The Importance of Advocating for Your Health
- Tahlia West, a 27-year-old therapist in Melbourne, Australia, experienced a variety of concerning symptoms such as dizziness, fatigue, cognitive issues and migraines for an entire year and was told she had an ear infection, but it wound up being a rare brain tumor.
- Because she pushed for answers, Thalia found out she had a pituitary tumor pressing on the base of her skull.
- A pituitary tumor develops in the pituitary gland, which is a small gland located in the back of the nose. Though the current plan is to monitor the tumor, Thalia has peace of mind of knowing what was causing her health issues.
- When you see a doctor for a problem, don’t hesitate to make sure that your question is fully answered and that you are comfortable with the plan moving forward. From a doctor’s perspective, every problem should have a diagnosis, a treatment plan, and a plan for follow-up.
After seeing multiple doctors, the Melbourne, Australia, native finally found out she had a pituitary tumor, specifically, a Rathke cleft cyst, near the base of her skull. A pituitary tumor develops in the pituitary gland, which is a small gland located in the back of the nose. A Rathke cleft cyst is a benign, or non-cancerous, fluid-filled sac that may cause loss of hormone function.
Read MoreUnusual Symptoms
Tahlia had also developed cognitive issues out of nowhere. “I suddenly had a really bad memory,” she said. “I’d forget the most basic things one day — and the next I’d be fine.” RELATED: Doctors Told 42-Year-Old Dad His Fatigue Was Long COVID, But It Was a Brain Tumor: Knowing the Signs“I didn’t really get to dwell on it much because there was always something else going on, like my migraines,” she continued, noting that her pain is “worst in the morning and late at night,” and sometimes occurs with hot and cold flashes, along with “bouts of blurry vision I couldn’t understand.”
Since Tahlia had sudden loss of hearing on one ear, along with a “wet” feeling in her ear, her general practitioner suspected an ear infection and sent her to a specialist, who told her “nothing was wrong” and “sent me on my way,” she said.
Thankfully, her original provider was determined to get to the bottom of her condition and eventually ordered an MRI, which is how Tahlia discovered she had the mass.
Learning Her Diagnosis
“I was in denial about it for a while,” Tahlia said. “I didn’t want to believe it.”
“Knowing there was something growing on my brain was so overwhelming and terrifying,” she added, and unfortunately, she had to wait another few months to see a neurosurgeon.
After undergoing more tests, Tahlia was told that the surgical risks were not worth removing it, which is common in many cases with these types of tumors. Instead, she is monitored every few months.
“I cried then and I was scared because I didn’t understand a lot of it. I felt very alone. My condition is very rare, and not many doctors know about it.”
With no treatment currently able to help her, Tahlia, who hopes to have kids some day with her partner, is just trying to live life as normally as possible, despite the intermittent symptoms, which still cause her great pain. But at least she knows what is happening to her body and why she is experiencing the symptoms, which can provide a certain sense of comfort.
Tahlia is sharing her story to encourage others to seek medical help. “By sharing the warning signs, I’ve been able to create a community and make friends who are in the same boat as me.”
Focusing On Mental Health Through Health Challenges
As a therapist, Tahlia knows that taking care of your mental health while you are going through serious health challenges is very important.
People may turn to many different avenues to help them cope, such as traditional therapy, support groups, meditation, and sometimes medical intervention such as antidepressants. When faced with a new challenge, it’s important to make sure that these coping mechanisms you have to care for your mental health continue to work throughout the process.
“I think flexibility is really a core of how to manage it,” Dr. Samantha Boardman, a New York-based psychiatrist and author, told SurvivorNet in an earlier interview. “Are your coping strategies that you’re using now, are they helpful in the way that they were in the past?”
Coping with Mental Health Long-Term
Dr. Boardman encourages people who may be struggling with their mental wellbeing to take stock of their belief system and ask themselves the following questions:
- Could these beliefs be harming me (like feelings of self-doubt or negativity)?
- Is my mindset holding me back from positive steps forward?
Dr. Boardman suggests working to recognize any negative thoughts that may be making the process more difficult, and trying to dismantle those thoughts (that can be contributing to further stress on the body).
Speak with your doctor about a referral to a mental health professional and understand that it can take time to find the person who is the right fit for you.
Advocating for Your Health
When it comes to your health, be a little pushy. You know your body better than anyone else.
When you see a doctor for a problem, don’t hesitate to make sure that your question is fully answered and that you are comfortable with the plan moving forward. From a doctor’s perspective, every problem should have a diagnosis, a treatment (or exploration of options to ease symptoms as in Tahlia’s case), a plan for follow-up, and a plan for what happens next.
As a patient, if you don’t feel like each of these four things has been accomplished, just ask. Even if it requires multiple visits or seeing additional providers for a second opinion. Like Thalia, always be your own advocate.
Be Pushy, Be Your Own Advocate — Don’t Settle
“Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn’t work, what the next plan is,” Dr. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, told SurvivorNet in a previous interview.
“And I think that that’s totally fair. And me as a health professional, that’s what I do for all of my patients.”
What Causes Rathke Cleft Cysts?
Rathke cleft cysts, according to John Hopkins Medicine, have no outside causes from what is currently known. These slow-growing sacs are thought to form during fetal development, growing in a small space at the base of the brain.
What are Symptoms of Rathke Cleft Cysts?
Rathke cleft cysts can press on nerves from the eyes to the brain, causing vision changes and other symptoms including:
- Frequent headaches
- Nausea
- Fatigue or feelings of drowsiness
- Confusion, and changes in personality or behavior
The cysts can also affect the body’s hormones that are secreted by the pituitary gland, causing symptoms such as:
- Lack of growth or late puberty in children
- Irregular or absent periods
- Production of milk from the breasts or leakage not related to pregnancy
- Low blood pressure
- Constipation and other digestive issues
- Low to no libido
- Extreme thirst
- Dry skin
- Obesity
- Difficulty regulating body temperature
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