\u201cIt was concerning for me,\u201d she said. \u201cI\u2019d always been regular, never on birth control.\u201d<\/p>\n
Her gynaecologist suggested Sedoric\u2019s running and workouts \u2013 and stress \u2013 were the culprits. But that didn\u2019t make sense: Sedoric had been a three-varsity-sport athlete in high school and continued working out with her college sports teams, so she hadn\u2019t been exercising any more than usual. The doctor ordered a blood test, which showed slightly low oestrogen levels. She was prescribed progestin, a form of the hormone progesterone, for a week to reset her menstrual cycle. When that failed, the doctor said it might take some time and to \u201ccome back in a few months\u201d.<\/p>\n
But a few months later, still without her period, Sedoric began experiencing severe hip pain.<\/p>\n
Odd, disparate symptoms continued to accrue, including pelvic floor pain, for which she received a series of nerve-blocker injections through her vagina, and leg pain, which required physical therapy. The jaw pain never stopped. A new oral surgeon suggested \u201cbreaking my jaw and putting it back in place\u201d, she said.<\/p>\n
Then, after moving from her parents\u2019 home in New Hampshire to an apartment in Lower Manhattan, Sedoric noticed subtle changes in her body: her face seemed to be broadening, her lips got puffier and her fingers swelled to the point that the cherished gold ring belonging to her grandmother that she always wore snapped. \u201cMy body was deforming before my eyes,\u201d she said. She attributed the shifts to routine ageing, living in New York City, drinking with friends and the ongoing stress of the pandemic.<\/p>\n
After two years, several misdiagnoses and some painful treatments that didn\u2019t help, Sedoric was about to give up on solving her health problems. Then, in desperation, she decided to seek help at a private medical clinic, which, for a hefty fee, conducted an exhaustive battery of tests. What emerged from those tests eventually put her on the path to figuring out that she had a rare, life-altering condition that would undermine her sense of self in profound ways.<\/p>\n
\u201cI lived in pain and was gaslit for years,\u201d Sedoric said. \u201cBut the experience gave me a different perspective, like you almost died, but now you get to live.\u201d<\/p>\n
Desperate for answers<\/p>\n
In 2021, during a Christmas holiday in New Hampshire, Sedoric said her best friend\u2019s father, an orthopaedic surgeon, recommended a privately run clinic in Colorado that conducts comprehensive testing and full physical work-ups for people with difficult-to-diagnose conditions. The catch: a price tag that would ultimately top US$21,000 ($36,361) \u2013 no insurance accepted. Sedoric\u2019s parents agreed to pay and in February 2022, she flew to the Resilience Code headquarters in Englewood, Colorado, for four days of testing.<\/p>\n
She met with neurosurgeon Chad J. Prusmack, the company\u2019s founder and CEO, for about 90 minutes to review her medical history. Then she spent the following days undergoing tests. She had an MRI of her brain and a biomarker panel looking at thousands of conditions. Blood work tested her for a variety of potential problems, including viral and gut conditions, as well as inflammatory, immune and hormone imbalances.<\/p>\n
\u201cWhen you get a whole bunch of labs, it tells a story of the patient,\u201d Prusmack said. \u201cIt doesn\u2019t take a snapshot and leave out some of the important details.\u201d<\/p>\n
Before the results came in, she said, Prusmack told her he predicted she had Lyme disease, and then prescribed several medications to treat her symptoms. None of the pain medicines worked, she said.<\/p>\n
\u201cExcept for the ketamine: for 30 minutes I was in no pain, but I couldn\u2019t function, so it wasn\u2019t really a long-term solution.\u201d<\/p>\n
One month later, on a Zoom call with Prusmack, she got the news: it wasn\u2019t Lyme disease. It was, most likely, a condition related to the substantially elevated level of IGF-1, a marker for growth hormone, picked up on a test Sedoric had not previously been given. The upper limit of IGF-1 for a person Sedoric\u2019s age was about 200, Prusmack said, but hers was 523, which suggested an endocrine-related problem.<\/p>\n
The MRI also showed a tumour on Sedoric\u2019s pituitary gland, a pea-size structure that sits at the base of the brain and is often called the \u201cmaster gland\u201d because it releases hormones responsible for many critical functions, including growth, metabolism, sex and reproduction, and the body\u2019s response to stress.<\/p>\n
The news stunned her. She said it was a relief to pinpoint the problem, but \u201cnot in my wildest dreams did I think I had a brain tumour and I had no idea how bad it was\u201d. Sedoric texted her roommates, and together they ran through the streets of the Lower East Side, screaming and crying.<\/p>\n
The next day, she started interviewing surgeons.<\/p>\n
Sedoric secured an appointment with Tim Smith, a neurosurgeon at Brigham and Women\u2019s Hospital in Boston.<\/p>\n
Smith said a follow-up MRI showed Sedoric\u2019s tumour was a 1.4cm \u201cmacroadenoma\u201d. Doctors also finally gave her an official diagnosis that explained her years of frustration and pain. She had acromegaly, a rare condition that, in adults, causes certain bones, organs and other soft tissue in the face, jaw, hands and feet to grow far beyond what is typical. In children, whose growth plates have not yet closed, the condition can cause excessive height and is known as \u201cgigantism\u201d. Among the most famous people with gigantism was Andre the Giant.<\/p>\n
Smith said Sedoric did not appear with many of the telltale signs of acromegaly, which afflicts about 30 to as many as 120 people out of a million, according to various analyses that show prevalence to be higher than previously thought. She didn\u2019t have an obviously prominent jaw, for example, or a massively larger shoe size. Still, her arthritis-like joint pain was unusual for a fit, young adult, he said.<\/p>\n
