Shennea Dixon's Incredible Battle Against VHL
- Shennea Dixon was an active teenager, but her headaches and back pain turned out to be a symptom of something extremely serious: Von Hippel-Lindau Disease.
- VHL is a disease caused by a genetic mutation that can cause tumors and cysts to grow uncontrollably in the body.
- One of Shennea’s tumors was wrapped around her spine. After undergoing surgery, recovering her ability to walk was a challenge.
- Today, Shennea uses her story to inspire others diagnosed with VHL to find the strength to persevere.
Until then, she was an active teen like any other. She liked sports: she was an avid basketball, volleyball and softball player. She had an artistic side, which she showed off in musical theatre productions and in a show choir. Between the ages of eight and 18, she spent her summers at a camp in her hometown of Indianopolis, first as a camper and later as a counselor.
Read MoreThings go so bad that one evening, she went to the emergency room. Doctors ran scans, believing it was possible Shennea had cysts on her ovaries that had ruptured. But when the results of the CT scan came back, "they actually found two pretty massive tumors, which they said were on my right kidney."
"When the doctor came in, his face was pretty white. You could tell, he didn’t really want to deliver that news."
"I wasn’t very emotional. I’m a pretty nonchalant person anyway. And I chose not to panic until I got home and they actually figured out what was happening. They were pretty confident I had cancer at the time but once they told me that, I immediately went to ‘Okay, well, what’s the next step?’"
Getting Ready For The Next Phase
Shennea flew back home to see specialists at Indianopolis’ IU Health Simon Cancer Center. She, along with her mother, met with a specialist who told her the tumors weren’t actually on her kidney, but her adrenal gland. They couldn’t tell exactly how big the tumors were, so Shennea was told they wanted to operate to learn more, and quickly, lest complications begin to arise.
"They were like ‘We wanna open you up, essentially to see if it’s cancer ’cause they really didn’t wanna wait too long,’" she recalled. "That was a moment where I was like ‘Okay, this is a bit intense.’"
As they headed home, she managed to stay calm. But once she got there, she sat in her car and "I just started sobbing. I drove to this park and just kind of sat and cried and just got ready for the next phase."
Despite the strong emotions, Shennea underwent a successful operation to remove them. She moved on with her life, moving back to Alabama and finishing her ministry program. But a biopsy revealed the tumors were pheochromocytoma, which are not common. Further tests revealed her condition was even more serious than previously thought.
"With them being as rare as they are and as large as they were, they wanted to figure out why I got them. They started running a bunch of tests. That’s when they determined I had Von Hippel-Lindau (VHL), after they did genetic tests. They did scans in my brain and my eyes and my spinal cord and again of my abdomen. That’s when they found the multitude of other tumors that I had throughout my brain and spinal cord and within my eyes."
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What Is VHL?
VHL is a rare genetic disorder that can lead to the formation of both cysts and cancerous or non-cancerous tumors within the body. It occurs in only roughly one out of every 36,000 people and occurs when an autosomal dominant deletion mutation in the VHL gene occurs on chromosome three. This gene is a tumor suppressor gene, meaning when working properly, it keeps tumor growth 'in check.' When there is a mutation in this gene, it renders it unable to control tumor growth, which results in easier tumor formation. It only takes a single mutation in the VHL gene to cause the disease.
"I didn’t really grasp the seriousness of it. I was more focused on, ultimately, I wanted to live in Alabama, so I need to find a job," Shennea said with a laugh. "I need to enroll in school. I need to just really establish my life here. I probably don’t take things as seriously as I probably should. I’m not sure, but I really was just focusing on my life. When you’re young, 18, 19, 20, you think you’re invincible anyway."
She began travelling back and forth between Indianapolis and Alabama to receive treatment as the reality began to set in.
"It went for me from having this obscure, rare disease that nobody knows about to, now, it’s tangible in a sense. Life, if there’s visual proof of brain tumors, spinal tumors, tumors in your eyes, which can be a bit overwhelming."
There were other considerations that needed to be taken into account: as she tried to come to terms with her disease, Shennea also realized she needed to figure out her health insurance.
"That is, I believe, when there was a pretty significant shift in my mindset and, ultimately, just survival mode and trying to establish a life that essentially focused around my health and these appointments and tests and medical bills," she said.
Doctors told her that tumors in her brain and spine were located in places too risky to go in and remove them. Instead, they would be left unless they began to cause problems.
