Health & WellnessLifestyles

Zakiya’s meningioma tumor battle

Doctors say doing nothing is not an option; crowdfunding to assist with medical expenses

Zakiya Butler has days when she throws herself a pity party. She asks why can’t her life be easier …simpler. She also goes through times when she recognizes that she has to play the cards that she’s been dealt and accepts that the life she has is the one she has to live. So, she allows herself a good cry on any given day when she feels like she needs it, with the realization that she has to get up the next day and keep it moving.

Butler has every reason to throw one of her pity parties after learning that a meningioma – a tumor that arises from the meninges – the membranes that surround the brain and spinal cord – that she had growing on the left side of her cranial cavity, and had for the most part removed, has regrown and is affecting vision in the only eye that she has sight. She is scheduled to have surgery on September 2 to once again have a portion of the tumor removed. Butler, 41, believes her upcoming surgery is more important than her first surgery.

“This is even more important as I am blind in my right eye. The doctors are recommending surgery once again, this time to remove the tumor’s portion touching the optic nerve. This will then allow the possibility to do radiation to stunt the future growth of the tumor.”

Doing nothing is not an option. Her doctors have told her that if she does nothing, her sight will get worse. Butler hasn’t driven in a year and a half due to her impaired sight.

“They’re adamant that I do the surgery.”

It was on July 11, 2017, that Butler learned that she had an eight-centimeter meningioma growing on the left side of her cranial cavity, rooted behind her left eye.

Although not technically a brain tumor, meningioma is included in the category because it may compress or squeeze the adjacent brain, nerves and vessels.

“In my case, given its size, this is exactly what it was doing – compressing both the brain itself and essential nerves, notably those connected to my left eye.”

The “silver lining of this storm cloud” of news for Butler is that the tumor is grade one, and is the most benign, non-cancerous type of tumor.

Meningioma is also the most common type of tumor that forms in the head.

Six years ago, Butler sought treatment for a horrible headache; she was referred to a doctor in Miami, Florida, for further treatment. She traveled on July 12, 2017 for a consultation with the doctor. Fate had it that she lost consciousness on the morning of July 13, 2017, the day she was supposed to meet with the doctor, and had to be rushed to the hospital. The doctor had to perform emergency surgery. They removed a significant portion of the tumor but when they got to the root, Butler started to bleed; they cut the surgery short, leaving a piece of the tumor.

Most meningiomas grow very slowly, often over many years without causing symptoms. Butler’s doctors have told her that her tumor has probably been growing since her teenage years, before it was discovered.

Since that surgery, she has had annual monitoring of the remnants of the tumor. It had remained stable with no growth, until this year.

“When I did my annual MRI, I learned that the tumor has doubled in size since last year. Though nowhere near the size it was in 2017, in its miniature state, it is touching delicate nerves, notably the optic nerve behind my left eye, and it is affecting my vision,” she said.

“We don’t know what’s triggering the growth, and this is scary,” she said.

With surgery scheduled for a little over two weeks, Butler has taken to crowdfunding via GoFundMe to assist with raising the funds needed to help in defraying the cost of her vision-saving operation as well as other recuperation costs.

“I am a mother to two amazing boys, an asset manager and advisor, a personal trainer, a fitness competitor, and an overall life achiever. While I have faced tough challenges all my life, I have done so with faith, grace, bravery and, most importantly, the support of loved ones. My fight in life is driven by my desire to raise my sons [Solomon, nine, and Zion, two] and contribute to all that is good in this world.”

Up to May 2021, her annual MRI results showed she was fine. When she checked in with the doctor for her follow-up appointment, she told him of having bad headaches and of her vision worsening. Her notes said the tumor was stable, but that its measurements had doubled what they were last year. Butler’s MRI results were sent on to the doctor in Miami and, two days later, Butler was contacted to schedule an appointment.

“I went, ‘Oh, Lord!’”

Butler’s doctor believes surgery is her best option. By the same token, because the tumor is touching a number of vessels and nerves, they once again won’t be able to remove the entire tumor. The goal is to remove the portion of the tumor touching Butler’s optic nerve and a course of radiation to stunt the tumor’s growth. She said there remains a chance that it will grow again. She will continue to be monitored in the years ahead.

Butler began preparations immediately to have her second surgery.

The first time she had surgery, it was an emergency. She went in unconscious, and only recently learned that her medical bills ran to $175,000.

She has no idea what her medical bills will amount to six years later. But she is thankful she has insurance even though it does not give her 100 percent coverage. She will host a steak-out to help supplement the funds she raises through crowdfunding to defray medical bills to come from the hospital for surgery, the surgeon, accommodations and radiation treatment.

As Butler prepares for another battle, she looks back at her four decades on Earth and said she sees a life story which she describes as “weird” and a lifetime of issues.

She was born with a pigment deficiency which she said almost looks like she had burns. The retina of her right eye detached, mysteriously, when she was about seven years old and had to undergo surgery to have it reattached. Two to three years later, her retina detached, again. She said the ophthalmologist told her family not to redo surgery because she was young. Her retina did not reattach and she lost sight in the right eye. She wears a prosthesis. She has other issues that she said she has had corrected over the years.

Despite her challenges, Butler said she gives thanks and praise to God.

“My life has been better because I’ve been motivated to do better because of what I’ve been faced with,” she said.

Her beautiful baby boys, she says, also serves as motivation for her.

Signs and symptoms of meningioma typically begin gradually and may be very subtle at first, according to mayoclinic.org. Depending on where in the brain or, rarely, spine, the tumor is situated, signs and symptoms may include: changes in vision, such as seeing double or blurriness; headaches, especially those that are worse in the morning; hearing loss or ringing in the ears; memory loss; loss of smell; seizures; weakness in your arms or legs; and language difficulty.

It also isn’t clear what causes a meningioma. Doctors know that something alters some cells in the meninges to make them multiply out of control, leading to a meningioma tumor.

Risk factors for a meningioma include radiation treatment (radiation therapy that involves radiation to the head may increase the risk of a meningioma), female hormones (meningiomas are more common in women, leading doctors to believe that female hormones may play a role), an inherited nervous system disorder (the rare disorder neurofibromatosis 2 increases the risk of meningioma growth) and obesity (a high body mass index is an established risk factor for many types of cancers, and a higher prevalence of meningiomas among obese people has been observed in several large studies; but the relationship between obesity and meningiomas is not clear.)

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Shavaughn Moss

Shavaughn Moss joined The Nassau Guardian as a sports reporter in 1989. She was later promoted to sports editor. Shavaughn covered every major athletic championship from the CARIFTA to Central American and Caribbean Championships through to World Championships and Olympics. Shavaughn was appointed as the Lifestyles Editor a few years later.

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