I was diagnosed with Cushing’s in 2006 and had a pituitary tumor removed in 2007 (Swedish Hospital in Seattle).
It took a few years and dozens of doctors to get there. My health has improved since then, but I’m not well (except maybe in comparison to how bad I was). I don’t have the energy to write up a detailed bio at the moment, but it’s pretty much the same as anyone else here: misdiagnoses, bad doctors, frustration, confusion, etc. It will come out in my posts, but I’m postive I can feel better than I do.
I just need a doctor that knows what they’re doing AND has more than a ten-minute visit to spend on me.
I was finally diagnosed with Cushings Disease in November 2012 and had the tumour removed from the Pituaitary Gland in Dec 2012.
I got an infection in the brain on the site of the tumour and was ill for 3 months. It is the most terrible disease and as a result of this I have now got many more things wrong with me.
i recently was diagnosed with breast cancer and I am sure that it has been caused by the Cushings.
If anyone else has the same experience I would be glad to hear from them.
I first noticed something abnormal about my health in the summer of 2009, at age 23. I suddenly developed severe acne when I had had clear skin since I was a teenager, and I noticed more hair on my face and body than I was used to. In retrospect I realize that I’d also had bouts of weight gain, a buffalo hump and excessive sweating during my adolescent years, but I didn’t think anything of it at the time.
Around the same time I noticed the acne and hair growth, I also started putting on weight. I’d been on the thicker side for my height since childhood, so I decided to join Weight Watchers. Even though I was hungry a lot of the time, I stuck to the plan religiously and lost about a half pound per week. It was slow, but I was moving in the right direction so I stuck with it. I had bouts of fatigue throughout the process, but I would just assume that I needed to tinker with my diet – more protein, less protein, more fruit, less fruit, whatever. I tried a lot of different things, always focusing on getting adequate nutrition, but never had the energy that my Weight Watchers buddies seemed to have.
About six months later I finally went to my mom’s endocrinologist when I was visiting my parents in Texas. I was concerned that the acne and hair growth meant I had PCOS. All those tests came back normal, so the doctor gave me a 24 hour UFC just in case. It came back elevated, and she said I ought to follow up with an endocrinologist in New York where I live.
My next menstrual period didn’t come until 4 months later, and then they stopped completely.
My new endocrinologist in New York ordered more tests (you all know the drill). Over the next six months or so the 24 hour UFCs kept coming back high, salivary cortisols were normal or high, and one dexamethasone suppression test was kind of ambiguous. The doctor said that my urine volume was really high and might be screwing up the results, so I retested after limiting my fluid intake. That UFC came back normal, so I was instructed to follow up in six months.
As if on cue, the months following my normal UFC were great. For some reason I finally felt like I was bursting with energy. Beyond that, I had lost weight and even landed my dream job. At the time I assumed that the energy was from finally finding the right balance in my diet. The acne and hair growth were still there, but as far as I was concerned it was nothing that couldn’t be solved with some tweezers and makeup. Later I noticed in photos that even though I had lost weight, my face was much rounder than it had been before.
The nightmare began in January of 2011. I started feeling more anxious than usual. I began to cut more and more things out of my schedule because I didn’t feel like I had the mental energy to handle my normal workload. I had to take a Benadryl most nights to sleep. I started suffering from regular constipation for the first time in my life. My appetite increased markedly; I kept feeling less and less satisfied with my normal diet. I gave in and started rapidly gaining weight again.
After a particularly stressful week in February, I asked my mother to stay with me in New York for a little while, admitting that I had been feeling out of sorts. I figured I’d take a week off from work and just do fun stuff and I would be right back to normal.
…Wrong.
The bouts of fatigue returned, this time so crushing that I didn’t even have the energy to make my own meals. I’ll never forget the day I attempted to go out for my morning jog, trying to convince myself that it was all “in my head,” and despite having plenty of cardiovascular and muscular strength, I could barely take a single step. I felt like the world had gotten bigger somehow, like I drank the shrinking potion from Alice in Wonderland.
