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MaryO

~Chief Cushie~
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MaryO last won the day on October 13

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About MaryO

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    Website Founder
  • Birthday September 22

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    https://cushingsbios.com
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  • Gender
    Female
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    Northern Virginia
  • Interests
    My family, computers, music, reading, ice cream, handbells, the Internet, Chinese Food, chocolate, watching ice skating competitions, napping, piano duets, Kindle, iPad...in no particular order.

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  1. These boards were just upgraded.  On the surface, everything looks ok.  

    Please let me know if anything is not working properly.  I already removed one item from the sidebar and will try to fix that soon

  2. MaryO

    Please help!!

    Excellent, Donna! Please let us know how your new endo works out for you. Best of luck!
  3. Barrow Neurological Institute Sonntag Pavilion St. Joseph’s Hospital and Medical Center 350 West Thomas Road, Phoenix, AZ 85013 October 27, 2018 8:30 AM to 4:00 PM The Barrow Pituitary Center is dedicated to educating patients, caregivers, and loved ones by providing information which is current and non-biased. Experts at this conference will address management of the emotional and physical elements of living with pituitary disorders. We hope attendees will leave empowered to make better-informed decisions about their healthcare and achieve their goals for a long and fruitful life. Event Flyer or to register, visit the Barrow Website For more information contact Maggie Bobrowitz, RN, MBA, at (602) 406-7585 or Margaret.Bobrowitz@DignityHealth.org.
  4. until
    Friday, October 19 at 8:00am to 4:00pm Belfer Research Building, 3rd Floor 413 East 69th St., New York, NY 10021 This course is a comprehensive overview and discussion of the evaluation; management; and medical, surgical, and radiation treatments of the pituitary tumor. The conference will comprise lectures, case-based talks, and Q&A panel sessions. The pituitary gland plays an enormously important role in human development, the maintenance of various essential physiologic functions, and aging and senescence. Hence, the health of the pituitary gland is critical at all stages of human life. For this reason, there are a variety of pituitary disorders that can have a profound impact on multiple organ systems at different ages. General practitioners and even specialists in endocrinology may not be fully aware of the widespread impact of the pituitary gland in health and disease; the function of this course is to educate and inform a general medical audience on pituitary disease. For more information visit their website or contact Tatiana Soto at tas2041@med.cornell.edu or 212-746-0403.
  5. In Memory: Barbara “Cookie” Rothenberg
     
    My family and I met Cookie at the UVA Cushings Conference Fall 2002. She was so helpful and caring. She told my father, sister, and I her “Cushings Story.” She was so, well, there is no better word to describe her, “bubbly.” She was so happy to be there, teaching, learning, and helping with CUSH. She left an impression on my family and I. She had such a great personality. She was one of the very first “Cushies” I met…and she made me re-think my attitude about being sick. She was going through so much, yet she had such a wonderful attitude towards it all. She was amazing!
     
  6. MaryO

    ? Cushing's in 15 yo male

    Jess, I'm so sorry you're going through this Off the top of my head - and I'm not a doctor - this doesn't sound like Cushing's. I'm wondering if some of his issues could be side effects for the anti-anxiety meds he's on Teen years can be an issue but this sounds like more than normal. Can you go back to the doctor who prescribed the meds and see if there's something that won't make things worse? Unfortunately, your photo links don't include photos but email text. I can remove those links, if you wish. If you email those photos to cushingshelp@gmail.com I'd be happy to post them for you. Best of luck to you!
  7. Adrenal Venous Sampling Helps Surgical Decisions in Type of Cushing’s
     
    Cushing’s syndrome patients with tumors on both adrenal glands — which sit on top of the kidneys — could undergo adrenal venous sampling, a procedure where blood samples are taken from both adrenal glands to determine which tumors to remove, researchers suggest.
     
