted into the hospital, where my neurosurgeon explained to me that I had an intramedullary spinal cord tumour and what I saw on the MRI was actually the cystic part of the tumour. The tumour itself was from T2 to C4. The cystic component was all the way up to my left brain stem and down to my T12 area. He explained how it is the rarest type of spinal cord tumour, and at that time he was not able to say if it was cancerous or not until pathology was done. He said they are usually ependymomas. He explained to me that if we didn’t take it out as soon as possible, I was going to be 100% paralyzed.
The doctor said that he had never done the surgery before and in his 12 years as a neurosurgeon, I’m the first patient he’s seen with one. However, he expressed confidence that he and his team would be able to remove it regardless of if it was his first time. First priority was to try and get a complete removal of the tumour and cyst. After, treatment could possibly include chemo or radiation, or maybe not, and we would watch it and see what would happen if a full removal wasn’t possible.

During that week in the hospital after being evaluated, I was being prepared to be woken up as a different person. He said I most likely won’t be able to breathe, eat, or speak after the surgery and will have to relearn how to do all of those things. I will have to relearn how to use the bathroom and how to walk as well, and I might not even have the same personality. There’s not enough research to know what happens to a person when the spinal cord is operated on.

I had to make plans with my family for how long to keep me on life support if I was brain dead and get prepared to be fully paralyzed, but there was also a chance I might be able to walk again too. I remember being told that the surgery was 50% and my dedication to recovery was the other 50%. At that moment, the last thing I wanted was to be physically disabled, and I signed an agreement to move forward with the laminectomy and spinal fusion for my kids' sake. Part of me wanted to live, but live with the possibility of being permanently disabled? I didn’t want that at all, and even though deep down I knew I’d walk again, I was terrified. I tried to find a second opinion in the days leading up to that surgery, but after speaking with three neurosurgeons in the Montreal area, all said they don’t take spinal cord tumours because they are too complex. I knew I had to go through with the surgery with this surgeon. He really wanted to save my life, I felt, but I also felt like his experiment as well.

I have to add I was dedicated to a healthy lifestyle. I felt as if I was the healthiest I’d ever been. I trained 3-5 days a week prior to the debilitating rib cage pain that began in March 2022, and on days where I wasn’t in that much pain, I did continue to train all the way up until a few weeks before being admitted into the hospital. I find it interesting that although the tumour was compressing my spinal cord, my body was physically able to improve in all areas at the same time. I felt like I had been training all those years leading up to this in order to be able to go through it. If I were in any other type of shape, I don’t know if I would be where I am today in my recovery, and I am so blessed and grateful for that.

Processing, Recovery, and Healing

I was still trying to comprehend what I was going through and that it’s possible I might’ve had this from a young child and no doctor will ever be able to tell me when it began. I desperately began searching for other people who had this to find nothing. The information I was getting was that it’s a medical mystery how intramedullary spinal cord tumours are formed until I came across the CERN Foundation and was able to read the stories of others who had gone through what I went through, and to this day, it is still the only place I’ve been able to find others to share stories with. I also reached out for referrals, but because I am in Quebec, Canada, the doctor they referred me to was in another province, and I was not able to obtain them as my doctor.

On February 21, 2023, I went into a 16-hour surgery to remove the tumour and fuse my spine. When I woke up, my neurosurgeon said that they were not able to remove it all because if he had attempted to remove any more, he was sure that I would’ve been paralyzed and he wanted to give me a chance at being able to walk again. The first pathology was done right after removal and came up inconclusive. They would need to send it out to have a second pathology done and they didn’t know how long it would take to receive those results. Weeks later in March, my surgeon told me that it was an ependymoma grade 2 and we would be doing MRIs to watch if anything changed. If the remaining tumor showed signs or growth or recurrence, I could choose to do radiation and/or chemotherapy. After a few hours of the anesthesia wearing off, I realized I wasn’t able to feel my trunk/core, and it seemed as if my whole body from the neck down basically was vibrating with huge electric-like volts running through my back down my core into my legs. My left hand felt as if each finger was the size of a sausage, but I could move my arms. The feeling of them being there was definitely not normal, but I could move them. When I attempted to move my legs, they did move, but didn’t do what I wanted. I also had severe spasticity, so although I could move, I had absolutely no control over the movements. They had to tie my legs to the wheelchair so they would stay down in the first few months after surgery.

It felt like when you’re in a body of water and your legs start floating to the surface, I had to keep looking down at my body to make sure that my waist and my legs weren’t floating up in the air. It almost felt as if I had to consciously hold myself down to the hospital bed because my legs and core were floating up. The sensations running through my legs and my lower body were very intense—a constant vibration, like I was lying on some kind of engine that was running, accompanied by electric bolts that would just zoom down, bolting through my legs to my feet. I spent approximately one and a half months in the hospital and ended up having a second surgery to extend the spinal fusion from T2 to C4 to T3 to C4 and went into a rehabilitation adaptation centre until mid-June 2023, when I read my pathology report at home. I was shocked to see the report showed signs of ependymoma grade 2 and astrocytoma, but pointed more to the ependymoma. However, they can’t say 100% exactly what it is/was. This helped with the very tough choice of either doing or not doing chemo/radiation. What also helped was reading the stories of others on the CERN Foundation website.

Discussions, Choices, and Looking Ahead with Appreciation

I made the choice to keep an eye on the tumour and not go through with radiation or chemotherapy. I’m blessed to say what’s left of the tumour has been stagnant and stable since surgery. I had nurses, therapists, and my family doctor all look at me like I was throwing my life away for not wanting to go through with those treatments. I had struggled with pain my whole life and was now not able to walk. I was concerned I would get more pain and more permanent damage to my spinal cord with radiation and chemotherapy. I have to say it’s the best choice I’ve made. I feel great. Yes, I have issues of incomplete SCI daily; they fluctuate from minor to severe. I have now regained the ability to walk and am still to this day regaining sensation, balance, and coordination. I’m doing things that I once thought I might never do again, and I will keep moving forward each day with immense gratitude for being alive. Each day is the GREATEST day of my life, just because I’m still alive.

In April 2023 an MRI that showed the cystic liquid component was returning in the C6 area after having been removed after surgery. My family doctor at the rehabilitation center was very concerned and encouraged radiation treatment. Since it was not causing any extra symptoms, I decided to just keep an eye on it with routine MRIs. Growing up in Kahnawake, using natural plant medicines and participating in ceremonial practices my whole life, is very important to me and I strongly believe there are natural remedies for healing mental, emotional, spiritual, and physical illness. In July 2023 I began a natural course of treatment with functional mushrooms and used this combination for approximately nine months. In November, I began taking traditional natural medicines provided for me by Kanien’kehá:ka, knowledge holders and healers from my neighbouring community, Akwesasne. I fully committed myself to this process. Subsequent MRIs showed the liquid moving down my spinal cord was shrinking and moving down my spinal cord and was not detectable on the Dec 2024 MRI scan! I am currently still taking natural medicines and will be doing yearly MRIs to keep watching what's left of the tumour and to make sure there are no recurrences.

This diagnosis has set me free in a way I could have never imagined. I appreciate my body in a way I never could have before. I appreciate life, people, and the beauty of what’s on the other end of great suffering. Life is so precious and each moment is a gift. I am so grateful for the support of my children, family, and all the people who shared their experiences with the CERN Foundation. Reading the Inspiration Stories not only gave me hope of a life after diagnosis, it made me feel like I’m not alone in a very isolating situation.