At the same time, my appetite became so ravenous that I felt like I could gnaw my arm off 24/7. I also started feeling scatterbrained and having difficulty focusing. These were the beginnings of the cognitive symptoms that would prove to be the most debilitating of all.
My mother, god bless her eternally, suggested that the odd change in my mental state might have something to do with all those abnormal hormone levels from the prior year’s tests. I followed up with the endocrinologist again and had a very high 24 hour UFC. He ordered an MRI. My symptoms were getting worse, but my mom fatefully broke her foot and had to return to her home in Texas.
By the time March arrived I was so scatterbrained that I constantly felt drunk. Going to work was petrifying. My appetite was still insatiable.
Finally, the mood swings came. By “mood swings,” I don’t mean irritability. I mean that I became an ultra-ultra-rapidly cycling manic depressive. I would wake up at 3:30 in the morning giddy with energy, writing long, rambling e-mails to everyone I know, trying to go for a jog only to have to stop and dance to the music on my MP3 player in the middle of the Bronx. Then I would feel horrendously depressed mere hours later.
I could spend a lifetime attempting to describe the pain of bipolar depression. It is beyond despair. Take the icky feeling you might get with a cold or a flu and multiply it by a thousand. I was so distressed I felt like my brain was on fire. Like I had been poisoned. It would get so bad that I couldn’t speak. I vomited just from the discomfort. Once I went to the ER, desperate for relief. All my vitals were normal. They just let me ride it out, like I was having a bad drug trip. Later, I described these feelings to my roommate, who said she felt that exact feeling while going through narcotics withdrawal.
One of the most interesting aspects of this experience was that every time I got a migraine headache (which I’ve had periodically for most of my life), my depression would lift or I would get more manic. Note that if I had a choice, I would take a migraine every day of my life over the pain of severe depression.
I went to a psychiatrist, and much to my dismay, he told me I was not crazy. He gave me totally ineffective herbal mood-lifters and told me to go back to the endocrinologist. I started taking huge doses of caffeine in an attempt to take the edge off the low moods. It worked temporarily, but the feeling always returned. I ended up back in the ER after experiencing a lovely phenomenon called “sleep paralysis” (Google it) for two hours straight, which understandably gave me a panic attack. I was put on benzodiazepines, which prevented another panic attack but did nothing to make me more comfortable.
Some interminable time later, my endocrinologist called to inform me that I had a 5mm adenoma on my pituitary gland. I wept with relief and my family made immediate arrangements to take me to MD Anderson for surgery.
Maybe if I had read some of the bios on this site I would have anticipated what was to come. Cushing’s patients never have it that easy. In my scatter-brained, benzo-doped, manic-depressive stupor, I showed up at MD Anderson for…more tests. There, both a 24 hour UFC and dex/CRH test came back normal. A few things about the dex/CRH test were not administered as planned, but the in-house testing results combined with my still-normal bodyweight convinced MD Anderson that I did not have Cushing’s, and was simply a total nut case. They sent me on my way.
Finally I returned to my mom’s endocrinologist, the same woman who had had the foresight to give me my first 24 hour UFC. She ordered another round of tests and sent me to a wonderful psychiatrist who promised to do her best to make me feel better while we waited for a diagnosis. A litany of psychiatric medicines (mood stabilizers, sleeping pills, stimulants, antidepressants) would each work for a few days or a week and then wear off. Eventually the mood swings turned into a persistent, mind-numbing depression.
In retrospect, the benefit of having my mood fluctuate so violently earlier in my illness was that the depression didn’t have time to take hold of my thoughts. It was painful, yes, but I was able to fight the feelings of hopelessness and self-hatred with logic and positive self-talk. Later on I was not only completely miserable, but also came to believe that my misery would never end. I’m amazed I lived to tell the tale.
By midsummer I had a few more elevated 24 hour UFCs under my belt and had gained enough weight to look more “cushingoid.” This time I went to Methodist Hospital in Houston. The surgeon there agreed with my endocrinologists that I had pituitary Cushing’s, but disagreed that my MRI showed a defined adenoma. Again, Cushing’s patients never have it that easy. Luckily this surgeon was caring and proactive enough to order an IPSS and schedule me for surgery, though he warned me that it may not cure my depression. I asked for the surgeon to remove my entire pituitary gland in the event that he didn’t find a tumor.
