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Teenager Overcomes Brain Tumour and Shares His Experience (Hypopituitarism)

October 16, 2023

MaryO Growth Hormone Deficiency, Pituitary, Pituitary Surgery, radiation, Success Stories, Treatments , , , , , Leave a comment

Niall Cavanagh, now aged 48, bravely fought and beat a brain tumour diagnosis when he was a teenager. He shared his experience with The Kerryman in an interview conducted ahead of the seventeenth annual International Brain Tumour Awareness Week. This week-long event, running from October 28th to November 4th, aims to raise awareness about brain tumours and support those affected by them.

Niall’s journey was not an easy one. Leading up to his diagnosis in 1992, he experienced symptoms such as excessive thirst, urination, severe headaches, vomiting, and stunted growth. It was when he went for an eye examination for double vision that the examiner noticed something seriously wrong with his retinas. Further tests revealed a germinoma brain tumour pressing on the pituitary gland.

To relieve the pressure caused by the tumour, Niall underwent an emergency ventriculoperitoneal shunt procedure. This involved inserting a tube from his brain to his abdomen to drain the excess cerebrospinal fluid. He also underwent extensive radiotherapy to shrink the tumour and prevent its spread.

The tumour affected Niall’s pituitary gland, resulting in a condition known as hypopituitarism. This condition causes a deficiency in various hormones, including growth hormone and anti-diuretic hormone. Niall experienced adverse effects on his physical and mental health due to the tumour and subsequent treatments.

Despite the challenges, Niall gained a clearer perspective on life. He learned to appreciate what is truly important and developed compassion through his own struggles with depression and anxiety. He emphasized that each person’s experience with a brain tumour is unique, and it’s essential to show support and understanding to others facing similar battles.

Niall’s health has gradually improved over the years, although he still faces challenges due to a weakened immune system. However, he remains resilient and has pursued higher education, obtaining two degrees in IT and a Masters in information systems. He currently works part-time in an administrative role with the Renewable Energy Centre in Killarney.

Throughout his journey, Niall received invaluable support from his family and various organizations, including the Cork Brain Tumour Support Group (now Brain Tumour Ireland), the Pituitary Foundation, and Headway in Tralee.

Niall’s story serves as an inspiration and a reminder of the importance of raising awareness and providing support to those affected by brain tumours. International Brain Tumour Awareness Week aims to continue spreading awareness and fostering understanding of this life-changing condition.

Sources:
– The Kerryman

From https://www.expresshealthcaremgmt.com/news2/kerry-man-reflects-on-beating-brain-tumour-diagnosis-as-a-teenager-you-have-to-sink-or-swim/156637/

Medical Mysteries: Were Wedding Jitters Making Her Sick?

October 13, 2023

MaryO Cancer, Ectopic, Lung Surgery, Lung Tumor, Treatments , , , , , , , , Leave a comment

Bridget Houser felt despairing. In the months before her 2018 wedding, Houser, who had never struggled with her weight, noticed that it inexplicably began to creep up. In response she doubled the length of her runs to eight miles, took back-to-back high intensity workout classes and often consumed only water, coffee and fruit during the day before a spartan, mostly vegetable, dinner.

Yet no matter what Houser did, her weight stubbornly increased and her oval face grew round, a transformation that was glaringly obvious in comparison with her identical twin sister.

Houser wondered whether the five pounds she gained despite her herculean effort was a corollary of other problems. For the previous two years she had battled a string of maladies: first daily headaches, then crippling anxiety, followed by insomnia, hair loss and acne, something she’d never endured as a teenager.

“Stress was the universal explanation,” recalled Houser, a controller for a small business in Chicago. When doctors suggested that her upcoming marriage might be a cause of her problems, Houser considered, then rejected, the theory. It just didn’t jibe with her feelings.

In early 2019, about six months after her wedding, Houser insisted that her doctors perform several tests. They ultimately revealed that her symptoms weren’t the result of stress or marital misgivings but of a serious illness that had been smoldering for years.

After successful treatment followed by a long recovery Houser, now 34, feels far better than she did during those miserable years in her late 20s.

“I wish I’d been nicer to myself and not blamed myself for what was going on,” she said.

Getting through the wedding

In 2016 Houser began experiencing daily pain in the back of her head, a common spot for tension headaches. When the headaches failed to improve with dietary changes or nonprescription pain relievers, she consulted her primary care doctor, followed by a neurologist who told her she had migraines.

Houser, then 27, noticed that the headaches were worse when she wore contact lenses. “It was affecting my daily life and I talked myself into thinking the problem was my contacts,” she said. She decided Lasik surgery might help and in October 2017 underwent the procedure, which uses a laser to reshape the cornea, reducing or eliminating dependence on contacts or glasses.

Her vision improved and the pain disappeared — briefly. A week after eye surgery, her headaches returned. “I wasn’t overly concerned,” Houser said. “I know a lot of people have headaches.”

