May 04 2014

Chelsea Grant’s Story

Age: 38

City/State: Seattle, WA

Type: Intramedullary Ependymoma Grade II

Surgery: July 2013

Chelsea Grant’s Story

My name is Chelsea Gant, I was diagnosed with a grade II Intramedullary Ependymoma last year (2013) at the age of 38. I am from Seattle Washington.

Last March was the happiest time of my life. I had only been married 8 months and my husband and I were trying to get pregnant with our first baby. We were committed to an intense workout program to get in the best shape of our lives before I got pregnant. We were so excited for what the future held, and nothing was going to get in our way.

Onset of Pain
So about 6 weeks into our workout program, I woke up one day with horrible back pain. I had called my husband who was out of town and is also a physical therapist, to tell him about my back pain. The pain was coming from around my left shoulder blade and radiated across my entire upper back. It felt like a burning sensation and seemed to be worse at night, sometimes waking me up in tears. So after he got home he tried everything he knew to alleviate the pain, with minimal success. Then we went to see my family doctor and we were told it’s probably a muscle strain, and she gave me some muscle relaxers. I also went to a massage therapist, chiropractor, and another physical therapist (my husband wanted me to see) who did some dry needling techniques. It took about 3 weeks to finally see some relief.

Fast forward to the middle of June… My husband and I were on a short weekend away with some friends when the pain came back with full vengeance. We left our trip early because I was in so much pain and we were able to get in with the Dr. the very next day. Again, The Dr. didn’t seem to think it was anything other than a pulled muscle. My husband “argued professionally” against this repeat diagnosis. My husband requested and the Dr. agreed to order me a X-Ray, and put me on some strong anti-inflammatories. The X-ray results were negative, and the new medication wasn’t helping me any better. Actually I was still waking up in the middle night crying in pain. So back to the Dr. again! This time my husband pushed his concerns and made a very strong case using a bunch of fancy medical talk – that this was not a muscle pull! My symptoms didn’t seem to match up. He also let her know that we are about to start fertility treatment to try and have a baby, and didn’t want to move forward until we knew exactly what was causing my pain. We were tired of treating the symptoms and wanted to treat the problem! So we asked for an MRI. With a little hesitation the Dr. agreed.

Diagnosis and Surgery
So a few days later on June 30th, 2013 I went into have my MRI. We thought they would tell us I had a disc injury or something along those lines. I went in that day by myself because my husband was on a motorcycle trip. Who knew what we were about to find out.  As soon as the MRI was over I was told by the tech that I needed to be taken to urgent care. I immediately started to panic, because I knew this had to be something bad. When I finally was able to meet with the Dr. I asked what is wrong with me? He replied “you have a tumor in your spinal cord”.  As scared as I was before meeting the urgent care doctor – I never imagined that as a possibility. This was the most horrific thing I could ever imagine hearing. All I could think was – Am I going to die? I had to call my husband who was about 4 hours away on a guys motorcycle trip, and break this horrible news to him.

We were set up to meet the neurosurgeon the next day, which wasn’t soon enough in my opinion. He explained things with great detail – which we wanted, but at the same time caused us more fear and anxiety. I want to quickly acknowledge my surgeon here – he was amazing! Besides being surgically/technically gifted, he had a great beside manner and we felt completely confident in him after the first couple of minutes. After showing us the MRI,  my husband had to hold back tears because he knew from a medical stand point, that based on the location and the size of the tumor – the severity and risks associated with the surgery were huge. I on the other hand, was a little more naive and ignorant to what I was seeing. We were told the tumor was 5 1/2 inches long, beginning at C-4 extending down to T-4 and would have to be removed. How soon was the question? The surgeon told us that his schedule was completely full for the next two weeks, but he had already talked to his partner (after seeing my MRI that morning) and they were willing to open up the operating room for the 4th of July (in 3 days) – if we didn’t want to wait. We would be the only surgery that day, and he had to gather a team of people on a holiday to come in and remove my tumor. What an amazing man!

So my surgery was scheduled on July 4th 2013. My husband and I had 3 days of waiting to see what my fate would be. The surgeon told me that I would definitely have some type of neurological deficits. Paralysis of both my arms and legs, difficulty with balance and walking if I was able to walk, but also a possibility and my biggest fear – dying.

My surgery took more than 7 hours… All I remember when waking up was the surgeon asking me to move my hands and toes. Though I couldn’t do much more than that, I was very happy with that for a start. More than anything, I felt so extremely grateful that I survived the surgery! I was so excited to have my husband and my family waiting there to see me. We were told that they were able to get a total resection of the tumor (It was a grade II Ependymoma). We found out shortly later thanks to a successful surgery, I wouldn’t be required to have any radiation or chemotherapy. My total time in the hospital was 11 days. 1 day ICU, 3 days on the neuro wing, and 7 days inpatient rehab. On a special side note, therapy (both inpatient and outpatient) was a critical component to my recovery and where I am today.

Where are we now
Today I’m happy to say I’m 8 months post surgery and back to life in my “new normal” body. I still have (and most likely have for the rest of my life) numbness from my chest down to my toes. My balance and proprioception are great, but a lot of hard work and dedication was put into that and will always be a work in progress. Most importantly, my husband and are back to trying for our first baby.

This experience was truly eye opening. I’ve learned to not take life for granted, and to live each day to the fullest. I thank God for all the blessings in my life, especially my surgeon for his gifted hands and my husband for all his love, support and patience.