August 23rd, 2011 was the day of my rebirth. I can attribute my euphoria in the week after the surgery to the strong pain meds I was on for the CSF drain, but by the time they were out of my system I was astounded to find that my mood and thinking were absolutely 100% normal. I can once again think, laugh, smile, sleep, taste, and enjoy the company of others. Within three weeks I had enough mental energy to resume working from home.
No tumor was found, so my entire gland was removed. No amount of hormone replacement in my future can dampen the joy of having my self back, permanently, with no fear of relapse. I’m not even fully recovered from surgery and I’m feeling better than I have in quite a long time. Even the constipation and acne are gone!
It’s disorienting and traumatic to have essentially lived with a temporary form of bipolar disorder, only to be cured of it as suddenly as it began. I fancied myself knowledgeable about mental illness before this, but I know now that you just do not fully understand it until you feel it first-hand. Luckily it all feels like a distant memory now. There must be a natural sort of psychological distancing that occurs with a traumatic experience like that.
As I posted on the forums shortly after my surgery, for those of you who may have given up hope, keep fighting! Take it from me that there are better times ahead.
Note: Email Andrea or add comments to this bio below.
Dr. Oldfield was MaryO’s surgeon at the NIH November 3, 1987. This was back in the olden days of transsphenoidal surgery. I honestly expected to die but this man saved my life.
Dr. Edward Hudson Oldfield quietly passed away at home in Charlottesville, Virginia, surrounded by his family on September 1, 2017.
Born on November 22, 1947, in Mt. Sterling Kentucky, he was the son of Ellis Hudson Oldfield and Amanda Carolyn Oldfield. Ed is survived by his wife of 43 years, Susan Wachs Oldfield; a daughter, Caroline Talbott Oldfield; three siblings, Richard Oldfield of Mt. Sterling, Ky., Brenda Oldfield of Lexington, Ky., and Joseph Oldfield (Brenda) of Morehead, Ky.; nieces, Adrienne Petrocelli (Phil) of Cincinnati, Ohio and Keri Utterback (Brad) and nephew, Gabe Oldfield, both of Mt Sterling. His parents and a sister, Bonnie Lee Cherry, predeceased him.
Dr. Oldfield attended the University of Kentucky and graduated from the UK Medical School. He completed two years of surgical residency at Vanderbilt University and spent a year in Neurology at the National Hospital for Nervous Disease in London, England, before completing his neurosurgical residency at Vanderbilt University. After a year in private practice in Lexington, he completed a two-year fellowship at the National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health in Bethesda, Md.
In 1984, he was named Chief of the Clinical Neurosurgery Section at NINDS and from 1986-2007, he was the Chief of the Surgical Neurology Branch at NIH. He joined the Department of Neurosurgery at the University of Virginia in 2007 where he held the Crutchfield Chair in Neurosurgery and was a Professor of Neurosurgery and Internal Medicine.
He led multidisciplinary efforts in the treatment of pituitary tumors and contributed to the research program in Neurosurgery at UVA. He often said it did not feel he was going to work because he so enjoyed every aspect of his career.
Dr. Oldfield was the author of over 500 original scientific and clinical contributions to medical literature and the co-inventor of patents on convection-enhanced drug delivery and genetic therapy. He served on the editorial boards of Neurosurgery and the Journal of Neurosurgery, where he completed a term of eight years as associate editor. Dr. Oldfield served as vice president and president of the Society of Neurological Surgeons (SNS). He received numerous awards including: the Public Health Superior Service Award; the Grass Medal for Meritorious Research in Neurological Science; the Farber Award; the Distinguished Alumnus Award, University of Kentucky Medical Alumni Association; the Harvey Cushing Medal; and the first annual AANS Cushing Award for Technical Excellence and Innovation in Neurosurgery.
