Home Australia I had specific and unusual symptoms for 12 months before I was diagnosed with a brain tumour – and now I could go blind at any moment

I had specific and unusual symptoms for 12 months before I was diagnosed with a brain tumour – and now I could go blind at any moment

by Elijah
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Tahlia West was rejected time and time again by medical professionals when she complained about her variety of painful symptoms.

Tahlia West was rejected time and time again by medical professionals when she complained about her variety of painful symptoms.

I had chronic dizziness, fatigue, memory loss, and an endless stream of migraines; However, the best diagnosis doctors could make was a persistent ear infection.

But after going back and forth to specialists for almost a year, Tahlia finally received a diagnosis: a rare pituitary tumor called a Rathke cyst was pressing on the base of her skull.

It’s incurable but you’ll be fine if the tumor doesn’t grow. If so, there is nothing you can do about the resulting symptoms.

The Melbourne therapist, 27, revealed she sometimes feels overwhelmed by such extreme tiredness that she falls asleep in the middle of a task.

“I always feel a lot of pressure inside my head,” Tahlia told FEMAIL. “It’s like someone wrapped rubber bands around my skull and they were too tight.”

Tahlia West was rejected time and time again by medical professionals when she complained about her variety of painful symptoms.

While waiting for doctor appointments and test results, Tahlia’s symptoms only worsened.

“I suddenly had a very bad memory,” he said. ‘One day I would forget the most basic things and the next I would be fine.

“I couldn’t really think about it much because there was always something else going on, like my migraines.

‘The pain is always worse in the morning and late at night. “Sometimes it is accompanied by hot flashes and attacks of blurred vision that I couldn’t understand,” she explained.

Chronic dizziness, fatigue, memory loss and an endless stream of migraines; However, the best diagnosis doctors could make was a persistent ear infection.

Chronic dizziness, fatigue, memory loss and an endless stream of migraines; However, the best diagnosis doctors could make was a persistent ear infection.

Tahlia became very good at identifying her triggers and avoiding actions that she knew would lead to painful episodes.

She believes her GP initially suspected her ailment was an ear infection because she experienced a sudden hearing loss on one side and had a “wet” sensation in her ear.

“He said that was creating all the other symptoms, so he sent me to a specialist, which took a few months.”

“But the specialist told me that I had no problem with my ears and sent me on my way.”

The 27-year-old therapist from Melbourne. [pictured left] revealed that she sometimes feels overwhelmed by such extreme fatigue that she falls asleep in the middle of a task

The 27-year-old therapist from Melbourne. [pictured left] revealed that she sometimes feels overwhelmed by such extreme fatigue that she falls asleep in the middle of a task

Tahlia was especially disturbed because she had suffered from ear infections all her life and knew her symptoms were a sign of something more sinister.

‘Why do they tell me nothing’s wrong when I clearly feel bad?’ she remembered she had thought.

Tahlia returned to see her doctor, who was now focused on solving the problem.

While waiting for doctor appointments and test results, Tahlia's symptoms only worsened.

While waiting for doctor appointments and test results, Tahlia’s symptoms only worsened.

“I really felt like he cared about me; we tested for a lot of things, including diabetes.”

“The lightbulb moment came when I revealed that I couldn’t bend over without getting a headache.”

After having an MRI, doctors found an intercranial mass in Tahlia’s head.

“I denied it for a while,” Tahlia admitted. ‘I didn’t want to believe it. Even when I told my partner, I tried to ignore it.

“I think I finally understood when I told my parents: that was the first time I was afraid.”

“Knowing that something was growing in my brain was so overwhelming and scary, and I hated having to wait a few months to see a neurosurgeon.”

She then had to undergo more scans, check-ups, eye exams, MRIs and blood tests.

“After all that, the doctor told me: ‘It’s there, I can have surgery, but at this moment the risks outweigh what is happening now: it will make everything worse.’

While Rathke cleft cysts are usually asymptomatic, in rare cases patients have been known to develop Tahlia problems and even lose vision due to restricted oxygen flow to the occipital lobe.

“Then I cried and got scared because I didn’t understand much of it. I felt very alone. “My condition is very rare and not many doctors know about it,” Tahlia added.

“It was very frustrating and there is no treatment they can give me.”

But despite that, Tahlia chose to take a positive attitude toward the situation and do the best she could with what she had.

She did a lot of research online about the condition and tried to find online support groups, of which there was only one on Facebook.

‘There’s really nothing the doctors can do about it. I just go back for scans every three months so they can monitor the cyst.’

Tahlia shared that she was grateful for her family and friends who act as her support system.

Tahlia shared that she was grateful for her family and friends who act as her support system.

Tahlia shared that she was grateful for her family and friends who act as her support system.

“Everyone around me is wonderful, I’m truly blessed,” she said. ‘My parents, my grandparents, my partner, my mother-in-law… someone always comes to appointments with me.

‘If I’m having a particularly bad day, I know I can always close my eyes and my partner will take care of the house. It’s the little things that really matter.

“My mother has also been helping me investigate the tumor and it’s really reassuring to know for sure that one of them will come to check on me when I’m sick.”

Despite the diagnosis, Tahlia is determined to keep her head up and see the bright side.

‘I really don’t like self-pity and I don’t want my condition to affect my life any more than it needs to. I still work and study full time, but I take days off if I need them.

“Besides that, even if I’m in a lot of pain, I live my life as normally as possible.”

Tahlia shared that her hobbies went a long way toward keeping her sane during difficult periods.

She likes to go shopping, go on dates with her partner and go to the gym.

Tahlia shared that her hobbies keep her sane during difficult periods.

Tahlia shared that her hobbies keep her sane during difficult periods.

Tahlia has done her best to look to the future and focus on her 10-year plan.

“I want to have kids and pets someday,” she said. ‘My partner and I really want to have children in the future. It’s very scary, but I don’t think it’s worse than what a normal person feels. what a person without tumors would feel.’

She began sharing her story online and posting about her brain cysts on social media to raise awareness about the tumor.

‘I don’t want them to feel sorry for me, I want them to recognize when something is wrong and seek medical help. By sharing the warning signs, I have been able to create a community and make friends who are in the same situation as me.’

Several people brought their symptoms to doctors and were diagnosed thanks to Tahlia’s posts and videos.

“Talking to people online and keeping them updated about my journey is the way I cope with my illness,” she said.

Tahlia is currently participating in a clinical trial for migraines in an attempt to control her symptoms because she had been taking Panadol and Neurofen every day.

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