  8. Cushing’s syndrome patients with tumors on both adrenal glands — which sit on top of the kidneys — could undergo adrenal venous sampling, a procedure where blood samples are taken from both adrenal glands to determine which tumors to remove, researchers suggest. Their study, “Outcomes of Adrenal Venous Sampling in Patients with Bilateral Adrenal Masses and ACTH-Independent Cushing’s Syndrome,” was published in the World Journal of Surgery. The work was a collaboration between SUNY Upstate Medical University in Syracuse and the University of Pittsburgh. Cushing’s syndrome, a condition characterized by excess cortisol, can be divided into two main subtypes. In some patients, the disease is dependent on tumors secreting the adrenocorticotropic hormone (ACTH), which stimulates the release of cortisol from the adrenal glands. In others, adrenal tumors are solely responsible for excess cortisol and do not require ACTH for functioning. ACTH-independent Cushing’s syndrome (AICS), the latter subtype, constitutes about 10% to 15% of endogenous — an overproduction of cortisol within the body — Cushing’s syndrome cases, with cortisol-secreting adenomas in just one gland (unilateral) being the most common cause. Compared to unilateral adenomas, adrenal tumors in both glands (bilateral) in patients with AICS are difficult to diagnose. Disease management in these rare cases depends on the challenging determination of the lesion’s exact location and of the functional status of the benign tumors (if they are actively secreting cortisol). Surgical removal of both adrenal glands, also known as bilateral adrenalectomy, “ensures cure of AICS, but leads to permanent corticosteroid dependence and a lifelong risk of adrenal crisis,” investigators explained. Therefore, screening for the presence of unilateral or bilateral adenomas is essential to avoid unnecessary surgery. “Adrenal venous sampling (AVS) has been reported in a single institutional series … to aid in successful localization of cortisol-secreting adrenal adenomas in patients with bilateral adrenal masses and AICS,” researchers wrote. Researchers retrospectively assessed the usefulness of AVS in guiding management of patients with bilateral adrenal masses plus AICS. Nine women (age 51-73) with bilateral adrenal masses and AICS were included in the study. All subjects had undergone AVS at the University of Pittsburgh Medical Center from 2008 to 2016. None of the patients had apparent symptoms of Cushing’s syndrome. “Samples were obtained for testing of epinephrine [also called adrenaline] and cortisol from both [adrenal veins] and the external iliac vein. Multiple samples were obtained to ensure adequate sampling,” they wrote. Adrenal glands produce cortisol and epinephrine, among other hormones, which are critical for maintaining good health. In AICS, there’s an overproduction of both hormones that’s independent on the release of ACTH, which is produced by the brain’s pituitary gland. Successful adrenal venous sampling was achieved in eight women. “One patient with unsuccessful catheterization had [other additional diseases] and passed away from unrelated reasons,” researchers reported. AVS results indicated that all patients had bilateral cortisol-secreting adenomas. “Surgical management was strongly influenced by adrenal mass size. However, AVS may have influenced surgical decision-making in some cases, particularly when minimal difference in size was noted in adrenal mass sizes,” they reported. Six women underwent adrenalectomy: three had the gland with larger size mass removed (unilateral type of surgery); two had both glands removed; and one had the right gland removed followed by the left one, five months later, due to continuous hormonal overproduction without experiencing symptoms of Cushing’s syndrome. Evidence suggests that removal of the larger adrenal mass in patients with bilateral cortisol-secreting adenomas improves Cushing’s syndrome presentation. In theory, unilateral adrenalectomy reduces cortisol production through the removal of the oversecreting mass. Because of this, unilateral adrenalectomy of the larger adrenal mass was chosen in half of this study’s surgical cases, instead of bilateral adrenalectomy. Tissue analysis revealed multiple-lump masses, also known as macronodular adrenal hyperplasia (MAH), in all six surgical cases. In addition, computed tomography (CT) scan findings were predictive of bilateral MAH, with scans showing evidence of one or multiple nodules on one or both adrenal glands. “To the best of our knowledge, this is the second study to evaluate the utility of AVS in guiding management of patients with bilateral adrenal masses and AICS,” investigators said. The first study was by Young and included 10 patients with a more severe presentation of Cushing’s syndrome and other individual characteristics, which contributed to the differences in results, compared to the current study. In Young’s study, half the subjects had unilateral adrenal masses. Patients with bilateral cortisol-secreting masses frequently have a milder form of Cushing’s syndrome, which corroborates researchers’ findings. Despite suggesting that adrenal venous sampling is useful in excluding a unilateral adenoma as the cause of AICS, this study’s sample size is small. “More data are needed before AVS can be advocated as essential for management of patients with bilateral adrenal masses and AICS,” researchers concluded. From https://cushingsdiseasenews.com/2018/10/02/adrenal-venous-sampling-helps-surgical-decisions-type-cushings-syndrome/?utm_source=Cushing%27s+Disease+News&utm_campaign=a990429aad-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_ad0d802c5b-a990429aad-72451321
  9. In Memory of Lenise Petersen

    Lenise passed away Wednesday, Oct. 2, 2002 at 23 years old, just after her surgery.