In 2015 he received the Charles B. Wilson Award for “career achievement and substantial contributions to understanding and treatment of brain tumors”. A man of many interests and endless curiosity, Ed found joy in exploring the world around him with a great appetite for adventure, as long as it included variety and history. He preferred outdoor activities, and throughout his life enjoyed hiking, bird watching, photography and especially fly fishing, which provided the kind of peace he treasured in his limited free time. Learning was a priority in every activity. Ed was interested in genealogy and maintained a precise record of his family history, spending over a decade accumulating and scanning family photographs. It was important to him to know from where and whom his family originated. Though he loved to watch sports, especially the UK Wildcats, he did not always follow a particular team he cheered for the underdog.
His love of music was vast, from Arthur Alexander, Etta James, John Prine, Luciano Pavarotti, Van Morrison and Iris Dement, to name a few favorites. Friends and colleagues remember his gentle southern voice, particularly in his advice, “All you have to do is the right thing; everything else will take care of itself.” His family will remember him loving Shakespeare productions, a good barbecue sandwich, Ruth Hunt candy bars, a warm fireplace at Christmas and several beloved dogs.
A Memorial service was held on Monday, September 25, 2017, at the University of Virginia Alumni Hall at 4 p.m. In lieu of flowers the family requests donations be made to Edmond J. Safra Family Lodge at National Institutes of Health, Hospice of the Piedmont, or Piedmont Environmental Council.
I am recovering Ectopic Cushing survivor, I am 52 years old, I originally got sick when I was 22 it was 1987, I went un diagnosed for 12 years. I had every symptom there is with Cushings from the crazy weight gain to blood pressure being at stroke levels for the 12 years and terrible vision issue that I still struggle with today.
I had 2 surgeries, first I had the Pituitary surgery which left me on deaths door, miss diagnosis of Pituitary when it actually was ectopic with a nickle size tumor in my right lung between my upper and middle lobes. they removed all but a potion of my upper lobe.
I have struggled with vision issues ever since as well as depression, terrible fatigue and all of the other issues that come with having Cushings!
Cushing’s with a pituitary tumor. Had surgery on April 2013.
Surgeon nicked the pituitary gland giving me adrenal insufficiency. Sept 2016 went into adrenal crises while on holiday in Germany. I believe I was given too much prednisone as I have cushing’s again from too much prednisone.
I am working with my Endocrinologist plus an MD with a MSc who is an expert in nutritonal biochemistry.
Casey Dailey, age 38, was fighting Cushing’s disease, a pituitary gland disorder often caused by a tumor creating excess cortisol. She had surgery Aug. 23 and went home the next day. Over the following weekend, she began feeling sick. She vomited, sometimes with blood. Then, she couldn’t stand or talk, relatives said. A high fever started Sunday, after floodwaters surrounded her home, and she became unresponsive.
In the midst of Hurricane Harvey, one family’s cry for help was particularly acute. It was a medical emergency.
Casey Dailey was recovering from surgery at home and needed an ambulance on Aug. 27.
But floodwaters had reached the doorstep of her northeast Harris County home between Greens Bayou and Sheldon Lake.
Her husband, Wayne Dailey, frantically called 911 that afternoon. The line was busy. He dialed more than two dozen times and got through. Help was on the way, he was told, but no one showed up that day or the next.
“That’s when I went to social media,” said Darlene Zavertnik, Wayne’s mother, who lives in Montgomery County. “I went on Facebook and put together a letter.”
Friends and relatives began sharing the post. A cousin called volunteers while Wayne tried 911 one more time and asked for an air rescue. He was told that they were already on the list.
“You don’t understand. She’s dying,” Wayne Dailey recalls saying.
Feeling completely hopeless, he saw some people trolling in a boat just after noon on Aug. 29. Wayne ran out in the water to flag them down. The crew turned out to be the famous civilian volunteers from Louisiana’s Cajun country.
“They came to the house and they got her in that boat,” Zavertnik said.
The Cajun Navy transported Casey Dailey to an airboat. From there, she was loaded onto a dump truck. Confusion about emergency medical sites led to a stop on the side of the road, which is when she stopped breathing, relatives said. An ambulance finally arrived and paramedics worked on her 15 to 20 minutes.