"Essentially, it was always in the back of my mind. They weren’t causing enough problems to warrant having surgery. SO it was just constantly in the back of my mind that I had these tumors and over time they did begin to grow and start to cause symptoms… The only thing I could do was continuously get surveiled with constant MRIs. Just looking in hindsight, mea dealing with all all of this, it was just a matter of ‘Okay, what’s next? I gotta survive.’ I come from a long line of strong, independent women and it wasn’t gonna stop with me."
What Are the Symptoms of Von Hippel-Lindau Disease? Know The Signs Of This Rare Genetic Disease
A Trip To Remember
Over the years, as the tumors grew, the symptoms began to get more severe. When she was around 23 or 24, the headaches and back pain got worse. Her eyes would bleed frequently to the point where she could lose vision for days or weeks.
"I was to the point where I worked a very good job. I had moved into a condo and was pretty comfortable as far as my life was concerned but, ultimately, my quality of life and function had just diminished so much."
After one flareup, she went to the ER and was admitted for several days. She was supposed to head out on a cruise. With the trip already paid for, she decided to head out to sea.
"I knew they really werent’ going to be able to do anything other than giving me steroids and just try to get the swelling to decrease. I chose to go on the cruise and I hadn’t slept for maybe two days before because I couldn’t even lay down. I couldn’t get into any comfortable position at all. The entire time (on the cruise) I was trying to take miniscule amounts of pain medicine."
One day on the trip, while at the beach, she decided to go for a walk. As she looked for seashells, she had a sudden realization that her health was getting worse.
"I’ve always been a big water person. I’m a Pisces, I love the water and one of my favorite things is just feeling the sand in your feet. In that moment, I decided to take a video of me walking in the sand. I was incredibly present and grounded. I decided to take in that moment of just what it felt like, how I was feeling, how the water felt, how the sand felt. That’s one of the things I miss the most now that I do have a disability and can’t really feel my feet."
As she returned home, the symptoms continued to worsen. While she could still walk, the pain was excruciating. She was doing her own research and discovered the VHL Alliance. Through them, she learned of comprehensive VHL care centers, where all the specialists needed to treat the disease work under one roof. She transferred her care to Vanderbilt in Nashville where, at one appointment, she was told a tumor on her spine had grown significantly and intertwined with her spinal cord. She was told it a wonder she still had bowel and bladder function and was still able to walk. If the tumor wasn’t removed, she was told, she would end up paralyzed.
"That was quite a shock because for years, it was just, I go to the hospital and I get my scans. ‘Your tumors have grown a little bit but your symptoms aren’t bad enough, come back in six months.’ All of a sudden it was like, ‘No, you need to have surgery before the end of the year,’ and it was October."
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A Difficult Recovery
She packed up her life in Alabama and moved back to Indiana. On Jan. 5, 2015 the tumor around her spinal cord was removed. When she woke up, her reality had changed once again.
"I couldn’t use my legs, essentially. Prior to me going into surgery, they were relatively confident it was going to take about six months for me to bounce back because I was still walking and functioning. They were just not expecting me to have such significant deficits when I woke up."
When she spoke to her doctor, she was told she had bled a lot during the surgery and the procedure had been more complex than they had initially thought it would be.
"I had that tumor for so long that it makes sense it was likely incredibly complex," Shennea said. "Everything was just up in the air and they just said, ‘You start rehabilitation.’"
She stayed in a rehabilitation hospital for two-and-a-half months, where she learned to stand and walk with crutches but was reliant on a wheelchair. She had to relearn other things, too, like how to use the bathroom. Still, she kept a positive attitude.
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"I tried to see everything half full, as much as I can. I knew in that moment when I was in the rehabilitation hospital, it kind of kicked my competitiveness, the athlete in me, the hustler in me knew I needed to work as hard as I possibly could in order to yield any type of results I would want."
While Shennea acknowledges there were some dark days where she battled negative emotions, she knew she “had to give everything I could. I knew I had to push myself as much as I could.”
Shennea’s Advice For Others
Despite the adversity she’s faced, Shennea has managed to keep that positive out look. Today, she hopes her experience can help others who receive the life changing news of a VHL diagnosis by sharing what she’s learned.
“The best advice I could give anyone that’s diagnosed with VHL would be that you have to be an advocate for yourself,” she said. “You have to stand up for yourself and not be afraid to ask questions.”
She recommends that others seek out the VHL Alliance, the group that helped her find the treatment she needed, as well as VHL support groups on Facebook.
“Just seeing there’s other people going through this as well has helped me just realize that, even though I don’t necessarily know these people personally, there are other people going through what I’m going through,” she said.
What Are The Treatment Options For Von Hippel-Lindau VHL Disease?
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