    Read more at https://cushingsbios.com/2015/10/02/in-memory-of-lenise-petersen-october-2-2002/

  10. board-logo.png

     

    The Boards turn 18 Today!

    Today  is the birthday, or anniversary, of the boards starting September 30, 2000 (The rest of the site started earlier that year in July 21, 2000)

    Find the message boards here: http://cushings.invisionzone.com/

     

    woohoo.gif

  11. MaryO

    Birthday of the Message Boards

    Today is the birthday, or anniversary, of the boards starting September 30, 2000 (The rest of the site started earlier that year in July 21, 2000)
  12. Kimberley is from New Jersey.   She is not yet diagnosed with Cushing's but has many symptoms and a cyst on her pineal gland.

    Read her bio at
    https://cushingsbios.com/2018/09/29/kimberly-n-bedrock-mama-undiagnosed-bio/

  13. Bilateral adrenalectomy, in which the adrenal glands are removed, has a bigger negative impact on the quality of life of patients with Cushing’s disease than other treatment options, a recent study suggests. This may be due to the longer exposure to high levels of cortisol in these patients, which is known to greatly affect their quality of life, the authors hypothesize. The study, “Bilateral adrenalectomy in Cushing’s disease: Altered long-term quality of life compared to other treatment options,” was published in the journal Annales d’Endocrinologie. Cushing’s disease is caused by a tumor in the pituitary gland in the brain that secretes large amounts of adrenocorticotropic hormone, which, in turn, stimulates the adrenal glands to produce high levels of cortisol (a glucocorticoid hormone). The gold standard for treating Cushing’s disease is the surgical removal of the pituitary gland tumor. However, 31% of these patients still require a second-line treatment — such as another surgery, radiotherapy, medical treatment, and/or bilateral adrenalectomy — due to persistent or recurrent disease. Bilateral adrenalectomy is increasingly used to treat patients with Cushing’s disease, with high rates of success and low mortality rates. However, since the absence of adrenal glands leads to a sharp drop in cortisol, this treatment implies lifelong glucocorticoid replacement therapy and increases the risk of developing Nelson syndrome. Nelson syndrome is characterized by the enlargement of the pituitary gland and the development of pituitary gland tumors, and is estimated to occur in 15-25% of Cushing’s patients who have a bilateral adrenalectomy. Despite being cured with any of these treatment options, patients still seem to have a lower quality of life than healthy people. In addition, there is limited data on the impact of several of the treatment options on quality of life. Researchers in France evaluated the long-term quality of life of Cushing’s disease patients who underwent bilateral adrenalectomy and compared it with other therapeutic options. Quality of life was assessed through three questionnaires: one of general nature, the Short Form-36 Health Survey (SF-36); one on disease-specific symptoms, the Cushing QoL questionnaire; and the last focused on mental aspects, the Beck depression inventory (BDI). Researchers analyzed the medical data, as well as the results of the questionnaires, of 34 patients with Cushing’s disease — 24 women and 10 men — at two French centers. The patients’ mean age was 49.3, and 17 had undergone bilateral adrenalectomy, while the remaining 17 had surgery, radiotherapy, or medical treatment. Results showed that patients who underwent a bilateral adrenalectomy were exposed to high levels of cortisol significantly longer (6.1 years) than those on other treatment options (1.3 years). This corresponds with the fact that this surgery is conducted only in patients with severe disease that was not controlled with first-line and/or second-line treatment. These patients also showed a lower quality of life — particularly in regards to the general health, bodily pain, vitality, and social functioning aspects of the SF-36 questionnaire, and the Cushing QoL questionnaire and BDI — compared with those who underwent other therapeutic options. This and other studies support the hypothesis that these patients’ lower quality of life may be caused by longer exposure to high cortisol levels, and “its physical and psychological consequences, as well as the repeated treatment failures,” according to the researchers. Additionally, the presence of Nelson syndrome in these patients was associated with a significantly lower quality of life related to mental aspects. The team also found that adrenal gland insufficiency was a major predictor of a lower quality of life in these patients, regardless of the therapeutic option, suggesting it may have a stronger negative impact than the type of treatment. They noted, however, that additional and larger prospective studies are necessary to confirm these results. From https://cushingsdiseasenews.com/2018/09/28/bilateral-adrenalectomy-lowers-cushing-patients-quality-life-study/
  14. In Memory: Joanne Swain
     
    Joanne was known on the boards as raggettyjoanne.
     