“They got her to the hospital and they just could not …” Zavertnik said, her voice trailing off into sobbing. “We just don’t want anything like this to happen to anybody like her again. There has to be a much better system for this.”
The Harris County Institute of Forensic Sciences recorded 4 p.m. Aug. 29 as the time and date of Cassandra Dills-Dailey’s death at a Humble emergency room. One week later, the cause and manner remains pending. She is not listed among the institute’s storm-related deaths, which all involve drowning or electrocution in floodwaters.
Casey Dailey was 38. The devoted mother had two sons, 14-year-old Luke and Ronnie, 10. She homeschooled the oldest.
She also reached out with kind gestures, such as crocheting baby blankets for strangers who were expecting.
“She was probably one of the sweetest, most loving people you’d know,” Zavertnik said. “She was just always wanting to do what she could to help people, make them happy and make them feel good. She was very special.”
Jordy is a British man who has been dealing with Cushing’s and many surgeries.
He finds rollercoasters boring, barely broke a sweat zip-wiring off the Tyne bridge and even a parachute jump did not raise his heart rate.
Just a few years ago even the thought of daredevil exploits would have terrified him, but now Jordy Cernik is frightened of nothing.
While that might sound an ideal scenario, the 38-year-old’s new-found bravery is actually the unexpected side-effect of surgery for a rare condition.
Cushing’s Syndrome resulted in the dad-of-two having an operation to remove the gland which produces adrenalin, the hormone which makes us feel scared.
He says: “I would never have had the guts to do any of this, but now nothing fazes me. I’m up for anything – I’m even thinking about doing a wing-walk on a plane too.
“I nearly did a bungee jump a few years ago, but I just couldn’t do it.
“Now I just take whatever is thrown at me and if a challenge helps me raise money for charity, the more daring the better.”
Over the past four months he has completed the parachute jump and zip-wired from the top of Newcastle’s Tyne Bridge and now he is getting ready to complete the last of a trio of challenges – next month’s Bupa Great North Run.
“The doctors didn’t tell me this could be one of the side-effects of the operation,” says Jordy. “But then the condition is so rare I don’t think they know everything about Cushing’s yet.
“Doing the skydive was the ultimate test. I thought that if I was ever going to get scared again then that would be the moment.
“But as we took off in the plane I felt nothing, and when I edged towards the door to jump I felt nothing, and even when I leapt out and pulled my parachute, I didn’t feel scared at all.
“It can be quite frustrating as well though.
“The first time I realised I had changed was when I went on the rides at a theme park with my kids and I just didn’t feel a thing. I just sat there, bored.”
However, the last of his hat-trick of challenges, the Run, will require him to push through the ever-present pain which he has endured for years as a result of Cushing’s.
Britain’s biggest mass participation event, for which The Daily Mirror is a media partner, takes place over a 13.1 mile course from Newcastle to South Shields.
But the syndrome has left Jordy, from Jarrow, near Newcastle, with arthritis, back problems and brittle bones. Worse still, the absence of adrenalin means he now lacks one of the body’s natural painkillers.
“I’m always in pain,” he says. “I’ve just had to learn to zone it out day-to-day and I’m going to have to do that even more when I’m on the run.”
Cushing’s affects around one in 50,000 people in Britain.
It causes a malfunction of the adrenal and pituitary glands which means increased amounts of corticosteroids are produced – often leading to massive, irregular weight gain.
In just three years 5ft 8in Jordy ballooned from 11st 5lb to almost 17st.
While his limbs remained slim, the former Territorial Army recruit saw the pounds pile around the major organs in his torso and head.
“I went through years of hell and I can only describe it as living in someone else’s body,” says the part-time radio presenter and events host.
“I developed this big round moon face and really quite large man boobs, which was so embarrassing.
“But there was absolutely nothing I could do about it. I could go to the gym six days a week and still couldn’t lose any of the weight.
“One of the worst things was that people would stare.
“Sometimes they’d take the mickey – often to try and make me feel better, by making light of things – but it would almost always hurt my feelings.
“And my career as a presenter suffered. I tried to play up to the character of being a big, jolly chap but I always felt I was too fat for TV, which is what I would have liked to do a lot more of.”