\u201cAt her age and with her athleticism, this [collection of symptoms] was just very strange,\u201d Smith said.<\/p>\n
She did display some classic symptoms, he said, including swelling in her face and hands and what\u2019s known as frontal bossing, a prominent or bulging forehead.<\/p>\n
This happened, Smith said, because the excessive growth hormone secreted by the pituitary caused overgrowth of cartilage, bone and a form of connective tissue called synovium, which first made the joints look bigger and then caused them to stop working normally.<\/p>\n
On April 26, Smith successfully removed Sedoric\u2019s tumour. About an hour after the operation, however, she said she got out of bed to use the toilet and suddenly felt nauseated and off balance. The next thing she remembers is waking up covered in vomit with about a dozen medical professionals staring at her.<\/p>\n
She had apparently thrown up and breathed it in through her nose, causing the vomit to travel up through the surgical cavity. Soon, she was in the intensive care unit with a high fever and throwing up blood; a spinal tap confirmed she had bacterial meningitis. Bacteria from her gut had infected her brain and spinal fluid; doctors performed a second surgery to clear out the infected area.<\/p>\n
Sedoric returned home after two weeks.<\/p>\n
Living with uncertainty<\/p>\n
It hasn\u2019t been an easy recovery. She has less jaw pain and the swelling and puffiness in her body transitioned back to normal. But she\u2019s developed headaches, still has pain in her legs and suffers lingering trauma from the surgery complications.<\/p>\n
Her future remains uncertain. An analysis of Sedoric\u2019s tumour found she has a more aggressive form of the disease; there was a 20-40% risk of a recurrence within 10 years, Smith said, and a lifetime risk \u201cclose to 100 per cent\u201d.<\/p>\n
Sedoric sees endocrinologist Nidhi Agrawal, the director of pituitary disease at the Holman Division of Endocrinology, Diabetes and Metabolism at NYU Langone Health, every six months to closely monitor her symptoms.<\/p>\n
Agrawal says in certain ways, Sedoric is lucky. While some of the bone growth she experienced is irreversible, much of the soft tissue expansion has resolved because her acromegaly was diagnosed only a couple of years after symptoms began. The typical diagnostic delay for acromegaly was generally five or six years, Agrawal said, which is an improvement from a few years ago when the delay was closer to 15 years.<\/p>\n
\u201cThese are patients who have been just hopping around seeing different practitioners and just not getting the diagnosis,\u201d she said.<\/p>\n
Agrawal says she now tries to educate medical students, dentist groups and other specialists to let them know that if patients come in complaining of unexplained pain in disparate body parts, it could be acromegaly.<\/p>\n
Sedoric, now 28, has tried to integrate her illness into daily life. She remains active \u2013 she ran the New York and Chicago marathons recently and plans on completing the Boston Marathon in April \u2013 and enjoys her job as a sustainability consultant. She is not taking medication for her condition.<\/p>\n
From the outside, her life looks fairly typical.<\/p>\n
\u201cI hang with friends, run marathons, look pretty normal,\u201d she said. \u201cBut it\u2019s hard when you have an invisible disease with no cure that comes with constant pain and could deform your body at any time.\u201d<\/p>\n
She is learning to live with uncertainty.<\/p>\n
\u201cThe most difficult thing is trusting myself,\u201d Sedoric said. \u201cLike having to look in the mirror and decide if I have a swollen face because I didn\u2019t get enough sleep or if I have a tumour. It\u2019s trusting when to take it seriously and when to let go.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"\u201cIt was concerning for me,\u201d she said. \u201cI\u2019d always been regular, never on birth control.\u201d Her gynaecologist suggested…\n","protected":false},"author":3,"featured_media":432524,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[36],"tags":[60671,108048,194,3411,4465,29495,2871,7823,70828,381,200754,210,14033,5037,3250,1083,517,153007,1800,7825,8659,29180,96816,200753,49413,177619,9877,22799,4644,448,64322,38122,50116,67,132,68,21129,1917,74334,29689,1628,7827],"class_list":{"0":"post-432523","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-mental-health","8":"tag-worse","9":"tag-108048","10":"tag-about","11":"tag-annie","12":"tag-brain","13":"tag-cause","14":"tag-college","15":"tag-covid","16":"tag-even","17":"tag-for","18":"tag-grew","19":"tag-health","20":"tag-ignore","21":"tag-it","22":"tag-march","23":"tag-medical","24":"tag-mental-health","25":"tag-mysteries","26":"tag-pain","27":"tag-pandemic","28":"tag-real","29":"tag-revealed","30":"tag-scan","31":"tag-sedoric","32":"tag-senior","33":"tag-she","34":"tag-spring","35":"tag-start","36":"tag-stress","37":"tag-the","38":"tag-there","39":"tag-told","40":"tag-tried","41":"tag-united-states","42":"tag-unitedstates","43":"tag-us","44":"tag-was","45":"tag-with","46":"tag-woke","47":"tag-worry","48":"tag-year","49":"tag-years"},"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@us\/115682146095629649","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts\/432523","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/comments?post=432523"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts\/432523\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/media\/432524"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/media?parent=432523"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/categories?post=432523"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/tags?post=432523"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}