    Mario VandDermeij announced the passing of his loving wife of 23 years. Joanne Swain VanDermeij at the age of 56.
     
    After 2 years and 3 months of fighting the system, Joanne was finally diagnosed March the 14th, 2011, with full blown adrenal Cushing's.
     
  15. Treatment with fluconazole after cabergoline eased symptoms and normalized cortisol levels in a patient with recurrent Cushing’s disease who failed to respond to ketoconazole, a case study reports. The case report, “Fluconazole as a Safe and Effective Alternative to Ketoconazole in Controlling Hypercortisolism of Recurrent Cushing’s Disease: A Case Report,” was published in the International Journal of Endocrinology Metabolism. Ketoconazole, (brand name Nizoral, among others) is an anti-fungal treatment used off-label for Cushing’s disease to prevent excess cortisol production, a distinct symptom of the disease. However, severe side effects associated with its use often result in treatment discontinuation and have led to its unavailability or restriction in many countries. Consequently, there is a need for alternative medications that help manage disease activity and clinical symptoms without causing adverse reactions, and that could be given to patients who do not respond to ketoconazole treatment. In this case report, researchers in Malaysia reported on a 50-year-old woman who fared well with fluconazole treatment after experiencing severe side effects with ketoconazole. The woman had been in remission for 16 years after a transsphenoidal surgery — a minimally invasive brain surgery to remove a pituitary tumor — but went to the clinic with a three-year history of high blood pressure and gradual weight gain. She also showed classic symptoms of Cushing’s disease: moon face, fragile skin that bruised easily, and purple stretch marks on her thighs. Blood and urine analysis confirmed high cortisol levels, consistent with a relapse of the pituitary tumor. Accordingly, magnetic resonance imaging (MRI) of her brain showed the presence of a small tumor on the right side of the pituitary gland, confirming the diagnosis of recurrent Cushing’s disease. Doctors performed another transsphenoidal surgery to remove the tumor, and a brain MRI then confirmed the success of the surgery. However, her blood and urine cortisol levels remained markedly high, indicating persistent disease activity. The patient refused radiation therapy or adrenal gland removal surgery, and was thus prescribed ketoconazole twice daily for managing the disease. But after one month on ketoconazole, she experienced low cortisol levels. Hydrocortisone — a synthetic cortisol hormone — was administered to maintain steady cortisol levels. However, she developed severe skin itching and peeling, which are known side effects of ketoconazole. She also suffered a brain bleeding episode, for which she had to have a craniotomy to remove the blood clot. Since she experienced adverse effects on ketoconazole, which also hadn’t decreased her disease activity, the doctors switched her to cabergoline. Cabergoline (marketed as Dostinex, among others) is a dopamine receptor agonist that has been shown to be effective in managing Cushing’s disease. But cabergoline treatment also did not lower the disease activity, and her symptoms persisted. The doctors then added fluconazole (marketed as Diflucan, among others), an anti-fungal medication, based on studies that showed promising results in managing Cushing’s syndrome. Three months after the addition of fluconazole to her treatment plan, the patient’s clinical symptoms and cortisol levels had responded favorably. At her next clinical visit 15 months later, her condition remained stable with no adverse events. “This case demonstrates the long-term efficacy of fluconazole in tandem with cabergoline for the control of recurrent Cushing’s disease,” the researchers wrote. The favorable outcome in this case also “supports the notion that fluconazole is a viable substitute for ketoconazole in the medical management of this rare but serious condition,” they concluded. From https://cushingsdiseasenews.com/2018/09/27/fluconazole-safe-effective-alternative-recurrent-cushings-patient-case-report/
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