But it was the effect on his home life with wife Tracy, 43, and daughters Aimee, seven, and four-year-old Eive that for him was far worse.
“I had other really difficult symptoms which included profuse sweating which meant I couldn’t even hold my kids without wrapping them in towels first,” he says.
“Anyone who has children knows how hard that is, not to be able to do normal things. I often used to be in tears.
“Another symptom was extreme grumpiness, so I would find myself suddenly getting really angry and just exploding at them, plus I was always too exhausted to play with them. It was terrible.”
Jordy believes he can trace his symptoms back 15 years although his Cushing’s was only diagnosed in 2005.
He had visited his local surgery with a string of complaints, but by chance saw a different doctor one day and the syndrome was diagnosed.
“I don’t have any ill-feeling about that,” he says, “because the syndrome can be tricky to spot, partly because it is so rare.”
He went on to have both his pituitary and adrenal glands removed but needed a total of seven operations between 2005 and 2010 and not all went smoothly.
During one to remove his pituitary gland, which is inside the skull, the lining of his brain burst due to the stress of repeated surgery.
And while removing a rib to access the adrenal gland in his torso, his lung was punctured.
That wasn’t the end of the complications. He later developed severe meningitis and ended up on a life-support machine.
“But I still consider myself lucky,” he says. “The doctors told me, ‘You died twice really, you shouldn’t even be here’.”
Things have begun to look up in the past few years, however. The Cushing’s is in remission and Jordy has lost four stone.
His life hasn’t returned to normal entirely – he still has to take 30 pills a day, a cocktail of painkillers and hormones, plus drugs to slow the corrosion of his bones.
He has also been diagnosed with another rare condition, sarcoidosis, which creates nodules of irregular cells in the body and can cause serious complications. He’s convinced he has always had it but it has lain dormant until his body was at its most vulnerable.
At present the nodules can only be found on his skin and he’s being monitored to ensure that it doesn’t spread to his internal organs.
Thanks to the surgery, his life has improved enormously since 2010.
In July he had a breast reduction op which not only improved his appearance but also removed the dangerous accumulation of fat around his heart.
Part of this new chapter involves taking part in the Great North Run and raising money for the Cash for Kids appeal run by his local radio station Metro Radio.
The appeal aims to help children and young people in the North East who are disabled or have special needs, or those who suffer from abuse or neglect.
Jordy’s fundraising goal is a relatively modest £1,000, but for him joining the half marathon’s 56,000 participants on September 15 will be as rewarding as hitting his target.
“I really don’t know if I’ll be able to complete the course.” he says. “But I’m looking forward to it and I’m going to give it my best shot.
“Not feeling fear may feel like the power of a superhero, but what I really need for the Great North Run is superhero strength.”
The Bupa Great North Run is Britain’s biggest mass participation event and is organised by Nova International.
It will include world class athletes Mo Farah, Haile Gebrselassie and Kenenisa Bekele – plus 56,000 other runners.
The event is live on BBC One on Sunday 15th September between 9.30am to 13.30
FLORENCE, S.C. – After struggling with a mysterious illness for nearly three years, Florence resident Taylor Davis is using her diagnosis of Cushing’s disease to raise awareness.
Davis was a healthy young adult when she started as a student at the University of South Carolina in the fall of 2015, but soon into her college career, she began experiencing several symptoms, such as weight gain, insomnia and panic attacks. Davis spent the next three years going from doctor to doctor trying to get a diagnosis for her symptoms.
Since her diagnosis, she has been trying to raise awareness through social media about her experience with Cushing’s disease.
Cushing’s disease is a hormonal disorder caused by high amounts of cortisol, or the stress hormone, in the body, according to the Mayo Clinic website.
During her freshman year, Davis began struggling with insomnia and started gaining weight. At the time, Davis brushed them off. Davis’s symptoms progressed to having panic attacks during her sophomore year.
“I’d be driving down the road, and my whole body would start freaking out,” Davis said. “I’d get heart palpitations, my heart rate would go crazy. I felt like I couldn’t breathe. It was intense panic attacks.”