A few months later for no apparent reason Houser developed “really bad anxiety. It wasn’t just like I was anxious,” she recalled. “I couldn’t function. I’m Type A so I knew what anxiety is, but not to this degree.”

One weekday morning in early 2018 she felt so overwhelmed that she took a sick day, then called her twin, Molly, and their mother and told them she needed help immediately.

They managed to schedule a same-day appointment with a psychiatrist whom Houser began seeing regularly, along with a therapist. The psychiatrist zeroed in on her impending wedding and told Houser that the event can cause “huge anxiety.” She began taking an antidepressant along with Ativan, an anti-anxiety drug she used when things got really bad. She also ramped up her yoga practice, hoping it might calm her.

Houser vividly remembers riding the escalator to her office one morning “and in my head I kept saying, ‘I’m in trouble, I’m in trouble,’” although she didn’t know what was wrong.

Her changing appearance had become a source of great unhappiness. Although her weight remained in the normal range, Houser couldn’t figure out why she was gaining weight after drastically slashing her food intake and dramatically ramping up exercise. Her normally thick hair had thinned so noticeably that her hairdresser gently advised her to consult a doctor.

Houser’s psychiatrist thought her hair loss might be caused by her antidepressant and switched medications. That didn’t seem to help.

Houser was particularly bothered by her newly chubby face. “It was like a joke in my family,” she said, adding that she was teased about being overly sensitive.

Even her wedding day was colored by unhappiness about her appearance and the intense amorphous anxiety that seemed omnipresent.

“Rather than think about how excited I was,” Houser recalled, “it was ‘How can I get through this day?’”

Normal thyroid

After her wedding Houser felt worse. She developed severe insomnia, night sweats and acne. In February 2019 a nurse practitioner in her primary care practice ordered tests of her thyroid, which were normal. When Houser pressed for additional testing, she was referred to an endocrinologist. He told her she was stressed.

Dissatisfied, she saw a second endocrinologist who agreed with the first. “She said ‘I don’t think there’s anything wrong with you’” metabolically, Houser recalled. The second endocrinologist’s nurse even revisited the marriage question in the presence of Houser’s husband, Doug, who had accompanied her to the appointment. “She said ‘I knew on my honeymoon I shouldn’t have gotten married,’” Houser remembered her saying. “‘Are you in a happy marriage?’ I couldn’t believe it.”

Months earlier, the nurse practitioner who ordered the thyroid tests briefly mentioned measuring levels of cortisol, a hormone involved in the body’s response to stress and other functions. Elevated levels of cortisol can indicate Cushing’s syndrome, an uncommon hormonal disorder that occurs when the body produces too much of the hormone over a prolonged period.

“She had thrown cortisol testing out there and I think it was always in the back of my mind,” Houser said.

She asked the second endocrinologist to order cortisol tests. The doctor agreed, but not before telling Houser that she didn’t think she had Cushing’s because she lacked the classic symptoms: major weight gain, purple stretch marks and a fatty hump between the shoulders. Houser did have the “moon face” characteristic of Cushing’s that is also seen in people who take high doses of steroids for long periods to treat various illnesses — but Houser wasn’t taking steroids. Insomnia, headaches, acne and anxiety can be symptoms of Cushing’s.

There are several forms of Cushing’s syndrome, which typically results from a tumor — usually benign but sometimes cancerous — in the pituitary or adrenal gland that pumps out excess cortisol. Sometimes tumors develop elsewhere in the body such as the lungs or pancreas. Cushing’s affects roughly five times as many women as men and typically occurs between the ages of 30 and 50. If left untreated, it can be fatal.

A trio of tests measuring cortisol levels in Houser’s blood, urine and saliva were significantly elevated; the amount in her urine was eight times higher than normal. The formerly skeptical Chicago endocrinologist told Houser she had Cushing’s and referred her to James Findling, a Milwaukee endocrinologist who is internationally recognized for his treatment of the disease.

“I was just so happy to have a diagnosis,” Houser recalled.

Revealing photos

Findling asked Houser to bring photographs taken several years earlier to her October 2018 appointment. It is a request he makes of patients as a way of spotting telltale physical manifestations. In Houser’s case, the facial change was particularly striking because she is an identical twin.

Findling noted that delayed diagnosis is typical, because physical changes and other symptoms tend to occur gradually and insidiously. Houser, he added, “didn’t look like the typical Cushing’s patient. She wasn’t obese and she didn’t have diabetes or hypertension. It was more subtle than many cases.”

The next step was determining the location of the tiny tumor. Tests found nothing in Houser’s pituitary or adrenal glands, and CT scans of her pelvis, chest and abdomen were clean. Findling ordered a dotatate PET scan, a highly sensitive CT scan that can find tumors that elude conventional imaging. The scan revealed a nodule in Houser’s left lung.

Houser sought a second opinion from a thoracic surgeon in Chicago. While Findling and a thoracic surgeon at Milwaukee’s Froedtert Hospital strongly recommended that she undergo surgery to remove the tumor, the Chicago doctor disagreed. He said he didn’t think the lung nodule was causing Cushing’s and recommended that Houser continue therapy and anti-anxiety medication.