In addition to the onset of panic attacks, Davis’ insomnia got worse, and she continued gaining weight. Davis also began losing clumps of hair, but she searched the internet and thought it was just normal.
The summer after her sophomore year, Davis said. she went to the doctor for answers with little luck.
“My doctor just kind of like brushed it off,” Davis said. “She told me it was probably just stress from school and stuff like that, and that I needed to diet and exercise more, but I was like, ‘A girl can only diet and exercise so much.’”
As Davis started her junior year, she said. her symptoms progressed to losing larger amounts of hair, which left bald spots that she tried to cover with extensions. At the time, Davis attributed the hair loss to bleaching her hair.
Then Davis began craving copious amounts of salt and large amounts of water.
“I started drinking water bottles by the case each day” and having to go to the bathroom frequently, Davis said. “It would just run straight through me.”
By the time the spring semester came, Davis’ panic attacks began causing blurred vision, nausea and dizziness. She said they felt like heart attacks.
Davis’ mother, Amy Lewis, got her admitted to McLeod Regional Medical Center for testing over spring break. Her kidneys were tested. An MRI and other tests were conducted, but Davis received no answers except that she was fine.
Davis’s panic attacks continued to get worse, so she and her mother began researching all of her symptoms for answers. Their research pointed them toward Cushing’s disease.
After another episode that caused Davis to pass out, her family took her to the emergency room. This time, the doctor had an answer: a brain tumor on her pituitary gland.
“It was so crazy the feeling I had at that moment,” Davis said. “I was so relieved, because I was so terrified for months at that point, and no one was going to help me because I had all of these problems.”
After the emergency room visit, Davis had to wait weeks for an endocrinologist appointment in Florence, but the doctor said she didn’t know enough to diagnose her.
She and her mom found an endocrinologist and neurosurgeon in Chapel Hill, North Carolina. The encodrinologist told her Cushing’s disease is too rare for her to have and said Davis needed to lose weight. The neurosurgeon told Davis an endocrinologist would have to prove that the tumor was causing Cushing’s disease before he would take it out.
By this point, Davis medically withdrew from USC because she could barely walk to class.
Determined to get answers, Davis joined several support groups on Facebook for Cushing’s disease.
The Facebook group led her to make an appointment with Dr. Theodore Friedman in Los Angeles, who was able to diagnose her with Cushing’s disease in October of 2018. In November of 2018, Davis had surgery to remove the tumor from her pituitary gland.
Since the surgery, the tumor removal has caused adrenal insufficiency, so Davis has to take a steroid-replacement medicine. She has been weaning herself off the medicine so that her pituitary gland will begin making cortisol again.
Davis has been using social media, especially Instagram, to post updates on her journey with Cushing’s disease. While she was at USC, she was a public relations major, and she has always loved telling stories.
“It just came natural to me as it (Cushing’s disease) started happening to start sharing my story,” Davis said.
Davis said she receives a few messages with questions about her experience every day from people who see her posts.
“ That (Cushing’s disease) really gets to me sometimes, but talking to those people, helping other people and sharing my story, that brings me back up,” Davis said. “That’s what keeps me happy and keeps me from getting to that dark depression.”
Davis said she is also in the process of starting a YouTube channel to document her experience with Cushing’s disease, because she wants to help others as they go through the process of a diagnosis.
Cushing's Disease is a rare condition caused by excessive production of cortisol, a hormone essential for various bodily functions. It is a specific form of Cushing's Syndrome, where the overproduction of cortisol is due to a tumor in the pituitary gland. The condition affects 10 to 15 people per million each year, predominantly women between […]
For all of my early life, I was the good, compliant, patient. I took whatever pills the doctor prescribed, did whatever tests h/she (most always a HE) wrote for. Believed that whatever he said was the absolute truth. He had been to med school. He knew what was wrong with me even though he didn't live […]
Transsphenoidal surgery is the primary treatment for patients with Cushing disease (CD). This study assessed the surgical and endocrinologic outcomes of patients with CD following endoscopic pituitary surgery using strict biochemical criteria to guide surveillance in patients not achieving early remission.
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