“Do you know what it’s like to wake up from surgery and to not be better?” she remembers him asking her.

After deliberating with her husband and conferring with her Milwaukee doctors, Houser opted for surgery performed Oct. 30, which removed part of her left lung. A pathologist determined that the nodule was a rare, slow-growing neuroendocrine lung cancer known as a bronchial carcinoid, which can cause Cushing’s. The Stage 2 cancer had spread to a nearby lymph node.

“Fortunately I think we got it early,” Findling said. “She’s had a sustained remission and a cure of her Cushing’s.”

“The cancer didn’t rock my world,” said Houser, who had previously had a melanoma skin cancer removed. (Doctors have told her they don’t think the cancers are related.) “It was about not having Cushing’s anymore, which was more important.”

So why didn’t Houser’s doctors, among them endocrinologists, suspect Cushing’s?

Findling, who estimates he has treated as many as 2,000 people with the disease in his 40-year career, said that while doctors are taught that Cushing’s is rare, it’s not. He cites a 2016 study, which that found that 26 of 353 endocrinology patients were found to have the disease.

Textbook descriptions, which include the presence of purple stretch marks and a hump, are “almost a caricature,” Findling observed. “It’s pretty well recognized that Cushing’s is more subtle than that … and can cause neuropsychiatric and neurocognitive problems.”

Houser’s normal weight and the fact that she didn’t have high blood pressure or diabetes may have misled doctors.

“I think we’ve moved the needle a little bit, especially among endocrinologists,” he continued, adding that “the threshold for screening has got to change. Once you tell a primary care doctor that it’s a rare disorder, it goes in one ear and out the other. They think they’ll never see it.”

“When you make this diagnosis it can have fabulous outcomes,” he added, citing Houser’s case. “That’s why I’m still doing this at my age.”

Houser considers Findling to be her “literal lifesaver.” She spent the next year seeing him as she was slowly weaned off medications to normalize her hormone levels and recover her strength.

She is monitored for Cushing’s annually, remains cancer-free and, other than residual fatigue, feels well. In October 2021 she gave birth to a daughter. Her son was born eight weeks ago.

Houser regards the help provided by her family, particularly her husband whom she called “my biggest supporter,” as essential. That seems especially ironic because stress about their marriage had been blamed for symptoms that were actually caused by a cancer.

“He was a huge help in calling doctors and making the necessary appointments when I didn’t have the energy to fight anymore.” His unwavering love, she said, was “a testament to our strong marriage.”

From https://www.washingtonpost.com/wellness/2023/10/07/weight-anxiety-wedding-medical-mysteries/

Valrie, Pituitary News Item

October 13, 2023

MaryO News Items, Pituitary , , Leave a comment

HOUR-LONG seizures, vision loss in the right eye, and failure to complete sentences are among the challenges that 54-year-old Valrie Anderson has been battling for the last 20 years.

These problems stem from a condition called pituitary adenoma, which is a growth or tumour on the pituitary gland in the brain.

In an emailed response shared with the Jamaica Observer, Anderson’s doctor at the University Hospital of the West Indies, Peyton Lawrence outlined her diagnosis, which has to be treated at Miami Neuroscience Center, Larkin Community Hospital in Miami, Florida.

“After having carefully reviewed your patient’s medical information, in my opinion, Ms Valrie Anderson is a candidate for gamma knife radiosurgery for the treatment of her pituitary adenoma,” the email stated.

According to her sister, Winnifred Anderson Plummer, Valrie began showing signs of the condition while she attended high school but her health got worse during her 20s.

She said her sister’s seizures would last for two to three hours, though the typical time span is usually seconds or minutes before the brain cells return to normal.

“When the seizures became more frequent was when we discovered, after MRI [magnetic resonance imaging] tests, that she had a tumour on the brain. A surgery was done in 2013 at UHWI but since that time the tumour has regrown; it has caused her to have more violent seizures before the surgery and they last for longer periods. Even the doctors that are seeing her when she has an attack, they too are dumbfounded about the length of time her body takes to settle,” she explained.

Anderson Plummer stressed that the deterioration of her sister’s condition has been painful for her relatives.

“We remember how Valrie was – a go-getter. When she was at the bank she was the best at what she did. She left the bank and went into sales and it was the same thing. She is not the person who would sit down and watch the world go by, she wants to be a part of what is making the world go by — that is just how Valrie was — and to see her now it is just heart-breaking. She can’t even open a can of milk,” her sister stressed.

“Valrie is a praying person and she believes that one day the Lord will take away this from her, and I think that is what helps to sustain her as well. I know there is something special about Valrie why God is preserving her,” she added.

Valrie is scheduled to complete the surgery at a cost of approximately $3 million in August, but her relatives are facing financial difficulties and might not be able to source the funds that soon.

Anyone wishing to help can reach out to Anderson Plummer’s email: view2change@hotmail.com

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